Brian Koffman's Awesome Transplant and CLL Adventure

New Computer, New Engine, New Operating System, Same Old Me

2012-02-09T23:00:00.000-08:00

My cold is almost gone.

The insurance is in process for OSU. Life is on hold until I get an OK then a date to start.

The rate of paperwork expansion is ridiculous. Exciting new projects, but like an infant, they need a ton of nurturing before they can be left on their own.

My wife's Volvo has blown its third engine. This one lasted only 17 months, 5 months longer than the warantee. It happened when in the car poll lane of the 605 freeway so we have much to be grateful for. It could have been a much worse story. As it is, it is only money.

And I have almost finished a twisted migration from my good old lovable MACBOOK to a brand new sexy MACBOOK AIR (last year's model to save big money and wildly increase the difficulty of the process) and then upgraded that to LION. I have needed to learn to swipe in all kinds of new directions and have a new vocabulary of gestures.

These changes are not for the faint of heart, but they are most done, and my old computer sits forlornly by. As with an alcoholic, I needed to make a clean break, so all new emails and documents will live on my new virtual home. I suspect my white plastic laptop feels much like Woody from Toy Story. Life moves on.

It has been a challenging few days. I even went internet silent for a day, as both computers were in the shop for the migration. Talk about withdrawal. It was an act of cutting away the unessential that rivaled Yom Kippur. Went to bed early and read a lot. That's a good thing.

Amazing how I am so linked to this keyboard. It brings you to me and me to you, but it does pull me away from the flesh and blood right next to me.

Another cold, this time in Missouri, interfering with everything

2012-02-04T21:46:00.000-08:00

Fighting my second miserable head cold since Thanksgiving. All have occurred since I reduced my IVIg. Three trips across the country in two weeks was too much for me. Though my Missouri hosts could not have been kinder and my board meetings went well, I feel tired and achy and can't wait to get home tomorrow to my wife, my own home, and some great raw vegan food. And a good night's sleep.

The plans and effort to teach primary care providers about CLL and transplants is moving forward and I am proud of that work. That was one of the reasons for the trip to Springfield, as the medical eduction will be posted on Primary Issues, an online physician journal based here and then presented in live programs.

I am hoping to cover the ASCO (American Society of Clinical Oncology) meeting in Chicago with the same type of primary care perspective.

And I may be working on a new technology project to help cancer patients manage their care, and will be asking for your feedback soon.

And please don't forget about the audio files to handle to stress of CLL. They are really pretty helpful and I am hoping to raise some money for CCLPAG in Canada and LRF in the USA.

I need to get better soon to work on all these projects.

In Missouri

2012-02-03T09:52:00.000-08:00

Love the center of the country. Good people, but not much vegan food.

Back from Ohio

2012-01-31T18:27:00.000-08:00

To start, they know what a vegan is in Columbus and they actually know how to feed and nurture one, which is good thing, because it looks like I am going to staying there for the better part of three months starting sometime in February.

Yes, I was accepted in the trial of PCI-32765 and ofatumumab pending the insurance OK and the intake screening. That will happen sometime in the next few weeks, and the

I was very impressed with Dr. John Byrd and his team at OSU. Thorough, prepared, caring, smart and humane.

I must review pages of notes taken by my daughter, Heather who flew down from Chicago and her studying for the bar in Illinois (she is already licensed to practice law in NY) to be my scribe, second set of ears, and moral support for the whirlwind tour of this cold and windy central Ohio college town.

Over the next week, I will share what I learned, my decision process, and the next steps to get things going.

Right now I am still recuperating from the sleep deprivation of an alarm ringing before 4AM (1 AM Pacific time) to get to the airport on time for our flight home.

But it all going to be OK. They have good vegan food, a new drug that could save my life, and an NHL hockey team.

What more could I need?

Novel Therapies and Their Integration into Allogeneic Stem Cell Transplant for Chronic Lymphocytic Leukemia Biol Blood Marrow Transplant 18:S132-S13

2012-01-28T22:16:00.000-08:00

Dr. John Byrd is the lead investigator on the clinical trial NCT01217749 that is the reason I am flying to Columbus hoping to enroll to procure this exciting new therapy.

Anticipating the future, Dr. Byrd co-authored an important article (Novel Therapies and Their Integration into Allogeneic Stem Cell Transplant for Chronic Lymphocytic Leukemia Biol Blood Marrow Transplant 18:S132-S13) that articulate how the trial drug- PCI-32765 and other promising novel therapies may effect the time and place of transplants in CLL. It is a clear, thoughtful and accessible discussion that I strongly recommend.

On the eve of my departure for Ohio, I sent Dr. Byrd an email expressing how the uncertainty about the durability of the response to these new promising agents might be a good thing

Please tell me what you think.

Dear John,

Thank you for your thoughtful review of this important topic.

Implicit in your review of the evolving therapeutic paradigm for novel therapies and RIC HSCT in CLL is a shift in the calculation that each doctor and each patient must make when dealing with aggressive CLL .

Before the bloom of these new treatment options, an informed patient or hematologist could make a good faith calculation on what gives the better chance of PFS in five or ten years. Although it is always dangerous to compare data from one trial to that in another, and even more so to assume that statistics that are applied to a group can predict what happens to an individual, one could still study the Kaplan-Meier curves for a HSCT and any particular therapy and make at least a partially informed choice.

Now with the promise of the new treatments, the decision to consider a transplant has become more tricky for some. The K-M curves are known on the transplant side of the equation, but what the novel therapies will yield is based on extrapolation of very thin data. We are comparing a known to an unknown. Ironically, with the survival rates so poor for F refractory or 17p del disease, this "unknownness" is a source of hope for some patients and another reason for others with the aggressive or refractory CLL to consider a clinical trial over a more conventional route starting with chemotherapy and moving to transplant.

Thanks again.

Brian

What is implicit but not explicit in my letter to Dr. Byrd is how I myself employed precisely this hopeful calculus in my decision of the known versus the unknown.

As I leave tomorrow, I will keep you informed every step on the way.

Wish me luck.

It calls for snow in Columbus tomorrow.

Ice Hockey, Charity and Leukemia

2012-01-28T00:07:00.000-08:00

This is from the LA Kings web site and is a complete break from my teaching and reflections, but just a simple story that touches all my emotional triggers:

Every player on the Kings’ active roster contributes money to the Kings Community Corner, through which tickets are distributed to families who would otherwise be unable to attend games, and six players -- Bernier, Simon Gagne, Mike Richards, Dustin Penner, Scott Parse and Brad Richardson -- all personally purchase a set of four 100-level season seats, from which tickets are dispersed for each individual game, within the organization of the player’s choice.

While Richards’ tickets go to Padres Contra el Cancer (Fathers Against Cancer), “Gagne’s Gang” is the Leukemia & Lymphoma Society (LLS), “Penner’s Posse” is the Salvation Army, and both “Parse’s Party” and “Richie’s Rascals” come from the After School All Stars.Although all the ticket recipients are fortunate to be treated by the athletes themselves, “Bernier’s Angels,” all CHLA(Chrildren's Hospital, LA) affiliates, receive something extra special.

So the scorer of the most famous goal in Canadian hockey history, Paul Henderson, has CLL and Simon Gagne donates his seats to Leukemia & Lymphoma Society.

Ice Hockey and leukemia and charity in the same story. I am starting to feel this is some special connection.

I love hockey and I am thrilled when I see stars give to help those with blood cancers. It just feels good and makes me proud of my home team.

Go Kings Go

Go LLS Go

Dr Adrian Wiestner Speaking to Primary Care Providers about CLL

2012-01-26T00:53:00.000-08:00

Many of you have seen this clip before.

I am reposting as it is the first in a series of interviews that when strung together should make the average primary care provider much more comfortable with the diagnosis and management of his or her CLL patient..

The reality is that many patients, especially CLL patients, who nearly always have enough time to learn about their disease before needing therapy are often more up to date on the latest than their primary care provider who may not see or recognize too many CLL patients.

I am trying to change that knowledge gap. This small pilot project will give you a sense of my other life in CME (continuing medical education) as a medical director. Primary Issues is the online journal for PCPs where I plan to publish these video snippets with the text and the questions to measure outcome that you see below.

I need your help first .

Tell me what you think works and what misses.

Tell me what I should be saying to your PCP.

Understand this clip is just the briefest opening to what is CLL. It is of course not the whole story. Drs Kipps, Pagel, and Wiestner will be talking more about diagnosis, symptoms, complications, treatment and the overall role of the local primary care provider in the patient's care.

I promise I won't post the same clip twice again, I just needed to start at the beginning.

Please email at bkoffmanmd@gmail.com or post your comment or suggestion. It will help me and may help others.

Because we are all in this together.

CLL Overview with Dr. Adrian Wiestner

PRE TEST QUESTION

Managing CLL is made difficult by the fact that:

1: It is the most rare of all adult chronic leukemia.

2: It usually presents in an aggressive fashion with B symptoms and white counts over 100,000 that need prompt attention.

3: It is nearly always asymptomatic, doesn’t progress, and any treatment other than reassurance should be avoided.

4: It may be very aggressive and symptomatic or it may be very indolent and asymptomatic.

Chronic Lymphocytic Leukemia or CLL is the most common adult leukemia in the United States, with approximately 15,000 new cases a year representing about 30% of all adult leukemia. The male to female ratio is 1.7: 1 and the average age at time of diagnosis is 70 years old, but it not unusual to find it in a 30 year old (Hernández JA, Land KJ, McKenna RW. Leukemias, myeloma, and other lymphoreticular neoplasms. Cancer 1995; 75:381). It is more common in Caucasians, and less common in Asia. These differences appear to be genetic as they persist when the ethnic population moves to America. Ashkenazi Jews may be at particularly higher risk (Leukemia. 1998 Oct;12(10):1612-7.Epidemiology and ethnic aspects of B cell chronic lymphocytic leukemia in Israel.Shvidel L, Shtarlid M, Klepfish A, Sigler E, Berrebi A).

What makes CLL so difficult for both doctor and patient alike is that about 25% of patients present with asymptomatic disease found incidentally on a routine blood count that may never need treatment, whereas up to 10% may present with rapidly climbing lymphocyte count and enlarging nodes associated with fevers, drenching night sweats, extreme fatigue and/or unexplained weight loss that demand immediate treatment. Others follow a course somewhere in between. CLL absolutely demands personalized care.

POST TEST QUESTION

Managing CLL is made difficult by the fact that:

1: It is the most rare of all adult chronic leukemia.

2: It usually presents in an aggressive fashion with B symptoms and white counts over 100,000 that need prompt attention.

3: It is nearly always asymptomatic, doesn’t progress, and any treatment other than reassurance should be avoided.

4: It may be very aggressive and symptomatic or it may be very indolent and asymptomatic. (CORRECT)

Delayed in Dallas: Lesson for travel and CLL

2012-01-24T16:21:00.000-08:00

Sometimes it seems being smart and having connections allows you to see the train wreck coming, but may not let you get off the train.

Still in Dallas trying to fly home from Orlando.

I was notified as we landed of the delay due to change of planes. That pushed back our departure just long enough to catch the start of the weather delay. Now we have been delayed three more times for mechanical issues. 10 or 15 minutes each time. I get test messages every 10 to 15 minutes with the latest update from American Airlines. But we all know that nothing on a plane takes 10 or 15 minutes, but they soften the blow with these mini delays until sometimes it's too late to do anything, to find another way home to the west coast.

I thought about taking a later flight out when I first heard of the trouble, but this flight was scheduled to leave two hours earlier so I gambled it was the better choice.

The joys of flying. I guessed wrong.

Sometimes CLL is like that. You might know that your FISH report is bad news, that the best option for a remission will whack your marrow, that infections are a significant risk, but what can you do?

You do your best is what you do.

Make a wise choice and hope for the good response without too much damage and keep moving forward. Sometimes you realize that maybe you didn't make the best choices, but you must forgive yourself and move on. How could you know, and even if you did know, it might not have made any difference.

The one advice I have for flying or tackling CLL is to keep your options open. Try to avoid the last plane home that night. Look at the departure schedule. Know your Plan B. Have your airline phone number on speed dial. And bring a few extra days of your meds just in case.

What about CLL?

Try not to close doors for future cancer treatments and try to walk through doors that open that might lead to a chance for a long healthy spell between decisions and delays. They may not stay open for long, so the timing of when to start therapy is always tricky. As I have said before, the best time to start therapy is a few weeks before you need to.

I will eventually get home. The mechanic is aboard. Maybe we can leave real soon? We were just ask to fasten seat belts so that's a very good sign.

I am off to Ohio State next week for my clinical trial assessment. No direct flights I am afraid between anywhere in southern California and Columbus. I chose to fly through Phoenix to avoid weather. I am optimistic that route was a wise choice.

