Dangerously tired but all is well with me and my ibrutinib

Just like you shouldn't text when driving or call your boss when drinking, I shouldn't blog on three hours sleep.

My trip home stated with a 3AM wake up to get to the Cloumbus airport around 4:20AM for my 5:50 AM flight to Chicago as the first leg of my trip home.

Yesterday I got good news. Went for a beautiful walk in Inniswood Garden to celebrate. Pictures to follow.

More good news.

Hgb is back up to a low normal 13.8. No downward trend.

My reticulocytes are just fine at 1.8 (some unproven but possible concerns that BTK inhibition might effect retics which are baby red cells and therefore eventually lead to anemia).

My WBC climbed from 9.8 to 12.1, which was mostly from my ALC going from 2.9 to 4.1. This are very small changes, but could represent more shifting of cancer cells from my nodes to the blood stream. One of the pleasant ironies of ibrutinib treatment is that, at lead in the early phases of treatment, no matter what your lymphocytes do, go, up down or stay stable, it is possible and logical to have a positive interpretation. Nice that is virtually impossible to get any bad news.

Eosinophils are high again following a weekly saw tooth pattern. Absolute count is 1.3 which would normally get my attention.  Seeing it is not trending up, I am not worrying.

Platelets are still super at well over 400,000, partially reflecting the reality that  a spleen less, so they enjoy a longer life span with much less filtering

Neuts are 5. That's nice.

No change in my nodes on exam, but seeing as most are gone or have shrunken in just three weeks of therapy to less than 1x 1 cm, it is hard to detect meaningful change.

I still some gut issues- heartburn, cramps, mild nausea. Nothing dramatic.

Next week, after flying across the country yet again, I get will two CT scans, more extensive lab work, my next 28 days' worth of inbrutinib and the associated diary, and  IV ofatumumab, all on the same day.

From there, the next day I fly to Orlando to lecture before I get to rest at home.

Also, as my follow-up visit is on day 30 and I only get 28 days of pills, I will have been of my magic pills for two full days, something I am not looking forward to.

More on this subject in another post. This may not be an insignificant issue.

Las Vegas, Valley of Fire, CLL lecture

Arch at Valley of Fire State Park 50 miles outside of Las Vegas

Been in Las Vegas to lecture for continuing medical education (CME). Staying at the Vdara which is a non smoking hotel with no casino.

That part is good. I can even find organic raw and vegan food.

But Vegas is crazy and crowded with falling down drunk people. The traffic is ludicrous. The prices are incredible. The lights and noise are overwhelming. Last night it took 45 minutes to drive two blocks because Kaskade was DJing at the hotel next door. Don't tell me your don't know who Kaskae is? The short tight black club dresses that everyone and I mean everyone is wearing make the 60s mini skirt looks like a nun's habit.

I so feel that I don't belong here. Am I getting old or what?

But there is a lovely view from the 51st floor of the fountains at the Bellagio and the drives to the amazing red rock parks nearby has made the trip. I love the desert. So calm and quiet and austere.

By the end of June I will have lectured to well over a 1000 primary care providers on CLL and its emerging therapies.

My lecture here was focused on what a primary care provider needs to know about CLL to best care for his patients. I also want the audience to know how the future of CLL in particular, cancer  in general, and medicine universally is moving away from blunt therapies such as chemo and towards targeted treatment such as ibrutinib.

I was pleasantly surprised by the strong level of interest in the topic by healthcare professionals whose roles may often be more supportive in treating these patients.

I am continuing to do well on my ibrutinib- mild gut issues, but shrinking nodes.

Tomorrow I will be in Ohio meeting with some dear CLL friends who will driving in from the east.

Soon I will blog more on how I see ibrutinib fitting in the world of CLL therapy and will post an update after my Tuesday clinic visit.

Good news on Ibrutinib

The day has slipped away and I am flying home ridiculously early tomorrow morning for a quick visit to the kids and the cat, before returning here for another two weekly checkups

So I will be brief, but  Ipromised an update.

The magic keeps happening.

My subjective feel that my nodes were shrinking was confirmed by the exam today. Really no nodes bigger than 1 x 1 cm. That is amazing after only two weeks of ibrutinib. Sore were 5 x3 a few weeks ago.

Lab showed a normal WBC and ALC so I did not get the big bump up that many see in other cohorts, but that might be because of the ofatumumub. It hangs around for a long time and may be preying on those hapless lymphocytes unprotected by the "microenvironment" when floating in my blood stream. No-one seems worried, so I won't either.A rise in ALC doesn't seem to predict response

Platelets remain above 400,000.  My ITP is in deep retreat.

The only fly in the ointment is that my Hgb has drifted down a bit to 12.9 which is the lowest it has been in years. BTK is found in reticulocytes, but my retic count was good. Ofatumumab can occasionally cause anemia. I will watch the trend. In blood tests and stocks, it's the trend that counts.

Gotta crash. More from SoCal soon.

Clinic tomorrow, home the day after

Longaberger's Home Office, Newark Ohio

LA Kings lost. No solar eclipse to admire in Columbus. Some heartburn. Muscle pains and my pimple.


I am am not worried.


