Traveling: The Good and the Bad

Less than a week ago I was on the western or Atlantic coast of Ireland with a plane to catch across drive-on-the-left-side whole of the snow covered island in Dublin on the Irish Sea. 

Tomorrow I am off for a medical educational conference in San Francisco. I had hoped to stay with my daughter and son-in-law and granddaughter in Oakland, but the toddler developed a fever and cough last night, so I am taking the BART from the Oakland airport to a Marriott near the Moscone convention center.

I leave the conference early on Friday, flying home to change clothes and freshen up so that I can drive to San Diego to give a lecture for UCSD the next day on heart failure and sleep disordered breathing to a group of cardiologists.

Back home late on Superbowl Sunday (whose playing?), before I leave balmy Newport Beach on the Monday for the sub-freezing temperatures of Columbus Ohio where on the next day, I will have both a bone marrow biopsy and an interview by OSU on why I believe in enrolling in clinical trials at the "James".  Not sure of the timing is so smart on that.

After flying home, a week later I fly across country again, this time to NYC for the 17th Annual International Congress on Hematologic Malignancies – Focus on Leukemias, Lymphomas, and Myeloma where I am trying to train myself to be more fluent in helping others with blood cancers other than CLL.

On my way home from Manhattan, I must stop for a few days in Springfield, Missouri for more medical education related business. On this multi-legged trip, I will be gone a total of 8 days.

One week later finds me in the nation's capital for a few nights speaking for the National Sleep Foundation on the "sleepy patient" at their big annual Sleep Health and Safety meeting.

Then finally by the end of the first week of March, I will be home to stay for almost a full month before I hit the road again.

In between all this scurrying about, I am being infused with IVIG, consulting my numerous doctors, being consulted by my patients, preparing all these lectures I must give and generally just living my life.

The frequency and depth of my blog posts can suffer, especially when I have extensive patient care and writing responsibilities.

But it is a privilege to get to see this much of the country, to have these chances to teach and learn and to meet and greet new and old friends. And I am so lucky to be well enough to travel. That wasn't always the case, so I don't take these trips for granted. Today I am at the cancer center for my IVIG and my CBC is near normal with a Hgb of 13.9, an ALC of 1.1 and a platelets count of 398. That's good to go.

And some travel is just pure pleasure. So while I still have a glow from our wonderful 8 day trip to Ireland, let me post some pictures in no particular to share a sense of the magic. What you won't get in the photos and the short video is the bone chilling cold of the winter rain and snow and the more than the compensatory heart felt warmth of the kind and proud Irish people we met.

Falconary with Harris Hawks at Ashford Castle 

Kylemore Abbey in Connemara

Back of Ashford Castle and Hotel where we stayed

Interior of the medieval Bunratty Castle

Village road in Bunratty

Cliffs of Moher in the bitter cold

Neolithic Poulnabrone Dolmen in the strange burren

Dromoland Castle, another one of our amazing hotels

View of Dromoland Castle from golf course (played year round)

Dirty Nelly's in Bunratty where my wife sat in on the "trad" music. She ate Galway Bay fresh oysters and I enjoyed a Guinness

Kilronan Castle and Hotel where we also stayed in the north

Neolithic carvings at Newgrange over 5200 years old (much older than Stonehenge and the Pyramids of Giza- Imagine standing inside a building built more that five millennia ago )

ASH 2012: Dr. John Byrd thanks the patients

In this very brief wrap-up of my four part interview with Dr. John Byrd, when I offer him a chance to comment on anything that he wants to emphasize from all the amazing news out of ASH 2012, the good doctor chooses to thank the patients for taking the risks and jumping into the clinical trials. What a mensch.

I have been loudly critical of published clinical papers for failing to thank patients in their acknowledgments, but this may be changing. The patient participants who make it all possible are being increasingly recognized by the investigators.