But my real optimism is reserved for my banging the door open to Dr. Byrd's trial with PCI-32765 and ofatumumab, That I am betting will turn out to be a sea change of a wise choice.

I am finishing this post 30,000 feet up in the air nearing home, so all is well.

How Doctors die

2012-01-21T10:50:00.000-08:00

All my recent upbeat posts on CLL begs the issue that we will all die. We don't get to choose when or of what we die, but he can chose how we deal with the process.

Just like life.

So a quick break from the nitty gritty of CLL to take a look at the nitty gritty of life and death, whether you do or don't have an "incurable" cancer and whether or not you are a doctor.

The following is a provocative article from Zocalo Public Square, an organization that explores a wide range of current and challenging topics in various forums. Good stuff and worth getting to know. Dr. Murray, the author of this article is a thoughtful assistant clinical professor at USC (where I taught for years as a clinical professor) and has written other articles that you can find at Zocalo Public Square.

How Doctors Die

It’s Not Like the Rest of Us, But It Should Be

by Ken Murray

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Of course, doctors don’t want to die; they want to live. But they know enough about modern medicine to know its limits. And they know enough about death to know what all people fear most: dying in pain, and dying alone. They’ve talked about this with their families. They want to be sure, when the time comes, that no heroic measures will happen—that they will never experience, during their last moments on earth, someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).

Almost all medical professionals have seen what we call “futile care” being performed on people. That’s when doctors bring the cutting edge of technology to bear on a grievously ill person near the end of life. The patient will get cut open, perforated with tubes, hooked up to machines, and assaulted with drugs. All of this occurs in the Intensive Care Unit at a cost of tens of thousands of dollars a day. What it buys is misery we would not inflict on a terrorist. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me if you find me like this that you’ll kill me.” They mean it. Some medical personnel wear medallions stamped “NO CODE” to tell physicians not to perform CPR on them. I have even seen it as a tattoo.

To administer medical care that makes people suffer is anguishing. Physicians are trained to gather information without revealing any of their own feelings, but in private, among fellow doctors, they’ll vent. “How can anyone do that to their family members?” they’ll ask. I suspect it’s one reason physicians have higher rates of alcohol abuse and depression than professionals in most other fields. I know it’s one reason I stopped participating in hospital care for the last 10 years of my practice.

How has it come to this—that doctors administer so much care that they wouldn’t want for themselves? The simple, or not-so-simple, answer is this: patients, doctors, and the system.

To see how patients play a role, imagine a scenario in which someone has lost consciousness and been admitted to an emergency room. As is so often the case, no one has made a plan for this situation, and shocked and scared family members find themselves caught up in a maze of choices. They’re overwhelmed. When doctors ask if they want “everything” done, they answer yes. Then the nightmare begins. Sometimes, a family really means “do everything,” but often they just mean “do everything that’s reasonable.” The problem is that they may not know what’s reasonable, nor, in their confusion and sorrow, will they ask about it or hear what a physician may be telling them. For their part, doctors told to do “everything” will do it, whether it is reasonable or not.

The above scenario is a common one. Feeding into the problem are unrealistic expectations of what doctors can accomplish. Many people think of CPR as a reliable lifesaver when, in fact, the results are usually poor. I’ve had hundreds of people brought to me in the emergency room after getting CPR. Exactly one, a healthy man who’d had no heart troubles (for those who want specifics, he had a “tension pneumothorax”), walked out of the hospital. If a patient suffers from severe illness, old age, or a terminal disease, the odds of a good outcome from CPR are infinitesimal, while the odds of suffering are overwhelming. Poor knowledge and misguided expectations lead to a lot of bad decisions.

But of course it’s not just patients making these things happen. Doctors play an enabling role, too. The trouble is that even doctors who hate to administer futile care must find a way to address the wishes of patients and families. Imagine, once again, the emergency room with those grieving, possibly hysterical, family members. They do not know the doctor. Establishing trust and confidence under such circumstances is a very delicate thing. People are prepared to think the doctor is acting out of base motives, trying to save time, or money, or effort, especially if the doctor is advising against further treatment.

Some doctors are stronger communicators than others, and some doctors are more adamant, but the pressures they all face are similar. When I faced circumstances involving end-of-life choices, I adopted the approach of laying out only the options that I thought were reasonable (as I would in any situation) as early in the process as possible. When patients or families brought up unreasonable choices, I would discuss the issue in layman’s terms that portrayed the downsides clearly. If patients or families still insisted on treatments I considered pointless or harmful, I would offer to transfer their care to another doctor or hospital.

Should I have been more forceful at times? I know that some of those transfers still haunt me. One of the patients of whom I was most fond was an attorney from a famous political family. She had severe diabetes and terrible circulation, and, at one point, she developed a painful sore on her foot. Knowing the hazards of hospitals, I did everything I could to keep her from resorting to surgery. Still, she sought out outside experts with whom I had no relationship. Not knowing as much about her as I did, they decided to perform bypass surgery on her chronically clogged blood vessels in both legs. This didn’t restore her circulation, and the surgical wounds wouldn’t heal. Her feet became gangrenous, and she endured bilateral leg amputations. Two weeks later, in the famous medical center in which all this had occurred, she died.

It’s easy to find fault with both doctors and patients in such stories, but in many ways all the parties are simply victims of a larger system that encourages excessive treatment. In some unfortunate cases, doctors use the fee-for-service model to do everything they can, no matter how pointless, to make money. More commonly, though, doctors are fearful of litigation and do whatever they’re asked, with little feedback, to avoid getting in trouble.

Even when the right preparations have been made, the system can still swallow people up. One of my patients was a man named Jack, a 78-year-old who had been ill for years and undergone about 15 major surgical procedures. He explained to me that he never, under any circumstances, wanted to be placed on life support machines again. One Saturday, however, Jack suffered a massive stroke and got admitted to the emergency room unconscious, without his wife. Doctors did everything possible to resuscitate him and put him on life support in the ICU. This was Jack’s worst nightmare. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.

Even with all his wishes documented, Jack hadn’t died as he’d hoped. The system had intervened. One of the nurses, I later found out, even reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly, and he’d left the paperwork to prove it. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his stated wishes, prolonging his life, and his suffering, a few more weeks. I would even have made a little more money, and Medicare would have ended up with an additional $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.

But doctors still don’t over-treat themselves. They see the consequences of this constantly. Almost anyone can find a way to die in peace at home, and pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures. I was struck to hear on the radio recently that the famous reporter Tom Wicker had “died peacefully at home, surrounded by his family.” Such stories are, thankfully, increasingly common.

Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure that turned out to be the result of lung cancer that had gone to his brain. I arranged for him to see various specialists, and we learned that with aggressive treatment of his condition, including three to five hospital visits a week for chemotherapy, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me.

We spent the next eight months doing a bunch of things that he enjoyed, having fun together like we hadn’t had in decades. We went to Disneyland, his first time. We’d hang out at home. Torch was a sports nut, and he was very happy to watch sports and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital foods. He had no serious pain, and he remained high-spirited. One day, he didn’t wake up. He spent the next three days in a coma-like sleep and then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.

Torch was no doctor, but he knew he wanted a life of quality, not just quantity. Don’t most of us? If there is a state of the art of end-of-life care, it is this: death with dignity. As for me, my physician has my choices. They were easy to make, as they are for most physicians. There will be no heroics, and I will go gentle into that good night. Like my mentor Charlie. Like my cousin Torch. Like my fellow doctors.

Ken Murray, MD, is Clinical Assistant Professor of Family Medicine at USC.

Coping with Cancer: Living with Leukemia and Lymphoma

2012-01-19T16:21:00.000-08:00

Friends,

Like my hero, Chaya Venkat at http://updates.clltopics.org/ I have avoided selling anything through my website or promoting anything more than a bone marrow drive or a worthy charity.

I am now going break that rule to make a heartfelt sales pitch for a project that I was involved with in an effort to help fellow CLLers or those with other cancers.

For the last several months I have been working with my friend, Dr. Larry Deutsch an international renowned hypotherapist.

Like me, Dr Larry is a Canadian family doctor. Like me he teaches other doctors. Like me, Dr. Larry has needed to change the nature and scope of his practice because like me Dr. Larry Deutsch has CLL.

We have been collaborating on an audio file that uses his expertise and empathy and my knowledge of the disease from the inside out to help patients cope and maintain a calm sense of control with the diagnosis of leukemia and lymphoma in particular and cancer in general.

I believe that the MP3 that we produced is strong medicine. Larry is a powerful hypnotherapist with an important message.

Let me be clear. We are not promising a melting away of your cancer by a sheer act of will. We are not promising any cures. We are simply trying to build your confidence in dealing with a process that can often feel overwhelming.

Dr Deutsch did the heavy lifting on this project, but I am very proud of the part I played and very happy with the final result.

Please listen to a sample on this webpage.

Please download the MP3.

You will be glad that you did.

Every sale will generate a donation to CLLPAG in Canada and LRF in the USA, two important organizations that help the CLL and lymphoma community. I have worked with them both. Their conferences are first rate and important to many patients and caregivers, but they could do so much more with more support.

We all do so much better when we can get some help that allows us to slow down, and let go of the stress.

As I have been known to say, we are all in this together.

Hope my readers are OK with this bit of a commercial, but I am a believer in getting behind what you believe in and I do believe that how we cope with our cancer plays a role in how we do with our cancer.

I will publish more links to ASH videos over the next few days, and some stuff on 11q deletion, but tomorrow I leave for a conference on CME in Orlando for a few days.

What is CLL? Dr. Adrian Wiestner from the NIH gives an answer.

2012-01-18T23:42:00.000-08:00

This is pretty basic stuff for us experienced CLLers, but I think the clarity of the dual nature of CLL is particularly well presented.

It is a very short segment of a much longer interview at ASH 2011 with Dr. Adrian Wiestner who hails from the NIH and who has done and is doing very important research in CLL.

And is he is a great guy too.

Most primary care providers are clueless about CLL so I am putting together a program of videos and education programs to teach them how to better care for these patients. More to come.

Andrew Schorr interviewing me at ASH 2011

2012-01-17T17:28:00.000-08:00

My friend and fellow CLLer, the Seattle based journalist Andrew Schorr does a great service to CLL patients in particular and many others with chronic illnesses in general with his helpful interviews with the major researchers, often at the big medical society meeting. Here he takes a break from the "usual suspects" and interviewed me at ASH. (The American Society of Hematology) , 2011.

Check out his wide ranging website full of real dialogue with doctors and patients at http://www.patientpower.info/ to learn more. I am sure you will.

Unique Specimens I will be there, will you?

2012-01-15T13:27:00.000-08:00

Join my son Will for his annual Avanti show opening. Patty and I will be there and I hope you join us for a splendid time. I leave the next morning for OSU, so don't miss this chance to say hello and good luck, enjoy amazing art, eat great veggie food and reunite with fun friends of all ages.

Unique Specimens - 11 Curiosities Rendered in Bleach

An open invitation to fans, artists, enthusiasts, critics, intellectuals, press people, and every living member of the secret subculture of Orange County. Back to where it all started. The opening for my 6th Annual show at Avanti Cafe will be held on the evening of Saturday January 28, a free event as always. Vegetarian food, craft beer, and real art - it only happens once a year!

Join the event on Facebook for details (http://www.facebook.com/events/144525098995088/)

Hope to see you there!

-Will Koffman

Why I am keen on PCI-32765

2012-01-14T21:56:00.000-08:00

This very nice blog post deals with the business as much as the scientific aspects of the enthusiasm about Bruton's Tyrosine Kinase (BTK) Inhibitors, specifically PCI-32765 in CLL and other B cell lymphomas.

It is a nice simple introduction to how the BTK inhibitors work and outlines the little but promising data presented at ASH 2011. The blog does not mention the 89% progression free survival in CLL.

I suspect we still don't have the whole story. In fact, I am sure we don't.

What do you think?

Am I and many others over excited about this little pill when the evidence is still pretty sparse?

Probably, but there doesn't seems to be much downside, and the other options of doing nothing or using an established therapy sure have their own very real problems.

And I can always move onto those options later if PCI-32765 doesn't work out. Moving in the other direction is not a likely option.

I am not going there. I have every reason to believe that I will be part of the vast group of dramatic responders, especially since my disease is so concentrated in my nodes and my 11q deletion has pretty much done everything by the book so far, which means my clone should melt away in this trial.

Can't wait to get started.

I see Dr. Kipps in three days to go over my bone marrow biopsy and get his final blessing on my plans.

Open knowledge saves lives

2012-01-13T23:44:00.000-08:00

I have been posting important and what I hope have been meaningful articles and requests.

Legislation is being proposed that may block our access to publicly funded research and the blog post below outlines the story.

Please carefully scrutinize this pasted directly from http://e-patients.net/archives/2012/01/open-knowledge-saves-lives-oppose-h-r-3699.html and see if you don't agree.

If you do, then please let your voices be heard and share the link to http://e-patients.net with others.

My take is that it seems a particularly self servicing slight of hand to call the requirement for public access to publicly funded research "preventing regulatory interference".

As as doctor on staff at a hospital, I have access to most articles through the library, but most are not so lucky.

After all, we are all this together, and without knowledge we are are lost

Open knowledge saves lives. Oppose H.R. 3699!

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Gilles Frydman | January 12, 2012

Note: Although currently not a member of the SPM, I have been involved, since its inception, with Tom Ferguson and others, in the creation of the e-patients white paper . I am also one of the co-founders of the SPM and one of the volunteers who created the infrastructure and policies of JOPM, an Open Access, peer-reviewed publication where articles are published at no cost . Today, I use the privilege offered to the founders of this group to post on e-patients.net in my name only and not representing SPM in any way.

In 2008, in culmination of years of effort and community interaction, the National Institutes of Health made all federally-funded research publications openly accessible by publishing the NIH Public Access Policy. The purpose of mandating such open access, at a maximum 12 months after publication, was to ensure that the findings are accessible to all their potential users, not just (as in the print era) to those whose institutions can afford subscription access to the journal in which they happened to be published. Opening access maximizes dissemination, a key element to maximize scientific discovery (see the great 2008 presentation by Elias A. Zerhouni, M.D., NIH Director, to the Subcommittee on Courts, the Internet, and Intellectual Property). Of course, ACOR members were highly supportive of the proposed policy and provided a significant number of comments during the initial RFI period.

In 2009 the policy was made permanent by the Omnibus Appropriations Act:

SEC. 217. The Director of the National Institutes of Health (“NIH”) shall require in the current fiscal year and thereafter that all investigators funded by the NIH submit or have submitted for them to the National Library of Medicine’s PubMed Central an electronic version of their final, peer-reviewed manuscripts upon acceptance for publication, to be made publicly available no later than 12 months after the official date of publication: Provided, That the NIH shall implement the public access policy in a manner consistent with copyright law.
Compliance with this Policy remains a statutory requirement and a term and condition of the grant award and cooperative agreement, in accordance with the NIH Grants Policy Statement.

Right now, the great gift to the public that is the NIH Public Access Policy, is under serious attack with a proposed piece of legislation. H.R. 3699, aka The Research Works Act (RWA), that would prohibit the deposit of the manuscripts mentioned above, seriously impeding the ability of patients and caregivers, researchers, physicians and healthcare professionals to access and use this critical health-related information in a timely manner. Oppose H.R. 3699!

As any person looking for information of significance about cancer knows, having access only to the abstract, and not to the full text article, is insufficient. Ironically & symptomatically, the 2004article by Elias A. Zerhouni, then-director of the NIH, entitled “NIH Public Access Policy” explaining the rationale behind the proposed policy is behind a paywall and demonstrates the extent of the problem!

In fact I have been working for a while with Peter Murray-Rust from Cambridge, leading thinker behind the Panton Principles & guru of large scale text mining of scientific publications to push further the extraction of disease-focused information from Open Access articles, because, as Peter says “Open Knowledge Saves Lives! Close Access Can Kill!”

What is H.R. 3699 / RWA?

Presented “To ensure the continued publication and integrity of peer-reviewed research works by the private sector” the bill states:

LIMITATION ON FEDERAL AGENCY ACTION.

No Federal agency may adopt, implement, maintain, continue, or otherwise engage in any policy, program, or other activity that (1) causes, permits, or authorizes network dissemination of any private-sector research work without the prior consent of the publisher of such work; or (2) requires that any actual or prospective author, or the employer of such an actual or prospective author, assent to network dissemination of a private-sector research work.

Translated by Stevan Harnad:

If public tax money is used to fund research, that research becomes “private research” once a publisher “adds value” to it by managing the peer review. Since that public research has thereby been transformed into “private research,” and the publisher’s property, the government that funded it with public tax money should not be allowed to require the funded author to make it accessible for free online for those users who cannot afford subscription access.

Because of the highly successful public access policy, millions of Americans now have access to vital health care information from the NIH’s PubMed Central database. Under the current policy, more than 90,000 new full-text biomedical manuscripts are deposited for public accessibility each year. For all of us who are “scholarly poor” a term coined and defined by Peter Murray-Rust as “denied access to information freely given by scientists in their publications”, the policy may have been the most important piece of legislation favoring the emergence and sustainability of Participatory Medicine. This takes increased significance now that the only inflation in health care spending is the 19% yearly increase in individual spending, forcing people to pay much closer attention to what is being done to them by any professional actor of the medical system. As I wrote 2 1/2 years ago “Will The Great Recession Create Millions of e-Patients?” What I had not imagined was the devastating impact of local budget squeezes on public libraries hours of operations, which have been severely hit across the nation. Since publishers use the access to public libraries as an excuse to close universal internet access, their argument looks pretty weak for the foreseeable future.

Before reading further, remember the definition of Participatory Medicine:

a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

How can you be a responsible driver of your health if you don’t have direct access to all information? That’s why Dave has been fighting for his damn data and similarly why ACOR has been engaged in multiple efforts to maximize the dissemination of any and all scientific publication that relates to an ACOR group condition.

Seeing a corrupt travesty of the democratic process used today to promote the interests of a few gatekeepers at the expense of millions of people is very disturbing. The NIH and other agencies must be allowed to ensure timely, public access to the results of research funded with taxpayer dollars. Please oppose H.R. 3699. You’ll be in great company!

For example, Tim O’Reilly, who has been a main witness of the power of Openness in computingfinds H.R. 3699 objectionable:

I oppose H.R. 3699 (“To ensure the continued publication and integrity of peer-reviewed research works by the private sector.”) because it is a classic example of “regulatory capture” by an industry that is feeding off of government largesse.
It is a frontal attack on the open access movement, which scientists are increasingly seeing as critical to the further progress of science.
[…]I strongly suggest that the authors of this bill consult the Panton Principles, put forward by a group of scientists at Oxford University, or read Michael Nielsen’s new book, Reinventing Discovery, about the importance of open access to the future of science.
Please don’t write laws that protect 19th century industries against 21st-century disruption!

Tim’s last sentence may need some explanation, which thankfully has been provided by Microsoft Researcher and grand guru of social media’s influence on the youth, danah boyd, in her December blog post Save Scholarly Ideas, Not the Publishing Industry (a rant):

The scholarly publishing industry used to offer a service. It used to be about making sure that knowledge was shared as broadly as possible to those who would find it valuable using the available means of distribution: packaged paper objects shipped through mail to libraries and individuals. It made a profit off of serving an audience. These days, the scholarly publishing industry operates as a gatekeeper, driven more by profits than by the desire to share information as widely as possible. It stopped innovating and started resting on its laurels. And the worst part about it? Scholars have bent over and let that industry continuously violate them and the university libraries that support them. [..]
WTF? How did academia become so risk-adverse? The whole point of tenure was to protect radical thinking. But where is the radicalism in academia?
Ironically, of course, it’s the government who is trying to push back against the scholarly publishing’s stranglehold on scholarly knowledge. [..]
Please, I beg you, regardless of whether or not we can save a dying industry, let’s collectively figure out how to save the value that prompted its creation: making scholarly knowledge widely accessible.

In all fairness I must present the opinion of those who think H.R. 3699 is a step forward. You may not be entirely surprised that the most supportive is none other than the Association of American Publishers and its Professional and Scholarly Division. This what they had to say:

The legislation is aimed at preventing regulatory interference with private-sector research publishers in the production, peer review and publication of scientific, medical, technical, humanities, legal and scholarly journal articles. This sector represents over 1.3 million articles published annually which report on, analyze and interpret original research; more than 30,000 U.S. workers; and millions of dollars invested by publishers in staff, editorial, technological, capital and operational funding of independent peer review by specialized experts. North American-based science journal publishers alone account for 45% of all peer-reviewed papers published annually for researchers worldwide. [..]
The Research Works Act will prohibit federal agencies from unauthorized free public dissemination of journal articles that report on research which, to some degree, has been federally-funded but is produced and published by private sector publishers receiving no such funding. It would also prevent non-government authors from being required to agree to such free distribution of these works. Additionally, it would preempt federal agencies’ planned funding, development and back-office administration of their own electronic repositories for such works, which would duplicate existing copyright-protected systems and unfairly compete with established university, society and commercial publishers. [..]
Journal articles are widely available in major academic centers, public libraries, universities, interlibrary loan programs and online databases. Many academic, professional and business organizations provide staffs and members with access to such content.

So, here we have it! I’ll let others describe what stands behind the term “private-sector research publisher” here and here (good reads!). What strikes me is that in the entire press release there is not a single mention of the American people at large The publishers want to stop the public to have easy access to scientific articles. The last paragraph really glows when put in parallel with Tim’s last sentence “Please don’t write laws that protect 19th century industries against 21st-century disruption!”

To add insult to injury look at the two co-sponsors of the bill.

Darell Issa is t he wealthiest member of congress, with an estimated fortune of between $165 Million and $451 Million in 2010. I doubt that paying $32 to $40 for a scientific article makes a dent in his monthly spending, unlike the situation for most Americans. What is completely incomprehensible is that Darell Issa is avowedly supporting Openness. His Twitter page says it all: “I also greatly enjoy an #OPEN, accessible & uncensored internet.” The Atlantic wondered “Why Is Open-Internet Champion Darrell Issa Supporting an Attack on Open Science?” which ends with “And that’s just it. If the goal is protecting the publishing industry, this bill’s a winner. But for those interested in improving access to scientific research, they should stay far, far away.” Do you start to see a trend in the objections to this nasty piece of legislation?

The 2^nd co-sponsor, Democrat Carolyn Maloney, is the largest recipient of contributions from the publishing industry. Michael Eisen discovered via MapLight, a site tracking political contributions, that Dutch publisher Reed Elsevier and its senior executives made 31 contributions to members of the House in 2011, of which 12 went to Representative Maloney. This includes contributions from 11 senior executives or partners, only one of whom is a resident of her district.

Why should e-patients oppose H.R. 3699?

Michael Eisen said it best:

It is inexcusable that a simple idea – that no American should be denied access to biomedical research their tax dollars paid to produce – could be scuttled by a greedy publisher who bought access to a member of Congress.
So I urge you to call/write/email/tweet Representative Maloney today, and tell her you support taxpayer access to biomedical research results. Ask her why she wants cancer patients to pay Elsevier $25 to access articles they’ve already paid for. And demand that she withdraw H.R. 3699. [emphasis added]
Representative Maloney:
Twitter: @RepMaloney @CarolynBMaloney
Phone: 202-225-7944
FAX: 202-225-4709
Email: Use this form]

This widget has been placed on a website (e-patients.net) that is not authorized.

Unfortunately the representative is not interested and does not allow emails to be received from outside of her district (although her proposed legislation would effect the whole nation), so unless she is your congressperson, you are stuck sending a letter or a fax or a tweet.

Tributes for Dr. Hamblin

2012-01-12T21:24:00.000-08:00

This is copied directly from the DAILY ECHO, the local paper where Dr. Hamblin lived in Bournemouth, England.

Tributes pour in for Professor Terry Hamblin

10:00am Wednesday 11th January 2012 in News

By Joanna Codd »

TRIBUTES have been pouring in from all over the world for a brilliant Bournemouth doctor and cancer researcher who has died at the Macmillan Unit in Christchurch.

Worcester-born, but Hampshire-bred Professor Terry Hamblin, 68 – known to friends and colleagues as “Prof” – became an NHS consultant at the age of 30, and combined his hospital work with often world-beating research aimed at finding more effective treatments for cancers.

His achievements included carrying out Britain’s first stem cell transplant in the 1980s; and developing the first DNA cancer vaccine in the world to be trialled on patients.

He changed the way chronic lymphocytic leukaemia was managed with his discovery that it had two types, one giving patients an average of 25 years survival. A professor at Southampton University since 1987, Prof Hamblin continued his research work after retiring from the NHS in 2003.

He chaired the initial appeal to improve the cancer and blood disorders unit at the Royal Bournemouth Hospital.

He was also an honorary consultant haematologist at Kings College Hospital, London; editor in chief of the medical journal Leukaemia Research and a prolific writer with wide-ranging interests, reflected in his online blog.

The father of four attended the Lansdowne Baptist Church, where he was a deacon or elder for about 18 years and he led the Sunday School for 11 years.

In 2003, he had a road named after him in Bournemouth.

Local fundraiser Estelle Wilson said: “I am proud to have been able to call Professor Terry Hamblin a friend for over 30 years.

“As well as his professional achievements in medicine, specifically successful research in the treatment of blood cancers, Prof has been an outstanding human being, always ready to help, advise, mentor and support patients, colleagues, family or friends.