My recent post on clinical trials dealt with ways to weigh the personal risks and benefits of enrolling in a trial.  We CLL patients have never had a better risk-to-benefit ratio nor has there ever been a greater need for us to enroll in a trial than we have now. Today, the choice to make the jump, while never easy, is easier. While one might argue that it took some prescience, some enlightened self-interest and even some fortitude for me to enter my trial at OSU, I would never argue that it took much courage. On the other end of the spectrum is the raw bravery and ultraism of those who joined the phase 1 trials when so little was known.

Let's hear what Dr. Byrd has to say:



Next  I will be posting an interview with Dr. Jeff Sharman.

Where I will be tonight: Will Koffman's 7th Annual Avanti Show: BLEACH GARDEN

This is where I will be tonight at 6 PM- 9 PM: Avanti Cafe in Costa Mesa at the BLEACH GARDEN Art opening. Hope some of my friends can join us.

Will is giving away signed and numbered limited edition prints of of the line drawing at the bottom of the page to the first 50 who arrive, but the main reason to come will be the fun people with at least 3 generations of art lover and bon vivants, the wonderful creative vegetarian food, and the amazing art. This has been happening annually for 7 years and is always a good time.

Here is the EVITE:

• Hi Everyone, hope you can join me for my show this year at Avanti Cafe! The opening will be on Saturday, January 26 from 6 to 9 pm. Here's all the official info: Open to the public Join us for a Costa Mesa tradition, the 7th annual art opening event with Will Koffman. This exhibition will present a selection of new fine art works rendered with bleach as well as a gallery of small plein air oils. All works will be available for sale.

Avanti Cafe

259 E. 17th St, Costa Mesa, California 92627

View Map · Get Directions

Poster for the Opening

One of the Bleach Art

LACEMOTH

Signed and numbered limited edition print that Will is giving away

See ya!

ASH 2012: Dr. John Byrd Part 3 Accrual Issues in Clinical Trials, Transplant, CAR-T, the Rare Relapses, and Biological Combination

We are still in Ireland having an amazing time so I will be brief in posting the third of a four part ASH 2012 interview with Dr. Byrd.

In this segment we are  getting into some of the gritty details of treatment with ibrutinib. For the cognoscenti, this may add to your knowledge base. For those new to the ibrutinib story, I suggest you review my early ASH 2012 interviews with Dr. Pagel and the first two parts to this interview in my earlier posts.

To my non-CLL friends, I guarantee that soon I will share some amazing craic, photos, and video from Ireland. but right now, I am just having way too good a time to devote much attention to the internet.

ASH 2012: Dr. John Byrd Discusses Possible Complications of the New Therapies and the New Trials

We pick up the interview at ASH 2012 with a perspective on the possible complications of the new therapies (ibrutinib and GS-1101 or Idelalisib), starting with infections in general in CLL and in the trials, bleeding problems, liver enzymes, and atypical pneumonia.

He reminds us that we are treating CLL, not a trivial disorder. I believe he is asking us patients to take a step back and consider our tolerance of adverse events against the often higher risks of the alternative therapies or the real dangers of doing nothing.

In the last half of the interview, Dr. Byrd discusses the RESONATE trial and a possible path to early access to ibrutinib, another trial of GS-1101 versus rituximab with a cross-over, a single arm relapsed 17p del trial of ibrutinib, and others with bendamustine.

Several of these trials offer real solid therapy with no chemo arm. That's special.



This post comes from a castle in the the cold and wet and wonderful Ballyfarnon in northern part of Ireland.

Below is a picture of my my bonnie lassie at the entrance to Kilronan Castle.

We are happy a splendid time, meeting brilliant people. You don't need to believe in the wee folk to recognize that Ireland is a magical place.

ASH 2012: Dr. John Byrd and the Dream of Magic Bullets: The History and Science behind the Success of the BCR blockers such as Ibrubinib (PCI-32765) and Idelalisib (GS-1101 or CAL101)

In the first of a four segments of my interview with my own wonderful doctor at OSU, Dr. John Byrd, we hear him discuss every patient's dream of a magic bullet and how the history and science of TKIs in general and BCR blockers in particular lead us tantalizingly close to that magic moment.