“Prof Hamblin has been a literal life-saver to thousands of local patients, having treated them firstly at Boscombe Hos-pital and later at the Royal Bournemouth.

“He initiated the Bournemouth Leukaemia Fund, which funds research at the Royal Bournemouth into all blood cancers.

“I am determined to carry on fundraising for this charity in his name and in his memory.”

Long-standing colleague Prof-essor Martin Glennie, director of cancer sciences at Southampton University, said: “Professor Hamblin was one of the founder scientists who helped establish Southampton and Bournemouth as centres of excellence for cancer research back in the early 1970s.

“He was a leader in characterising different types of lymphoid cancers, identifying new drug-targets, and pioneering the development of antibody and vaccine-based drugs.

“His research and insight were world renowned, including showing that leukaemia patients must be treated and managed individually, with some needing aggressive intervention and others thriving under a ‘wait and see’ schedule.

“Professor Hamblin was one of our brightest scientists and his in-sights and enthusiasm will be missed by all who knew him.”

Getting closer

2012-01-12T01:17:00.000-08:00

I am fully approved with my authorization numbers for the consult with Dr. Byrd at Ohio State to see if I qualify for the trial. Hard to imagine that if my insurance OK'd the consult to see if I was appropriate for the trial they would give me grief about enrolling in it if Dr. Byrd so recommends.

I am feeling pretty confident that Blue Shield, OSU, my docs here and I are all pulling our oars in the same direction now and it will all work out.

The reams of medical records as PDFs, photocopies, and on disc are slowly coming together.

Hotel is booked. Rental car will be done tomorrow.

My bone marrow biopsy FISH showed my 11q del in an estimated 11.5% of my cells. Surprisingly, this is the first time over the many years at UCSD at Kipps's lab or at City of Hope with all my blood tests, bone marrow biopsies and even the removal of the huge mass of CLL cells with my splenectomy that the FISH has confirmed my original finding of 11q deletion at time of diagnosis. That is a matter for a much longer post, but it will have to wait until a time I am more awake.

With the patient help of my son Ben, I have made good progress on getting the ASH videos online and they should be available by next week. I am very pleased with the project to educate primary care providers about CLL and transplants.

Watch here soon for more on a link to an audio file on handling the stress of CLL with hypnosis. Another project I am very proud of and one that I hope will not only certainly help those who listen to it, but will also raise a bit of money for CLL research. More later. I promise.

It's all getting closer.

Forget CLL at least for a few Golden Moments

2012-01-10T23:15:00.001-08:00

The sunset view from our balcony at Crystal Cove.

It's only a 12 minute drive from our house, but it is a world apart, a step back in time to a simpler and more natural way of being.

Being here is so decompressing.

CLL? What CLL?

Perfect!

Much News: Almost all of it Good on the CLL Front

2012-01-09T22:27:00.000-08:00

At the beach and connecting by a tethered Iphone which is a whole other story.

In the midst of the sad visit to a long time patient getting compassionate hospice care, and in the process of digesting the loss of Dr. Hamblin, surely one of the kindest and brightest lights in the world of CLL, and in the aftermath of responding to a scare about a long time friend's daughter's cancer reoccurring, I got a bunch of good news.

The finding on my bone marrow are subtle, and the report is preliminary, but it is not bad. The CLL is now about 10% of the marrow, up from 3% only nine months ago, but it is not racing out of control. I take this news as neutral.

The health and cellularity of the marrow itself may be better than the last sample suggested when the report said my marrow had been damaged. There is some contradictory findings that I need Dr. Kipps to help me understand before I declare this a victory. Dr. Kipps may demand a recount.

The flow cytometry shows my clone is CD20 dim which means that ofatumumab (the other drug used with PCI-32765 in the OSU trial) may have some real therapeutic effect and all my infusions of rituximab have been cleared away. No CD20 positivity on my B cells might have given Dr. Byrd some pause as to my acceptability to a trial that relies heavily on an anti-CD20 antibody to clear the blood of the leukemia cells once they are flushed from the nodes by PCI-32765. I see this as one more obstacle removed on the road to Ohio.

FISH is still pending and has taken on a surprising new importance that I will explain in a follow-up post. (Hint: My 11q deletion may not be real).

My gastroenterologist called me to say that all 15 biopsies of my stomach and duodenum showed no metaplasia, no abnormal lymphocytes, and no H- Pylori. No hidden lymphoma or leukemic infiltrates. Another worry crossed of my list.

No wonder my tummy hurt that night. 15 biopsies!

And...... (drum roll, please)

My case manager at Blue Shield says that my consult with Dr. Byrd has been approved. Ohio State needs to call her and work out the details, but it's a go. Thank you, thank you.

So Columbus, here I come.

But wait, there's more!

A dear friend offered to take Patty and me to Italy next year for a month to stay at his rented villa. All expenses paid!

And my friend's daughter's imaging came back negative. No new cancer.

And finally my daughter and her boyfriend in Chicago are committed to switching to a plant based diet. And his employer is supporting it!

Sometimes we get an embarrassment of good fortune.

A Mitzvah: Visiting the dying

2012-01-09T13:01:00.000-08:00

It is a mitzvah (a Jewish commandment/good deed rolled into one) to visit the sick and dying, so Patty's and my beach retreat can wait a few hours. My friend/patient may not. This is no burden. In fact, I am lucky and privileged to be invited into these moments, these turning points and passages.

What I do miss is the other end of the cycles, the births, the bar mitzvahs, the graduations, the marriages. Those are less frequent these days, and a "senior" family doctor like me get called to less and less of them as my patients get older too. It's especially true for me as I no longer sees all those germy kids.

This serves as a reminder to celebrate the big events when they do appear and gives even more reason to squeeze the joy out of all life's little wonderful moments, victories, and treasures.

Terry Hamblin 1943-2012

2012-01-08T12:00:00.000-08:00

Visit to Dr. Terry Hamblin at his home in Bournemouth, England, March 2011

From his blog; Mutation of Mortality :

Terence John Hamblin 1943 – 2012

It is with great sadness that we announce that Terry peacefully passed away shortly before 1:00 AM on Sunday 8th January 2012.

The family wish to thank everyone for their prayers and kind message sent over the period of Terry's illness.

From me:

Damn cancer. Damn, damn cancer.

To die in his 60s, a man with so much left to give and such a generous heart for giving.

His intellectual rigor, his demand to examine the raw data and the raw science under the hood, his prying open and breaking down each cancer puzzle into digestible bits that could perhaps someday be modified to gain an advantage on our relentless malignant tormentor, this scientific drive informs how I, when I am at my best, approach my writing on CLL and all my medical education topics. He was a mentor.

But it was his generous soul, his constant giving, and his deep faith that were what I will most remember.

He modeled the joy and blessing that comes from giving. You could read it between the lines of the counsel he offered so often and so freely to the many who reached out to him when overwhelmed in cancer's grip,

He lived in the peace and certitude that comes from his unflinching faith. He even got this skeptical Jew to pray for him, a believing Christian.

I was lucky to visit him and his wife last March at his home.

I will miss him. The whole CLL community will. And many more.

We are the ones dismayed. Or angry. Or both.

We are the ones lost and uneasy.

He is at peace.

Forgetting

2012-01-07T16:27:00.000-08:00

Yesterday I had Fentanyl and Versed in my head so that I could have a scope in my stomach for my esophagogastroduodenoscopy or EGD. Although my wife said I was polite, coherent and appropriate, I remember next to nothing after the procedure. Thankfully I remember nothing at all about the procedure itself, a scope of my stomach and first part of my small bowel to follow up on some minor unexpected and hopefully unimportant changes noted two years ago on a biopsy.

I don't even remember enjoying the brief opioid high even though Fentanyl is supposed to be a real kick. Don't ask me though.

My wife tells me that they told me that nothing was found during the exam. Biopsies are pending.

Weird being so amnesiac. Hope I am OK today. Hard to self monitor when the problem is your ability to remember and monitor what you said. I was and could still be totally unaware of how poorly I process the recent memories.

They need something like these drugs for PTSD. There is actually some interesting research on using Beta-blockers to cut off the emotional content of violent memories, but this combo wipes the whole slate clean.

I don't like being unaware and I sure don't like being dopey.

Getting ready for Ohio or am I tough enough?

2012-01-06T00:09:00.001-08:00

By the end of this first week of the year I will have had one bone marrow biopsy and one bone marrow aspiration, two blood draws, one infusion, one clinic visit, and one upper endoscopy (EGD), all as prep for the clinical trial at Ohio State University.

In between, I have been filling out the necessary multiple forms and collecting medical records from all over that they requested and getting offers of help by phone and email about accommodations and travel and food and a synagogue.

Nothing, not one item, is in the done column yet. It is all in process. It's all getting close

The big issue: No word yet from Blue Shield on whether they will cover the cost of the consult, but I am moving ahead as if it's a done deal. What choice do I have?

I am supposed to love this journey, but what I really want is to just reach the destination.

I am beginning to suspect that the OSU investigators really don't want all these lab and pathology findings and paperwork. They are secretly using this whirlwind of activity as a surrogate to see if I am tough enough to handle the rigors of the repetitive travel needed for the trial in Columbus this winter.

I am tough enough, but only because I am getting a bunch of help.

Another boring bone marrow biopsy and aspiration

2012-01-04T17:21:00.000-08:00

When asked if I had had this procedure before, I just smiled my yes.

When asked how many times, I didn't know.

Becky, Dr. Kipps' NP was great, the pain was minimal during and after, though my blood pressure did shoot up a bit. I am convinced it more a matter of technique than strength, though I know this experienced oncology nurse worked hard to get the specimen. Thanks to G-d for lidocaine.

You want your bone marrow biopsy to be routine. Results in two weeks. That is the part that is hardest for me.

With no meds for pain, I was well enough to stop at my new favorite raw restaurant, Peace Pies in my old haunt, Leucadia. These guys are amazing and committed. Great introduction to raw food. And I love that old beachy still slightly hippy feeling of that stretch of Pacific Coast Highway.

Back home, after a desperately needed nap, I am back to the grind and cleaning up the house before my wife comes back tomorrow.

Making good progress on my to do list for the CLL but nothing is "completed" yet and life has a way of disrupting my plans. That's OK. It reflects an active engagement with the world.

Though the cat is fine company, I miss my wife who is out of town helping out with our 6 month old granddaughter. Amira's blog is much more more exciting and certainly more fun to look at than mine.

My most brilliant move today was to pick up "to go" a raw organic vegan "tuna sandwich" and a slice of "apple pie" for my dinner, so life is sweet.

A good day. Another ho-hum bone marrow biopsy and drive along the amazing California coast.

Old Vaccine for a New Population: Prevnar 13

2012-01-04T11:49:00.000-08:00

Good news.

I pasted this article from a link sent by Therapeutic Daily about approval of "kid's" vaccine for adults over 50.

This news is about the conjugated form of the pneumococcal vaccine that kids have been getting for years. Protein conjugated vaccines such as Prevnar are better at eliciting an immune response than the wimpy antigenic stimulation of a polysaccharide vaccine such as Pneumovax that until recently was the only FDA choice for adults. Moreover, protection against 13 subtypes of this potentially lethal bacteria in those with compromised immunity is better than the old Prevnar 7 but still not up to the high water mark of Pneumovax 23. More quantity, less quality.

So if we are early in your CLL, and haven't had recent rituximab or chemo, we should ask our doctor about it. The longer we wait, and the more immune damaging drugs that have hit our veins, the less likely of any meaningful response. Still, the risks are low, though the timing of boosters can be tricky and the small but real chance of untoward reactions are issues best discussed with our local providers.

More importantly, suggest that appropriate family members and friends do the same. See my recent post about the importance of herd immunity.

Remember that the leading cause of death in CLL is infections.

The leading infection is pneumonia.

The leading bacteria that causes pneumonia is what old school doctors like me called pneumococcus, but now more commonly answers to streptococcus pneumoniae. This invader can also cause a host of other infections including meningitis and sepsis.

This vaccine offers an extra modicum of protection and for that I am grateful.

I have been suggested the off label use of this vaccine for years in adults, Now the FDA has caught up so it should be less of a stretch for a primary care provider to OK the shot.

Here's the pasted text:

FDA Approves Pneumococcal 13 Vaccine

From the PharmaLive.com News Archive - Dec. 31, 2011

From UPI Health News (Business) (December 31, 2011)

Prevnar 13, a pneumococcal 13 vaccine, was approved by the U.S. Food and Drug Administration for people age 50 and older to prevent pneumonia, officials said.

Dr. Karen Midthun, director of U.S. Food and Drug Administration's Center for Biologics Evaluation and Research, said pneumococcal pneumonia, caused when the bacterium Streptococcus pneumoniae infects the lungs, is the most common disease caused by this bacterium in adults.