Be prepared to hear a progression free survival rate in the trial that Dr. Byrd presented at the ASH press conference that will knock your socks off.

Be prepared for some surprisingly good news on what happens to the adverse events the longer you are on the medication.

If you have visited my site at all in the last few months, you are already prepared for the news of the changing of the guard from old school cytotoxic, collaterally damaging, mutagenic chemotherapy to the emerging gentler targeted biological approaches.

 Dr John Byrd ASH 2012

My wife and I leave for Ireland next week, but I hope to continue to post more of the interview every few days. Even ancient castles have the internet these days, but expect shorter commentaries.

The house, the vegetable garden, the tea trees, and most importantly, the cat will be cared for by my adult children who will be moving in during our absence.

Packing the clothes is the easiest part of getting ready. Many layers, and be prepared for the cold and wet.

I have burned about 4 hours of traditional Irish music to keep as going as we drive from village to village in our little rental car.

Paperwork and boarding passes may be an issue as United Airlines and Aer Lingus don't seem to like to play well together. I am hoping our status with Global Entry and TSA-Prescreen will help, but I am not counting on it. The connection in Chicago is tight.

The real work is getting all my precious meds organized for my daily needs. That takes hours of counting out pills. The idea of schlepping more than 20 bottles of my daily and my just in case medication is overwhelming. Without my meds, I would be in trouble fast, so I always bring extras for a few days' buffer. And I bring emergency meds for sudden infections, especially with the flu making the rounds in the USA and Ireland. My irreplaceable Ibrutinib travels in my pants pocket so it is always with me.

The prep for a trip and the worry over what could go wrong is always the worst part. Once we are in Ireland, no matter how cold and damp, we will love it.

What makes that especially certain is that an internet friend whose wife has CLL is meeting us at the airport for a guided tour of the capital of his country, Dublin and then we will share a vegan dinner together. For a fanciful end to our very long day of travel and time shifts and touring, my wife and I will sleep in a real castle.

We can't wait to hit the road.

I am very lucky, but I got a ton of work to do before we leave for the airport.

One piece of personal medical news. Despite all the bone wasting corticosteroids prescribed with my infusions and other issues, and my stopping calcium, my bone density was unchanged in the last two years. I am still in the no man's land of osteopenia (not quite normal but not an an increased risk of fractures), but have not progressed to osteoporosis. I am crediting my high doses of Vitamin D3 and my weight training.

ASH 2012: Dr. Pagel discusses transplants for CLL and the Role of Radioimmunotherapy

In the final short segment of my ASH 2012 interview with Dr. John Pagel, he discusses the approach to hematopoietic stem cell transplants (HSCT) or what were once only bone marrow marrow transplants in CLL. Now, we more often harvest the primitive blood stem cells from the peripheral blood after they have been mobilized. Much easier for the donor who doesn't need multiple bone marrow aspirations.

What Dr. Pagel talks about the real possibility of cure for some patients, especially those who go in to transplant with their disease in a deep remission.

The news is that using a drug such as Zevalin (ibritumomab tiuxetan), a radioimmunotherapy (a radiolabeled monoclonal antibody) or RIT in high doses is getting the necessary deep remissions and improving the odds of that cure. Ibritumomab is similar to rituximab in that it latches onto and destroys any and all CD 20+ B cells (cancerous or not), but it differs in that it carries a radioactive payload to those cells and thus destroys not just the cell, but its nearby homeys. This is especially helpful in shrinking bulky cancerous nodes, but can be dangerous if there are too many B cells left in the marrow as the local radiation delivered can cause lingering damage to the future home of the new donor stem cells. Still, it is a lower dose, more "surgical" way in many settings to get the radiation precisely  to the desired sites (at the cellular level) than is an external ionizing radiation source, no matter how focused. And most CLL, at least to start out, is exquisitely sensitive to radiation, although it always come back, and often comes back meaner. 