When the bacterium invades parts of the body that are normally free from germs, such as the blood or spinal fluid, the disease is considered "invasive," Midthun said.

"According to recent information for the United States, it is estimated that approximately 300,000 adults age 50 and older are hospitalized yearly because of pneumococcal pneumonia," Midthun said in a statement. "Pneumococcal disease is a substantial cause of illness and death. Today's approval provides an additional vaccine for preventing pneumococcal pneumonia and invasive disease in this age group."

The new use for Prevnar 13 was approved under the agency's accelerated approval pathway, which allows for earlier approval of treatments for serious and life-threatening illnesses, Midthun said.

The pathway allows for the demonstration of effectiveness of a vaccine using an immune marker that is reasonably likely to predict clinical benefit.

There are lives in the balance

2012-01-03T13:32:00.000-08:00

A painful truism in the practice of medicine is that nothing is ever casual.

No off the cuff remarks or comments are allowed. Non-medical people don't always get it. When a doctor says something, whether it is the clinic or the hospital or on the phone or in an email or during a meal or a hockey game, it has the potential to alter lives and can lead to actions that simply can't be undone. There are lives in the balance.

This is not the familiar G-d delusion that afflicts too many in my chosen field. It is the recognition of the awesome responsibility that comes with a little knowledge.

I don't for a minute believe what I say alone determines what others do, but I would be naive and self deceiving if I said I don't think I influence choices.

Today I was touched to the wick of my soul by a post from my friend Wanda on her Caring Bridge site by her thanks for nudging her towards her courageous choice of an "experimental" transplant protocol at Stanford.

I am simultaneously blessed and challenged by this burden with its mix of joys and sorrows.

This is not a burden that I can or would want to put down. A doctor is always taking a risk with someone else's health when he or she is less than thoughtful with a medical comment.

So my dear friends, please understand how hard I have worked to lighten up, to be comic force in the dark world of leukemia and all the existential decisions that diagnosis engenders. It doesn't come naturally. I am just fighting to balance both my innate and professional tendency to lead with all that possibly can go wrong.

I love what I can do and the world that my leukemia has opened to me.

I just get tired at times.

Heck, I am no G-d.

I am not even a specialist.

Answer from Dr.Steven Weinreb on why the quick transplant

2012-01-02T13:29:00.000-08:00

Dr.Weinreb was kind enough to save me the phone calls and letters and post his response to my question as a comment. I have pasted his words here as I know some of you don't read every comment on my site.

Chaya Venkat and others have written about opportunity costs. Timing is so critical. Windows for many treatment options open and close quickly and with no warning. I always say you should get a transplant about a month before you need it, because when you need it, it may be too late.

Dr.Weinreb clearly outlines his reasoning for his decisive and sensible and courageous move.

I like to think I would have done the same.

Thanks, Steve for your post. Best wishes in the new year. Stay in touch.

Dear Brian

Thanks for the kind words! I really had no choice. I relapsed 6 moths after Rituxan/ Fludarabine. I have an agressive disease, one that appears to be unresponsive to traditional therapy. We quickly found a molecular unrelated match, and i had no time to wait. The new therapies are promising, but the timing wasn't right for me. I am at day (+) 100, feeling well, no sign of GVHD. Good luck!
Steven

Herd Immunity and transplant decision

2012-01-01T11:35:00.000-08:00

Dr. STEVEN L. WEINREB is a young 52 year old board certified hematologist and oncologist with CLL who recently underwent a hematopoeitic stem cell transplant in an effort to cure his cancer.

What he wrote in his op-ed piece in the New York Times is an important variation on my mantra of us all being in this together. He argues persuasively for the value of everyone eligible getting vaccinated so that all our communities reach the critical mass, passing the threshold for "herd immunity" that protects those like us and newborn and others with weak immune systems who can not protect ourselves.

Please read and share his opinion piece as I have done. This editorial is an essential teaching especially this time of year. I am grateful that he wrote it and that the New York Times published it.

Dr. Weinreb is obviously bright and thoughtful, a big picture kind of guy, which make my musings about his particular circumstances even more intriguing.

What I find so interesting is that the doctor had chosen about three months ago a transplant as his way out of the CLL morass. Knowing none of his circumstances, I am itching to speak with him and pick his brain on why he, as did I, chose the most dangerous of all paths.

Maybe he'd disagree that a transplant is the most dangerous way to go.

I have argued that doing nothing is sometimes the most risky way to go. With a transplant, it's a 50/50 proposition that I am around in 10 years. Without it, I am waiting on a miracle.

Certainly throwing more toxic myelo- and immuno-suppressive chemo that the CLL clone has already proven it can tirelessly chew up and spit out, while our fragile marrow and immune cells take all the collateral damage is not only dangerous but foolish. A potential fatal misdirected drone attack, a self inflected wound. Too many cellular casualties from "friendly fire"can be the deciding factor in our final mortal battles.

But what if those were not his only alternatives?

Does Dr. Weinreb doubt the new miracle cures? Surely as a hematologist, he'd be ahead of the curve on the latest research on PCI-327654 and CAL 101 and GA-101 and lenalidomide and so many more. Did he see the paucity of bone marrow data and the short follow-ups and the infection risks as cautionary flags?

Had he run out of time or patience to wait for the perfect trial or to open his veins to yet another promising cocktail?

Had he been there and done that, tried one of the new pathway blockers or immune modulators and it failed?

Had he already set sail for a transplant in order to grab a new immune system and the treasure was too precious and fleeting to pass up?

Three months can be a life time in the quickly changing world of CLL research these days. Would his choice be different today?

Dr. Weinreb is sensibly not seeing patients right now, a time that I so well remember. I don't have his email address. I will try to reach him by a call to his office or an old school USPS letter, doctor to doctor and see if he might write a guest post here.

One more thing to do that was not on yesterday's to do list.

Happy New Year to all.

We are all in this together. And that is a good thing.

To do list

2011-12-31T13:33:00.000-08:00

If I put it online, I will do it.

I like to do "to do list". It gives me this warm false sense of making progress. It's virtual progress, but if the illusion of tackling a problem is good enough for our do nothing congress, can't I borrow a page from their book.

Here goes, my immediate, no big picture but the small details that all add up hopefully to something positive at the end of the year, get moving soon list.

CLL Related:

CLL is so often on my front burner (the important and urgent quadrant of what needs to done). It would be so great if only it was on the "give back" burner.

Clinical trial:

1: Stay on top of my insurance issues. (Calls, emails, documents, thank yous)

2: Stay on top of getting medical records (UCSD, CoH, and St. Jude)

3: Update and fill out my clinical summary

4: Research where to stay, where to eat (vegan), and where to pray (Kaddish every Friday night for my dad)

Disability Insurance:

Complete my part of the same form again that keeps roof overhead and food on the table and get the doctor's part to my doctor

CLL Hypnosis Self-Help Audio Files:

1: Read my friend Dr. Larry Deutsch book and help plan how we can get these files to everyone who needs them while raising money for CLL research.

CLL ASH Education for Primary Care Providers:

1: Final Video editing by Tuesday

2: Education text between video clips

3: CME Q+A

4: Reference checks

5: Posting on line

CLL ASH for Education for Patients

1: Clean up and post links to a yet to be established U-Tube or such link. I think my son can help with this.

CLL Research:

1: Get back to my basic research on how CLL trials are conducted. I have only tabulated 10% of the data so far.

CLL Conferences:

Looking into Niagara Falls again and ASCO in Chicago. Dreaming (and researching) funding for the European Hematology meeting in the spring

CLL Adventures:

Cancel Hawaii. More on that later.

CLL CME Lectures:

Prepare three powerpoint lectures on CLL, transplants, and anemia for other doctors that I will giving in Las Vegas and Anaheim this spring

This does not include the daily intake of CLL related emails and articles.

Not wanting to sound too chipper, I am happy to be this busy. It feels alive and purposeful.

I think I will put off on the non-CLL parts of the list.

Again.

Blue Angel

2011-12-30T21:56:00.000-08:00

An angel swooped in from my past and called from Blue Shield with good news. My former part time case manager who helped me so much with my transplant three years ago got things back on track with clear lines of communication and clearer directions on what is needed for the answer on whether Dr. Byrd's consult costs will be covered by next week.

More importantly, she has promised to stay involved when I apply for the trial coverage.

I am very grateful, and cautiously optimistic and I am very pleased with Blue Shield.

All's well that ends well.

BLUE SHIELD BLUES

2011-12-30T12:51:00.000-08:00

I am being very nice, honest, though at times it is not easy, answering the same questions over and over again after waiting on hold to cheery recordings of all the same tips about how to save my insurance company money.

Today is my third day of hours on the phone with Blue Shield of California member services, prior authorization, appeals, case managers, and supervisors, and who knows what and who else trying to get authorization for the Ohio State University consultation with Dr. Byrd for my clinical trial with PCI-32765.

It seems that their right hand doesn't know what the right wrist and the right pinkie is doing.

It's an appeal. It's a prior authorization, It's wrapped in with the clinical trial. No, it's back to a prior authorization. It's Super-Conflated.

After hours on hold and multiple lateral passes yesterday, I thought that when I finally got a phone number and a reference number from a case manager for my local oncologist to use with clear instructions of what he needed to do, the path was clear to a yes or no.

Boy, was I naive. His nurse got the same polite run around that I did today.

But everyone (even me), is very sweet and tries to be oh so helpful.

Remember all I am trying for is authorization for the relatively cheap mandatory consult to assess whether I am a candidate for the trial, not for the pricey trial itself. I understand quite sensibly that once it is ascertained that I indeed qualify, OSU will then apply for the trial coverage, and that is the real critical action. I am quite confident that will work out. And I am very confident that I will be in the trial by February.

I suspect, again probably naively, that the authorization for the trial itself is a more traveled route and an easier path to navigate.

This is just a fun and informative diversion in learning how the other big blue (not IBM but Blue Shield or BS) works.

The trial is the goal. I can pay for the consult, but not the trial. This is the practice run. I am keeping detailed records. I am hoping that I don't need them.

I am keeping my eyes on that prize. For a chance for real durable disease control. The excitement of a healthy and lengthy old age, a new drug that offers a true truce with my leukemia: these joyful possibilities almost get lost in these side battles.

I remain realistically confident that 2012 will be the beginning of the end of CLL struggles.

And very polite and helpful.

Death and Renewal

2011-12-21T23:46:00.000-08:00

Today is the winter solstice, the shortest, darkest, blackest day of the year.

Six months ago on June 21, the first day of summer, the brightest longest day of the year, I lost my father.

I have said Kaddish (the Jewish prayer for the dead) every Sabbath for him except thrice where a could not find a minion, the 10 Jews necessary to formally pray. It happened once in Cusco, Peru, once in a distant suburb of Dallas near the airport, and once on the road in Arizona. Other than that, I have enjoyed hospitality at all types of temples and synagogues all over the USA.

Though Kaddish is prayed ostensibly to guide his soul to a well deserved place of rest, it is more for me to remember what a son received and a father gave. We were good friends and honest counsel for each other, especially over the last part of out 60 years together. I miss him so much it still hurts .

I lost a sweet friend one year and one day ago. Another father but of three young children, not of one older son about to enter his seventh decade like my 84 year old father. Robert died of CLL too young, too soon, too unfairly, and with too much love left to give and receive.

Not much in life is guaranteed, but one thing for sure is that the days will grow longer and the nights shorter.

That must be enough for now.

The world of CLL is changing fast and it's good.

For the last week, I have wrestled long hours with many demons in the form of questions of insurance and chance and convenience and travel and risk and unknowns and timing and money.

I have had help from so many especially my family and a few dear friends, but also my insurance broker and my case manager and my local oncologist.

In CLL, there are three types of crises. The disease related ones, the treatment related ones, and the decision related one.

I have just slayed the last one- for now. I have made my next treatment decision.

I am gambling everything on getting into and doing great in the Ohio State University trials that include PCI-32765.

I am full of hope.

Tomorrow will be less dark than today for sure.

Fewer long shadows, more sunlight.

PS I have not forgotten my promise of a recounting of ASH. First I needed to heal myself. Or at least decide what was my my chance of getting to that place.

Home from ASH

2011-12-14T00:32:00.001-08:00

Finally home and ready to sleep after a long late meeting of our local CLL support group

Let me just say that the world of CLL is changing, and changing for the better.

Mechanistic understandings of what goes wrongs in the CLL clone and how to right it are starting to be translated from the bench to bedside.

Nothing is definite, but things look better than any time in the past.

More soon. I promise.

ASH Day 4

2011-12-13T09:46:00.000-08:00

Yesterday was 13 hours of CLL, with a 1/2 break to discuss MDS.

I am heading home today with hope and information overload and sleep deprivation.

I will be posting some reviews of important sessions here soon, and after some editing, some audio and video over the next few weeks.

My friend Andy Schorr interviewed me as a patient/searcher and I will post that video later too.

But first I need to get home to my own raw food and some sleep.

Live from ASH ( Even Quicker interlude)

2011-12-12T12:56:00.000-08:00

Looks as if the 11 q deletion is a much more complicated story than just ATM deletion.

This is good news and is one tiny step on the road to personalized therapy. More to come. Off to chat with Dr. Adrian Wiestner from the NIH.

Live from ASH (Quick interlude)

2011-12-12T10:18:00.000-08:00

Before I rush off to 90 minutes covering several research papers with new data on the genetics of CLL, I thought I would share want will be a theme in upcoming post.

There is greater and greater light being shone on the misguided pathways in CLL. Messages to be fruitful and multiply and live a long life are heard loud and clear. Messages that you need to change your evil ways, that it is time to let a new and more healthy well rounded clone take over the real estate that you are hogging in your malignant old age, these messages fall on deaf ears (or actually on corrupted signaling pathways).

But there is hope to realign this failed process.as there are new targeted ways to unjam the circuits and turn up the volume.

Progress is being made.

Gotta run. Stay with me.

Live from ASH

2011-12-12T08:39:00.000-08:00

So much to share- mostly very good news for those fighting CLL or with family and friends facing similar struggles.

The problem is trying to blog about the meeting during the actual meeting is similar to trying to text while playing hockey. Something is going to go wrong.

Makes me understand why people tweet.

I will have video, audio, and text to share. I am even being interviewed myself.

Let me me just tease you by sharing that this is a most promising time ever for CLL research.

Stay tuned. Stay strong.

We are all in this together.

Brian Koffman- your faithful cub reporter live from ASH 2011

Insurance woes with Clinical Trial NCT01217749 at OSU using PCI 32765 and Ofatumumab

2011-12-05T17:50:00.000-08:00

It looks like a tough decision I made to take the next step in my treatment path could be undermined by the big bad insurance company and the university teaching hospital with its inflated fees.

Here is what I wrote my online friends in the CLL community. This is aggravating stuff, but not the real bad stuff. Bad stuff is crashing or skyrocketing counts and worse. This is about money and a tilted system of health insurance. What could be bad, but I am not there yet is the removal of choice, the removal of a hope. I would hate that, but I am not there yet.

Soon I will post why this is my favored course of action today, but right now I am just trying to find a way to make it a realistic possibility. This is only the beginning. The door is not shut yet. I just need the pass code. Or the route to the backdoor. Or....

Hi,

My CLL needs treatment again, and after much thought and research, my first choice is Clinical Trial NCT01217749 at OSU using PCI 32765 and Ofatumumab, BUT my insurance, ANTHEM HMO covers nothing non emergent out of state.

What I understand about the trial is that the meds are free but everything else (usual standard of care is the coy term used) would be at my expense at the wrack rate- pricy for the individual payor (unlike the insurers who often pay pennies on the dollar). Labs, doctors' visits, BMB, CT scans all would be my responsibility. Maybe over a $100,000 for the whole deal.

Do I have this right?

Any advice?

Is it possible to negotiate to get a discount rate or a flat rate for the study?

Is it possible to get the bulk of the work-up done in my home state where my only cost is the co-pay?

Any other thoughts? Insights?

It is hard enough to make a treatment decision, even it is a preliminary and tentative one.

As the old joke goes: Besides bankruptcy, what other side effects does this treatment have?

Thanks as always. I bet there is a way to make this trial happen if it should. Just another challenge. Compared to CLL, this should be easy.

On a less challenging note, I am excited to be off to ASH next week as a accredited reporter (I keep picturing Jimmy Olson at the Daily Planet). Lots of good stuff on CLL especially PC! -32765 and CAL 101 and lenalidomide. In addition to trying to save my own skin by learning the latest on CLL and transplants and ITP, I am looking to help other family docs learn more about hematology and will be videotaping interviews with several experts.

Email if you have any burning questions or thoughts on what you or a good primary care provider should know about blood disorders. I will let you know when I post the videos.

We are all in this together (well maybe not the insurance companies).

Brian

I always have the rebbe to help me:

"Life is a very narrow bridge. The important thing is not to be afraid".- Rebbe Nachman of Bratslav

Other blogs about transplants

2011-11-27T20:38:00.000-08:00

I wrote this answer to a patient on ACOR or Association of Cancer Online Resources to her questions about other's experience with transplants and CLL with the bad prognostic marker of 17p del.

It sobered and depressed me to have to divulge so much bad news. I believe it is better to know. Not every one agrees,

Hi La Verne

A HSCT is narrow road, but sometimes it's the best road and sometimes it's the only road, but it is always a narrow and difficult road.

Have you contacted BMT-TALK@LISTSERV.ACOR.ORG? That's a start.

Here are some blogs:

Mine is bkoffman.blogspot.com ( not 17p but 11q CLL). I am here and doing OK 3 years post a rejected HSCT.

Wanda Zimmer is still in first 100 days with 17p del CLL at http://m.caringbridge.org/visit/wandazimmer

Chonette Taylor and Dennis Bayer have done pretty well, but they don't have a blog that I know.

And Susan's with CML http://www.caringbridge.org/visit/susanleigh is many years out, not without challenges, but living a big full life.

My friend Wayne has done super well with both CLL and MDS post transplant: http://www.carepages.com/carepages/MyTransplantForCLLandMDS/updates/3020524?client_code=mdanderson&ipc=mur

Paul's story is helpful and pretty calm, but with some recent bad news: http://www.caringbridge.org/visit/paulplunkett

IF YOU DON'T WANT ANY REAL BAD NEWS, STOP HERE.

Robert was good friend with 17p who died suddenly post transplant: http://www.caringbridge.org/visit/robertpassananti

So did PC VENKAT, a hero of mine. He was also 11q del like me. See http://www.journal.clltopics.org/ Tough stuff

Prepare for a wild CLL/ transplant ride with Greg: http://www.caringbridge.org/visit/maddog23 He's a great writer too.

Another whom I know is Aaron who has had a tough time: http://www.caringbridge.org/visit/aaronstransplantjournal

My friend Ron didn't make it. http://www.caringbridge.org/visit/rongottula

My memory is distorted. As a doctor, I am often guided by the worst cases, as they are the ones you must learn from to best avoid repeating the dangerous moves.

I am sure that I have forgotten other voices that have guided and comforted me by sharing their trials and trails. Please forgive me.

I am so sorry to have included so many tragic stories. I personally know or knew many of these brave souls, and yet I still chose to do a HSCT and will likely do a second one. 50% or 60% odds of being alive in 10 years are way better than 0-10% if you are 17P del. Then again, statistics never predict for an individual but only for a group

Still despite all this bad news, actually odds are in your favor, but it is never easy. It is alway complicated and tough to decide and tougher to do.

Stay strong

We are all in this together. Let me know if I can help- if I haven't too scared or depressed you too much.

Brian

I have a head cold

2011-11-26T13:02:00.000-08:00

Many years ago, I read an article about Frank Sinatra having a cold. It was a big deal, with recording and performing dates upcoming. And for a man not known for his calm demeanor at the best of times, his sniffles didn't make the job of his entourage any easier.

I knew I was at risk when I was stuck in the waiting room for a routine dental hygiene appointment (trying to be healthy and proactive with my teeth and gums) with a young child joyfully coughing and sneezing away, and with her mother dutifully reading to her. Every tenth or twentieth discharge of millions of viruses into the closed atmosphere from her snotty kid, mother would suggest that she cover her mouth, which was never actualized. I guess the thought counts. I guess I need to carry a N95 mask with me at all times, especially in flu season. I guess I now will worry how my battered immune system will handle this latest assault with nearly all my antibodies missing in action. Maybe my borrowed IVIG next week with be my rescuing cavalry charge.

My chief complaint is mostly a miserable runny stuffy sneezy nose, just like the little girl I shared the air with a few days ago. Throw in some mild malaise and a not so bad sore throat and you get the picture: a head cold.

My usual diet of cold raw veggies is of no interest when I feel this way. I want hot soup and tons of tea, and even more time to nap.

Hopefully I have only a few more days or less of this gentle misery ahead of me. Hopefully my chest is not the next battlefield.

I haven't time for this. I have work to do, but I also have bigger zucchinis to chop.

This too will pass.

The Grand Canyon Mule Ride: Taking a risk, doing something different, and facing our fears

2011-11-20T13:41:00.000-08:00

I might also add descending more than a mile into the pit and reemerging impressed with what is possible and what is unknown and unknowable.

Fighting the hidden enemy- My big mesenteric CLL nodes force my hand

2011-11-16T00:14:00.000-08:00

The disconnect between how well I might look and feel and the growing burden of cancer in my gut challenges my intuitions of how the world and leukemia works. Fighting the hidden enemies is my new imperative, one I can not ignore or wish away.

My doctors Forman and Kipps disagree on most everything, EXCEPT that I need therapy. Soon.

I will be spending the next 2 to 3 months deciding what to do next.

Doing nothing is not an option. Or at least not a very wise option, though it is certainly the most appealing in the short term.

I will not let this decision consume me, but will try as best I can to detach myself from the process and argue as I would for a friend or patient.

I will try to be calm in the face of imperfect choices and incomplete data.

I will try to look beyond the immediate horizons to the best possible future.

I will decide and move on.

I will, in the words of Jon Kabat-Zinn: Meditate, Act and Be Aware

Me and Fernand Leger: Pre and Post diagnosis of CLL

2011-11-13T22:11:00.001-08:00

November 2011: Detroit Institute of Arts, Detroit, MI

March 2005: MOMA, NYC,NY

The bottom picture was taken when my son Ben and I were on the east coast looking at colleges, and well before my cancer was even a glint in my eye

The second was shot when I was lecturing this week in Motown, after more than six years of fighting my CLL and ITP and after the very recent challenge of nodes pushing 10 centimeters in my gut.

Have I changed much? You be the judge.

I still have my grey hair and mustache. I still wear dark sweat shirts and grey scarves, though the new scarf is from my visit to Egypt and not from a mall.

I still visit art museums wherever I travel, even when it is too cold and too difficult and makes no sense. What did art ever have to do with sense?

I still gravitate to the modern art, and still love what Leger can teach us about being human souls in an increasingly mechanized and alienating world.

I am still pushing for more. To touch and to feel more: longer, deeper, harder, and softer, much softer. To learn. I am still so hungry,

Tomorrow I consult Dr. Forman about how a second transplant, still the only cure for my CLL. I will ask him when and how that fits into my treatment mix.

All that is missing is a third photo of me beside another painting by Leger, perhaps next time in Biot, France where his national museum is to be found.

But that photo is at least five years off.

That picture will be of me post CLL. Cured. Or at a minimum in a very long term deep remission.

That picture will not be hiding any internal nodes or diseased marrow. You could zoom in using a billion pixels and never find a trace of my evil clone ready to explode again. because there will be no rogue sleeper cells.

In that picture my hair may be thinner, I may be thinner, but my smile with be broader and my eyes brighter.

In that photo I will be in my 70s, but I guarantee I will still be hungry for more art by Leger to delight in and more life to share.

Stay with me until I share that photo. I guarantee a wild, informative and entertaining ride before and for many years after that next snapshot is posted.

Live from Dearborn: Travelog and a Gentle or Heavy Approach. Very Slight Revision

2011-11-12T14:53:00.001-08:00

Rivera Court in the Detroit Institute of Arts

Karl asked I post a slightly more polished version with his signature.

It's worth reading twice.

I am in Dearborn, having just finished two days of lectures and little thought about CLL- Ask me about sleep apnea or migraine or circadian problems and I am all over it, but CLL has been happily off my radar screen for a day or two.

I am loving Hockeytown. There is a big hockey tournament in town so kids as young as 6 are found all through the hotel carrying their gear with help from lots of proud moms and dads.

There is also a Star Trek convention here.

Is this great or what?

Saw the powerful Diego Rivera Courtyard at the Detroit Institute of Arts and went to a wonderful activist Sabbath service in an old downtown synagogue, then enjoyed a decent raw organic vegan meal. I was the only one there over 30, and the patrons were diverse to say the least. Next store, crowds in T-shirts and shorts or clown outfits were braving the bitter cold for what seemed to be a rave- I asked one of the freezing guys waiting in the que to get in: DJs, circus, lots of dancing and laughs. Sounds like a rave to me.

Tonight it's Arab food. Dearborn has the largest Lebanese community on the USA.

And I leave for the airport at 4:30 AM. Almost not worth going to bed.

Here is Karl's revision:

Re: "If treatment for cure is necessary; is it possible? If possible, is it
necessary?"