There are significant expense and turf issues in the medical world that explain why RIT is a very much underused therapy. Briefly, it is very costly per treatment, but is usually used only once or sometimes twice, so the total cost is comparable to a full course of say FCR. More tricky is the role of the doctors administrating it. It can mean transfer of care from the medical to the radiation oncologist and many doctors are loathe to give up control of their patients. We can argue that it needs the services of both a medical and radiation oncologist and their support teams of pharmacists, nurses, and technicians. More turf issues.

But I digress. RIT is a great choice if we need a transplant and we can get buy in from our doctors and insurance.

And the other news is that the mortality curve seems to plateau around 3, not 5 years. After 3 years, we stop relapsing. The CLL doesn't come back.

In other words, if we can make it three years out with no evidence of the cancer returning, we can be pretty confident that we are, dare I say it, cured.

Transplants are risky business, but are a sensible option for those who are young with aggressive disease, who may not have the time or the option to wait for one of the new magic pills. And they can absolutely be curative.

You can't say that about any other CLL therapy. At least not yet.

Here is Dr. Pagel. Enjoy.

Quick Turn Around: 12 hours at OSU and leaving hungry, tired, but with good news and my Ibrutinib .

I just realized that I traveled across the country through 3 time zones with stops at 2 different airports coming and going to spend exactly 12 hours from midnight to noon in Columbus. Ohio. In that short time I rented a car, slept (way too little), scraped snow off my windshield and drove on icy roads (memories of Montreal but not part of my California life), then at OSU had a large bore IV started (ouch) for my 2 CT scans with contrast and blood work, got some of the results (my blood counts and chemistries are all unexciting and in the normal ranges, and my innards are looking more like those of someone without CLL, but I am not quite there yet because although my lymph nodes continue to shrink overall, a few are still enlarged in my gut), had a brief check-up (no palpable nodes), visited a friend at OSU with complications of his CLL, picked up my magic PCI-32765, swallowed the first 3 battleship grey pills for this cycle, and rebooked my flight to get home earlier. What I didn't do was eat anything (no time after the hospital and I was prohibited before by the CT and drug protocols) or get any rest.

That is what home is for.

Overall a good trip with good news.

Back in 4 weeks for a bone marrow biopsy, but I am thinking of staying 2 night this time so I can rest and visit with my Columbus friends.

That visit will be the one year anniversary of my joining the trial and will mark my ninth months of getting up a 1/2 hour early everyday to take my ibrutinib on an empty stomach.

Time is a jet plane. Literally.

More crucially, that clinic visit will be the cue for my entry into the rollover continuation trial where I will be seen only seen every 12 weeks, but still get CT scans every 84 days, at least for the first 2 cycles.

I understand that every patient who has reached that landmark visit which essentially ends his or her participation in Clinical Trial NCT01217749 and with it, access to ibrutinib, has been offered the chance to stay on drug and has chosen to continue in the new trial.

That seems like one of the easiest choice that I will ever make.

What a difference a year makes.

ASH 2012: Dr. John M. Pagel Part 2: Present Trials and Speculations on the Near Future of Ibutinib, GS-1101, ABT-199, GA-101, TRU-016 including Combinations and the Changing Role of Transplants

I am grateful for the thoughtful, caring and careful way Dr. John Pagel tells the evolving story of CLL treatment. But I am also grateful that he is willing to speculate about what the future might hold for us CLL patients and those yet to be diagnosed.

In the follow-up to Part 1 of my interview, Dr. Pagel hypothesizes a possible future of the "game changing" emerging therapies in CLL, their paths to probable approval, logical combinations, available and coming trials, the "boots on the ground" reality of how they will be used on and off label, and the reassessing of the time and place for allogeneic transplants.

His candid observation that drugs such as ibrutinib (PCI-32765) and GS-1101(now idelalisib and formerly CAL-101) will potentially be used extensively "off label" and upfront in therapy is in my opinion, a realistic take on what is coming to the next generation of CLL patients.

When he talks about the shifting role of allogeneic transplants, we hear his wisdom and experience gained from his years of helping patients in both the pre and post imatinib (Gleevec) eras.