~ Dr Willet Whitmore (on prostate cancer)

... Which seems to apply pretty well to the indolent lymphomas and CLL.
However, for most types of indolent lymphomas treatment is eventually, but
not always, needed. So there are two basic approaches to clinical care and
research.

One being to manage it with treatments that have lower toxicity - and only
as needed.

- With this objective it can be argued that one should treat earlier (when
the need to treat is not evident but expected soon) in order to have a
better chance for the less aggressive therapies to be effective - but also
because milder therapies generally are not as fast-acting and advanced
lymphoma can sometimes require a timely response.

The second goal is to treat the indolent lymphoma with intent to induce a
durable remission (and dare we say it, with a potential for cure) with more
aggressive combination therapy.

- Here treatment is generally deferred to when the need for treatment is
clearly indicated. However, waiting until the condition becomes too advanced
(bulky, causing symptoms) can sometimes limit therapeutic options and lower
the odds of achieving the best results.

Which approach is best? It's sometimes argued that it's better to conserve
one's "bullets" to preserve future options. However, it is also noted that
having a long remission increases your options - allows you to use even the
same therapy again when therapy is needed, and that this might better
preserve therapeutic options and lead to less treatment resistance compared
to using milder therapies more often.

So this is a big reason why --- for the indolent lymphomas --- there is NO
standard of care - no easy, one-size-fits-all formulas for how and when to
treat.

So informed choice is a process, which requires an objective understanding
of our clinical context:

1) The natural history - or anticipated clinical course for your type of
lymphoma,

2) The potential benefits and risks of the current standards of care,

3) An appreciation of the unique and sometimes changing individual risk
factors - such as one's age and performance, the changing behavior of the
lymphoma, or responsiveness to prior therapies.

The clinical context can influence how much risk is appropriate to take when
treating the lymphoma and also how appropriate it might be to ask about and
consider clinical trials.

Karl Schwartz
President, Patients Against Lymphoma
www.lymphomation.org

Gentle or Heavy Approach to CLL

2011-11-09T13:13:00.000-08:00

Karl is an excellent researcher and a very clear thinker.

Take a look at what he has to say about the choices in an indolent cancer.

What would you choose?

This is the generic question I face.

Do I hit the CLL hard and then dash to a transplant, and be cured or die trying or perhaps worse get a new difficult and sometimes incurable disease, graft versus host?

Do I gently rap the cancer's knuckles with a slightly bigger stick than the rituximab which is no longer doing the job, but hold off on the big clubs to avoid peripheral damage to my already compromised marrow and immunity? Probably that means a clinical trial.

Here is how Karl lays out the options. I will write soon on the specific details of what I need to deal with, what I can't ignore.

"If treatment for cure is necessary; is it possible? If possible, is it necessary?"~ Dr Willet Whitmore (on prostate cancer).

Which seems to apply pretty well to the indolent lymphomas and CLL.However, for most types treatment is eventually, but not always, needed.So there are two basic approaches to clinical care research for the indolent
lymphomas.

One being to manage it with treatments that have lower toxicity - and only
as needed.

- With this objective it can be argued that one should treat
earlier (when the need to treat is not evident but expected soon) in order
to have a better chance for the less aggressive therapies to be effective -
but also because milder therapies generally are not as fast-acting and
advanced lymphoma can sometimes require a timely response.

The second goal is to treat the indolent lymphoma with intent to induce a
durable remission (and dare we say it, with a potential for cure) with more
aggressive combination therapy.

- Here treatment is generally deferred to when the need for
treatment is clearly indicated - however, waiting until the condition
becomes too advanced (bulky, causing symptoms) can sometimes limit
therapeutic options and lower the odds of achieving the best results.

Which approach is best? It's sometimes argued that it's better to conserve
one's "bullets" to preserve future options. However, it is also noted that
having a long remission increases your options - enable you to use even the
same therapy again when therapy is needed, and that this might preserve
options and lead to less treatment resistance compared to using milder
therapies more often.

So this is a big reason why --- for the indolent lymphomas --- there is NO
standard of care - no easy, one-size-fits-all formulas for how and when to
treat.

So informed choice is a process, which requires an objective understanding
of our clinical context:

1) the natural history - or anticipated clinical course for your type of
lymphoma,

2) the potential benefits and risks of the current standards of care,

3) an appreciation of the unique and sometimes changing individual risk
factors - such as one's age and performance, the changing behavior of the
lymphoma, or responsiveness to prior therapies.

The clinical context can influence how much risk is appropriate to take when
treating the lymphoma and also how appropriate it might be to ask about and
consider clinical trials.

All the best,

~ Karl

Big nodes

2011-11-08T17:15:00.000-08:00

My MR showed that my gut nodes that have grown too big, and need attention. Counts are good except for a mild persistent anemia.

Kipps says I shouldn't ignore them or the ones he can palpate, but there is no urgency.

The next step is a bone marrow biopsy and then probably a clinical trial at UCSD. All in the next 60 -90 days or so.

Actually the next step is a nap. I always think clearer after a nap.

And I write better too.

It would be so great to get a long respite from decision overload. My longest rest from having to do something about my CLL was about first 12 months after I was diagnosed, and that hardly counts as I was running around getting contradictory opinions on what to do and not to do.

I could use a break from this chess game.

But that's not to be, and so I will nap and research and meditate and move on.

It is a much better time to be pushed to treatment than say 4 years ago when I went for my transplant. Many more effective low toxicity choices now.

But first, my nap. I love to nap, don't you?

ZZZZZZZ

You give me reason to live, you give me a reason to live, you give me reason to live!

2011-11-06T10:04:00.001-08:00

My daughter and granddaughter in the California Redwoods

Patty and I went on one of our best trip ever. It wasn't exotic China, not romantic Italy, not Zen Japan, not super natural New Zealand, not historic Prague or musical Vienna or friendly OZ, not ancient Israel and Egypt, not the castled United Kingdom, not magical Peru, not the grand Grand Canyon, but gritty occupied Oakland because that's where my daughter, son-in-law, and granddaughter live.

That young lady with the pink bib in the picture is another reason to soldier on.

I have no bucket list. As I have said before, I have way too much joy in each day and way too many things left undone to imagine that a list of the top 10 or top 100 or 1000 checked off would signal it's OK to check out.

But seeing that four month old under the marriage chuppah might be a moment when I can say that I have seen enough.

Nah, make that holding my first great grandchild. I should be in my 90s or close. If I live long enough to see that baby's bat mitzvah, I would be around the century mark.

In any case, CLL would be a remote memory. What a blessing that would be.

But now CLL is front and center. Tomorrow I have my MRI to see if my CLL is trying to launch a sneak attack from inside enemy lines, my mesenteric or gut nodes. If they have grown too big despite another course of rituximab, I need to knock them back to size while I still can. If they become "massive" ( >10 cm) they become harder to kill. In these large niches, they have more supportive infrastructure such as nurse cells and they are just tricker to reach with what ever toxic cocktail I have planned for their last meal.

That means choosing a new treatment strategy that keeps one eye on my ITP, and another on my sleepy bone marrow and my third eye on a future transplant redux- probably my only chance to live long enough to see a fourth generation.

I wish there was another way, but I am not convinced. Kinase inhibitors such as CAL 101 or immunomodulators such as Revlimid might buy some time, but not a cure. They don't promise me another 30 years. Only a second transplant gives me a 50/50 shot at getting really old. But a transplant demands a big price for that shot of redemption and a second transplant demands even more.

I have been catching up on hours and hours of reading about my disease and transplant. CLL remains thankfully a hot research arena. Much is changing fast, but is it fast enough? I doubt it, at least for me and those of us who might need treatment soon.

Those who have followed me on some or part of my six year journey know this is a repetitive loop- my anxiety before a scan or bone marrow biopsy, my cogitation over my next move, my lament about the slow progress and the constricted choices, and my hunger for life.

Thanks for joining me on the trip. The CLL community and others facing similar challenges are among the many gifts in my life

I've got too many reasons to live and one very young, and beautiful new one.

Fitness and Cancer: A Guest Posting

2011-10-31T21:35:00.000-07:00

Please take a look at this guest blog by David Haas who can also be found at :http://www.mesothelioma.com/blog/

In the way of self introduction he says:

“I am a cancer patient advocate who writes and researches for the betterment of others.”

His topic for today's posting is fitness and cancer.

I know first hand that my transplant doctor, Dr. Forman, insists that all his patients walk on the transplant floor. That meant for me donning a mask and gloves, and waltzing through the nursing corridors with my heavy laden IV pole attached to my left arm through my PICC line even when I felt like crap.

The nurses, who should know, say that those who walk, walk out.

I know there are many benefits to exercise starting with this chestnut courtesy of Dr. Himle:

"Depression has a lot of trouble finding a moving target,  it's outstanding at hitting a stationary one."

Take a look at this link http://www.lymphomation.org/CAM-diet.htm#exercise for more on the exercise and cancer topic. I am a believer.

Please let me know how you feel about this idea of guess blogs.

Here's David's writing.

Fitness and Cancer

It stands to reason that someone who has been recently diagnosed any kind of cancer including common cancers such as breast cancer and skin cancer and even rare cancers like mesothelioma wouldn't want to spend a lot of time exercising. The shock of having been diagnosed with an often fatal disease combined with the sickness, pain and fatigue associated with said disease can all but destroy any motivation that one would have for remaining or becoming physically fit. Physical fitness is important for everybody, even those who are suffering from cancer. Recent studies have found that while a regular exercise regimen is by no means a miracle mesothelioma treatment or a cure for any other kind of cancer, it has helped aid the recovery and improved the prognosis of many cancer patients.

Two of the most common and debilitating side effects of most traditional cancer treatments are fatigue and loss of muscle strength. Cancer treatments such as chemotherapy tend to make patients feel very fatigued, so naturally they do not want to spend a lot of time doing much of anything, let alone engage in any kind of exercise. The muscle weakness commonly experienced by cancer patients naturally results from this fatigue. As they are deprived of exercise, these patients also miss out on some of the benefits that come from being physically fit including improved sleep patterns, increased energy, decreased depression and a generally improved sense of wellbeing. In other words, exercise can help a cancer patient or cancer survivor get his or her life back.

One form of exercise that many experts suggest for cancer patients is lightweight training. It's already been established that many cancer treatments cause a weakness in the muscles, so a weight-training program has proven to be very beneficial for many patients undergoing chemotherapy or similar treatments. It is not recommended that anyone who is experiencing fatigue or muscle weakness attempt any rigorous weight training exercises, but there are plenty of light exercises that can be done that will still help to build lean muscle mass and improve the overall fitness of cancer survivors.

The American Cancer Society has become so convinced by the benefits of exercise for cancer patients that they have implemented moderate exercise programs for patients who have been newly diagnosed with cancer. These exercise programs can technically be considered palliative therapy, which means that while they will not cure or treat the cancer directly they will at least improve the symptoms of the disease or treatment.

Sinus Pain?

2011-10-31T13:55:00.000-07:00

I am tender with occasional severe jams of pain to the right of the bridge of my nose. Otherwise well. No fever or cough or runny nose, but the pain really grabs me. And I am tender there too.

With my recent travels and all the coughing aboard the flights, my self diagnosis is a sinus infection. Migraines can masquerade as sinus headaches, but I have no such history. Neuralgia? Funny spot for that, but the pain fits.

Flying is not the best idea with sinus issues, but I started myself on a steroid nasal spray and I packed my trusty Levaquin and zithromax, and I am on my way.

My granddaughter is missing me and that's my priority. Besides it might be nothing and I am prepared.

More from Brooklyn- Kinase Inhibitors for CLL

2011-10-27T10:27:00.000-07:00

Except maybe for a transplant, a cure for CLL is still not around the corner and is not likely going to be a single magic bullet. Progress is rapid and exciting, but clinical application is slow and very very expensive.

What is more likely is that a series of lower toxicity, higher specificity, more personalized therapy will be coming our way.

If we choose wisely, and are on the happy side of the survival curves AND meet the strict entry criteria for a trial (set up to insure approval of the drug and not to help the patients in the study) or the very limited FDA indications for our therapy (established among other reasons to give insurance companies coverage to say no to our needs) AND can afford the possible calamitous expenses of these new approaches either through insurance or our savings, we may be able to keep going for a long long time.

Some of the options include the new generation of small molecules that inhibit pathways that are preferentially expressed in CLL cells. Often these drugs block the cross talk (BCR) with other supporting cells, making the cancer clone more vulnerable.

I didn't see any data in Brooklyn, but I heard reassurance that these oral drugs like PCI 32765 (as the manufacturer's web site says: "As a Btk inhibitor, PCI-32765 blocks BCR signaling in human B cells but does not affect T cell receptor (TCR) signaling") and CAL 101 (a selective PI3 kinase inhibitor) and others in the pipeline not only shrink the nodes, but that the rise in the white count when the clonal cancer cells are run out the nodes is only temporary and it too falls to normal, AND even the bone marrow gets cleaned up.