He informs of us the logical combinations of agents, many with no cytotoxic chemotherapy to be found anywhere in the treatment protocol, that are available right now in clinical trials and will continue to be explored.

Please be sure to view Part 1 if you haven't already. It will help with the context of this continuation of the same interview. In Part 1, there is more indepth discussion of ABT-199. In Part 2, presented below, I start by asking him about the other two big names out there ibrutinib (PCI-32765) and idelalisib (GS-1101), and he picks up from there. 

There will be a brief Part 3 soon that will deal with transplants exclusively.

My Latest Lab- All Good

I still am a patient. I still get IVs. The nurses still blow the occasional vein. I still get enough blood drawn to decorate the set of a slasher movie. I still sit in the infusion chairs for hours every 4-5 weeks to get my IVIG. I still fly to Ohio every 3-4 weeks to pick up my ibrutinib, and when I get there I still get poked and prodded. I still get CT scans every 90 days, and bone marrow biopsies at least one a year.

I still need to protect my veins and my kidneys and liver from all the various medical ministrations that I receive so often.

I still worry about what the tests will show, despite my best efforts to do the Zen thing and detach. It's because I have just seen too many CLL friends on cruise control, get kicked in the teeth by a surprise finding. MDS, Richter's, a secondary cancer, a heart tissue, a sudden massive drop in hemoglobin or their platelets or neutrophils, or huge bump up in their lymphocyte count.

Today I talked to a long time friend who was in remission for six healthy happy years after minimal therapy (very little chemo which was quickly stopped due to side effects, mostly rituximab), and after a wonderful and vigorous vacation that including surfing and scuba on the other side of the world, came back feeling just fine, only to pass out at home, wake up to big bruises, single digit platelets, missing in action neutrophils, and a hemoglobin in the sevens.

CLL can do that. The Grateful Dead in the lyrics of Uncle John's Band nailed it: "'cause when life looks like Easy Street, there's danger at your door."

Maybe the story will be different with ibrutinib, GS1101, and ABT-199. Their mechanism of action is so different from traditional cytotoxic chemo-immunotherapy, there is good reason to believe that they will alter the national history of the disease and how it might relapse. Maybe in the future, we won't get blindsided by an out of nowhere cancer coming back to get us, like some psychopath seeking revenge.

But that is a tale yet to be told.

I would prefer to just be an objective reporter, bringing from ASH and beyond, the news, good and bad on CLL and its cousins and complications, but I have skin in the game.

That is the tap root of this blog. For me, CLL is personal. I am involved and passionate about CLL because I have CLL.

Right now, the general news from ASH is good, but the personal news from my infusion chair is even better.

WBC            8.6
Hgb             14.0
Platelets      390
ANC            5.8
ALC             1.2

That's pretty darn normal. Hasn't looked this good in years.

And I pretty darn happy.

A good way to start to the new year.

ASH 2012: Dr. John M. Pagel Part 1 Game changing medications including ABT-199, Ibrutinib, and GS-1101 for CLL

Here's a little New Year's Eve gift.

In the first of three segments of my interview with Dr. John Pagel,  he says some amazing things.

"this year from last year in CLL, it's game changing, it's night and day difference from where we're going and where we've come and what this field is evolving to, ...... evolving away from cytotoxic chemotherapy"

"this is an amazing wonderful time"

But enough of me quoting the scientist.

I will let the good doctor introduce himself and share some details about his personal experience and excitement concerning ABT199, ibrubinib, and GS1101.



As I attended more of the ASH science and education sessions, and as I interviewed more of the CLL champions, a more mature full screen story develops about the changes that are coming to the world of treatment.

Even a vegan can say that this isn't a case of too much sizzle, not enough steak. These changes are mighty and meaty.

This is really happening and it's happening fast.

In an upcoming post, I will outline some possible tactics for those of us whose urgent present need for treatment doesn't allow the luxury of waiting for the day in the not too distant future when we can go to our local pharmacy and pick up our bottle of pills to control our cancer along with our toothpaste and shampoo.

But first more, we have much more to learn from Dr. Pagel.