Few side effects, but the risk of infection is significant and seems to me is a bit underplayed.

These drugs are going to big part of the future of CLL management, but now they are only available in trials, and it seems that you need to stay on them very long term or the leukemia quickly flares up again. Nodes can flare up again almost overnight to bigger than they were before therapy But the argument on the other side, is that if they are so safe, no worries, why not stay on them forever. The drug companies love this logic, but that is true with a ton of other therapies from insulin to blood pressure meds.

To their credit, the drug companies are allowing patients to continue (for free) on the meds after the trials are closed.

Not close to a cure, still they are a big step forward.

For that I am grateful.

Brooklyn- The Bottom Line on the North American Educational Forum on Lymphoma

2011-10-11T12:37:00.000-07:00

The Lymphoma Research Foundation is to be commended on putting on another first rate conference.

What I like is that while it is totally oriented to help the patients and caregivers in the audience, it tells it like it is.

They may start at the very beginning of the story, for example retelling the very basics on how a mAB (monoclonal antibody such as rituximab) works, but soon they are into the gritty details on how it might be improved upon with the next generation mAB. They don't oversimplify.

Much, but not all is not sugar coated. It does try to be righteously upbeat, but like an an appointment with a good and clever oncologist, you somehow leave feeling positive about the bad news that was just delivered.

So let me hit some headlines.

CART19 therapy (the patient's own T-cells infected with a retrovirus to be re-educated to multiply and to attack B-cells and then re-injected into the same patient) out of U Penn has all the CLLers drooling. You knew that there would be a million questions.

Dr. Bruce Cheson tells it like it is: "The plural of anecdote is not data".

One case reported in NEJM does not signal a cure.

This approach has way too few and is way too new to say anything definite about.

Still it does prove it can be done, not much else. It is a proof of concept study and I am most grateful for its success.

I and others ask how long can you go infection free with no B cells?

Will the remissions hold?

Are there better targets that hit only the CLL cells and not all B lymphocytes? ROR1 for example?

Who is going to pay for this?

Answers are a long ways off.

The next trial will be taking in only 11 volunteers. Unlike nearly all cancer trial, where recruitment can be very slow and difficult, what do bet they will have no problem filling their enrollment? I bet they fill up faster than the pre-orders for the new Iphone.

Dr. Cheson gave the very opinionated and informative breakout talk on CLL.

He is out of Georgetown and has made many important contributions to our knowledge of how to treat CLL. One that he is particularly proud of is his bringing the old East German drug- bendamustine to the USA.

As he points out in communist Germany, bendamustine was developed in the 1960s to be an inexpensive alkylating agent instead of using the then expensive western drugs such as Cytoxan (cyclophosphamide) or Leukeran (Chlorambucil). Those are both off patent now and dirt cheap for a chemo drug. But ironically, we have Treanda (branded bendamustine), a very pricey child of mustard gas that may have some extra oomph in managing CLL and other hematological disorders. The TATA has become the Ferrari.

A short cautionary note before I share his thoughts and slides.

Chaya Venkat may have been the first and the most public, but not the last in understanding and teaching that there is great localism and nepotism in what treatments for CLL we are offered.

If you go to MDACC, you can bet you will be offered FCR and if you show up at Georgetown, expect to see Bendamustine on your infusion schedule.

That is not a bad thing. I want my doc to be very familiar with all the unfamiliar things that might happen to me with my treatment protocol. I want him or her to feel comfortable and upbeat about the therapeutic choice.

So please take into account Dr. Cheson's understandable pride and enthusiasm for his prodigy drug.

He admits that the data is not there yet, but he thinks it is trending to show that BR may be a better front line therapy that FCR.

Here's why.

More patients can get through a full course of therapy of BR than FCR. When you look at the data on FCR, always check how many make it though a full six cycles.

It is safer in patients with renal insufficiency.

There may be less treatment related ALL and MDS. That would be a very good thing.

He believes that auto-immune issues also will be less and that there is less marrow suppression and fewer infections.

Not everyone agrees.

I will post soon on what I learned in Brooklyn on new CLL therapies and transplants and survivorship.

And on the whole ambience and joy in seeing old friends. They even had good vegan food!

I took the redeye on Jet Blue from Long Beach to JFK and stayed awake on Saturday and got up early on Sunday before flying back home and I am glad that I did.

I think all those years as a medical student and intern and resident and fellow has trained me to get by on little sleep.

And to be always be learning.

Steve Jobs: Speculation on his cancer death

2011-10-09T11:17:00.000-07:00

Many have linked to Steve Jobs' commencement address at Stanford.

If you haven't heard it yet, do yourself a huge favor and listen. It is profound and wonderful and prescient.

His third "story" rings with a deep resonance that has rattled my walls and even broken a few windows in the fortress I had constructed to weather my cancer storm over the last six years.

He said:

"Your time is limited so don't waste it living someone else's life."

He quoted:

"Stay hungry. Stay foolish."

Listen again to it all:

http://www.youtube.com/watch?v=D1R-jKKp3NA

Fewer will have discovered this following link.

It is a balanced and very detailed medical discussion of Steve Jobs' alternative and conventional cancer treatments. Although still somewhat speculative on key points, it is non the less illustrative of the tricky path we all must take when faced with a medical crisis where there is no clear roadmap to a cure.

It is helpful to see how such a visionary deals and ultimately loses his battle with a personal health crisis.

http://scienceblogs.com/insolence/2011/10/steve_jobs_neuroendocrine_tumors_and_alt.php

56 years old is way too young to die. I was diagnosed at 54 and I know that fact personally.

Thank you, Steve Jobs for all you have brought in your too short life to my life and the lives of so many.

Machu Picchu

2011-10-05T22:02:00.001-07:00

Ben and I will let the picture tell the story

Home Again

2011-10-03T22:11:00.000-07:00

No plane trips for a while, just a mule trip up and down the south rim of the Grand Canyon in a few weeks.

I need to sleep and then will happily share what I learnt and didn't in Brooklyn

Brooklyn, Here I come

2011-09-30T11:49:00.001-07:00

Neither rain or thunder or red eye flights or lack of sleep or my own absent mindedness (forgot to take my meds yesterday for only the second time since my diagnosis- talk about being out of touch with the present) or just general travel fatigue can keep me from the Marriott by the Brooklyn Bridge for the North American Educational Forum on Lymphoma in Brooklyn.

It is the right thing to do, I will sleep a bit on the plane, and should sleep well Saturday night at the hotel. so I push on.

Maybe just maybe, I can get to a vegan poorboy sandwich at Blossoms or something more elegant at Candle 19 in Manhattan

Though it would much easier to just walk down the street to Juniors, Bill Clinton's old favorite, for the most amazing cheesecake. Parish the thought.

I will probably just have a salad at the hotel and eat the nuts and snacks I always bring along to ensure I don't go hungry in the badlands of NYC or Peru. The trials of a vegan voyageur.

The symposium will give me a chance to reconnect with old friends, and reinforce critical treatment information as I move forward.

Plus I am looking to develop a second career as a reporter for other primary care health care providers on the cogent material at these specialty conferences. That could be both fun and important work.

Let me share one last reflection on this needlessly tortured decision.

Everything has a cost/benefit ratio. Everything has unknowns in those ratios. You can spend considerable time analyzing and fact gathering to lower the influence of the unknowns and can insure at addition cost against some of the risks, but neither risk or unknowns can ever be fully eliminated from the equation. While this was a relatively trivial decision, it does reflect my process. Here I measured the potential long term upside clearly outweighed the short term risks and costs. And it will be sweet to see old friends.

Same process on an entirely different scale that lead me to an early transplant. And same way I will decide on the timing of the second one.

Look for me in New York.

Before October is over, I will have ridden a mule to the bottom of the Grand Canyon, hiked vortexes in Sedona, and done another one night stand in Dallas.

And somewhere in there I will catch some shuteye.

North American Educational Forum on Lymphoma in Brooklyn

2011-09-30T00:12:00.000-07:00

I have had a tough time deciding about whether to take a red eye to Brooklyn for the LRF (Lymphoma Research Foundation) patient conference just because I am so darn tired. The lymphoma folks always cover CLL/SLL as it is classified as a lymphoma. Confusing at first, but the cancer if of the lymph tissue and lymphocytes as it is in all lymphomas.

This educational forum will not likely present anything I haven't already heard or read, but it will review, update and give a fresh prospective.

They will be some fine speakers, but I have heard them all before, and there will be old friends, but there is always next year.

In other words, it will be worthwhile, but I could skip it and survive.

I chose the redeye to save some money. The hotel is expensive. The airfare isn't cheap. It's a lot of hassle, expense, and stress for one night in NYC.

And I am quite sleep deprived already between work and Jewish holidays and other commitments.

But if I can get a good night's sleep tonight, I think I'll go. I have until noon to cancel my hotel reservation, and still get a refund, so I can't delay the decision much longer.

If I do go, I will report on the meeting here.

I plan to not set my alarm tonight and sleep in. That may mean missing the 2nd day of Rosh Hashanah services. I think G-d would understand. She wants to see me rested and healthy.

Services today were challenging and positive. And the shofar blasts were stirring and a call to action, to heal the world, starting by healing myself.

Happy New Year Shanah Tovah

2011-09-28T23:16:00.000-07:00

Another year, another shot at redemption, another chance to get it right, another stolen golden moment to count my blessings, and another opportunity to savor the sweetness of living everyday.

Living with or without leukemia is still living and cause enough for celebration.

Shana Tovah.

I wish there were shofar blasts every morning. Clear the mind and lift the soul.

To all those I have failed over the last year, please find it in your hearts to forgive me.

To all those who have been so kind and generous to me over the last year, I am more thankful than you know. You light up my road and make it all so worthwhile.

I move forward, my first year as an orphan, the family patriarch now that my dad is gone. I miss him so much.

But I have a big and growing family of my own, full of love and joy and surprises, and dear friends, old and new, near and far, and rewarding work with good people.

Again I reminded of the words of that tormented master, Reb Nachman of Bratslov. Life is a very narrow bridge. The most important thing is not to be afraid.

Across that very narrow bridge, across the universe. One step at time, one day at a time. Slowly slowly slowly healing the brokenness in me and all the world.

Home Sweet Home

2011-09-26T08:18:00.000-07:00

After a week in Peru, and 4 days in Charm City (Baltimore), I am finally home in southern California.

Home prepared (notice I did not say cooked) raw meals and juices, my own bed and shower and kitchen table.

And my wife and kids (well the kids are a call or Skype away).

Life is sweet.

Trying to decide whether to trek cross country this weekend for a leukemia conference in Brooklyn. I am booked on a red eye to save the considerable expense of an extra night at the very nice NYC conference hotel.

So tired, but I really think it could be a wonderful meeting. Full of new knowledge and old friends.

I am good at the exercise, very good at the diet, nearly perfect at avoiding the toxins, but I stink when it comes to having a healthy sleep pattern.

A lazy day

2011-09-18T19:47:00.000-07:00

Our bags arrived a few hours after we had left for the magical mythical, mystical, and misty mountain retreat, Macchu Picchu. We now have enough clean clothes to change our attire 3 times a day until we leave. They were waiting for us on our return.

MP is a full 900 meters and the village of Aquas Calientes is 1300 meters lower than Cusco, so the air is richer and it is the beginning of the jungle which offers some amazing and terrifying hikes. We walked along the edge of a cliff in the jungle to the Inca bridge.

MP is a very special place. The Incas knew how to pick a good location, and then maximize its beauty. It is worth the effort and is surprisingly well run.

Back in Cusco late last night, we went out for dinner with some friends who were hiking on the area (Brie and Arash) which was sorta magical too in its own way. Meeting dear friends from SoCal in Cusco.

Today we caught up on sleep and rest and fluids and Peptobismol but not on oxygen. It is less than 70% of what we are used to breathing.

It was great to just sit in the central square and watch the world go by.

In Cusco's main cathedral there is a portrait of a Jesus at the last supper eating the traditional Pascal chinchilla or some say guinea pig. Judas is the spitting image of the deceitful and murderous Pizarro, not that Inca kings were angels by modern standards.

Peru's bloody history is worn on its colorful sleeves everywhere you turn.

It has not easy with no bags, hours on SKYPE with American Airlines, trying to buy replacement clothes and basics that fit average size American males and from someone that could give a receipt, altitude sickness, traveler's tummy, cold hotels, and sore knees. but it has been good, in fact very good to have this special time with my son in a wild and exotic place.

Tomorrow Lima, then home sweet home.

Found myself thinking about my leukemia only once for a few minutes on the trip when during a much need and much welcomed hot shower, I could tell my nodes were growing.

Not bad 5 minutes about CLL in the last 5 days, a minute a day. I like that ratio.