Little new to report, but tomorrow is a clinic day with lab and exam. Two weeks of ibrutinib, the magic pill for CLL.


Will let you know the latest.


Flying home on Tuesday and then onto Las Vegas to lecture to about 200 family doctors on CLL.


Then back here, then home, then back to Columbus, then to Orlando to lecture. All this takes place over about a 10 day period. Only then do I get to fly home for almost a month, the beginning of many monthly visits to Columbus.


It's worth all the hassle and stress for the results I am getting.


Fell in love with Columbus, but ready to return home to the Pacific coast and dip my toes in the waters and see my boys and my cat.


As a sweet parting nostalgic treat, saw Peter Noone with Herman's Hermits on Saturday in Newark, OH at the beautifully restored Midland Theater. Great fun. The crowd was not young (more than a few walkers), but we all had so much fun.


Drove to the nearby world famous Longaberger's Home Office. They make baskets if you were wondering why the choice of building motif. It's one of the classic Americana roadside attractions for sure. More fun.


The classic old central courthouse and waterworks castle with its turrets and the downtown murals of bygone days of skating on the canal and more were wonderful to see. but the architectural highlight has a disabused 98 year old corner bank by the important American architect, Louis Sullivan. Some real gems in this small Ohio town. I am loving central Ohio.

First of ten Rules to live by with CLL

This is based on the presentation I did at the Niagara Falls CLLPAG Conference where I listed ten rules that worked for me in living with CLL.

These are my rules. They helped me, but may not work for you, and that's fine. Know what is right for you, your spirit, your faith, your energy, your chutzpah, your intellectual curiosity, your level of trust of the medical industry, your tolerance for stress, and your world view.

 Use only what feels helpful and disregard the rest.

I will start with one that anyone who knows me or has read my blog with recognize. Any teacher will tell you, it is good to constantly review the importance principles, so please pardon me if I repeat myself.

This is an oldie but a goodie.

UNDER REACT

Not just to the lows, but also to the highs. I am not suggesting we don't need to express our joy or our worries, that we shouldn't take appropriate action when needed.

I am only saying that we should pause and reflect and react calmly and dispassionately as possible to whatever CLL throws at us.

A cool unemotional look at what needs to be done, which may be nothing, helps you make the most out of a good or lousy hand in both poker and in cancer.

There will be future ups and down. We need to conserve our energy- physical, mental, and spiritual. Everything changes- not always for the better, but not always for the worse either. With change comes a chance to react and act in a new way.

I am not pleading for total equanimity, just that we moderate our responses.

It has helped me immeasurably to live on this wild CLL roller coaster, to live in the moment, and to prepare for the future.

I am continuing to do well in the trial with nothing to report other that a tender pimple on my forehead. Honest!

This should be my biggest problem with ibrutinib.

Avery different Brian Koffman, one that I hardly recognize quoted something like this nugget from Jon Kabat-Zinn.way back on July13, 2008 just a few weeks post transplant, when I was so vulnerable and tender and oh so hopeful.

Do not: COGITATE, AGITATE, AND REHASH

Instead: MEDITATE, ACT, AND BE AWARE

Life goes on.

Under react.

I have never been able to actually find that quote, but if he didn't say it, I bet he would approve it. Maybe I made it up, and like the Zohar, gave it creditability by attributing it to a great author.

Heartburn: Ibrutinib (PCI-32765)

Well I guess I am getting a taste of the full spectrum of GI issues associated with ibrutinib.

While the lower intestinal issues have calmed down, and the nausea is gone, I am having some nasty heartburn for the first time since I can't remember when. Vegans usually don't get heartburn.

I am confident that this well recognized side effect of the drug will also pass, as have the other issues.

It is hard to report on my palpable nodes day to day is kinda like watching the grass grow. You don't notice much difference from one morning to the next, but after a week there has been a real perceptible changes. My nodes are slowly melting away.

Generally I am feeling well otherwise. More details in future posts.

Canoed six miles down the Darby Creek just south of Columbus today. It was wonderful.

Has a great meal with new friends. Vegan flour-less chocolate cake may be the source of my gastric issues. That was wonderful.

Watched the LA Kings win game three against Phoenix. That too was wonderful.

Only the heartburn is not so wonderful.

Alemtuzumab in Combination With Methylprednisolone for 17p deleted patients

J Clin Oncol. 2012 May 10;30(14):1647-55. Epub 2012 Apr 9.

Alemtuzumab in Combination With Methylprednisolone Is a Highly Effective Induction Regimen for Patients With Chronic Lymphocytic Leukemia and Deletion of TP53: Final Results of the National Cancer Research Institute CLL206 Trial.

Pettitt AR, Jackson R, Carruthers S, Dodd J, Dodd S, Oates M, Johnson GG, Schuh A, Matutes E, Dearden CE, Catovsky D, Radford JA, Bloor A, Follows GA,Devereux S, Kruger A, Blundell J, Agrawal S, Allsup D, Proctor S, Heartin E, Oscier D, Hamblin TJ, Rawstron A, Hillmen P.

This article (link here) is notable for three things.

First, it offers a very impressive response rate in the most difficult to treat patients. 85% overall with 36% CR (complete remission).  7 of10 patients with lymph nodes > 5 cm responded and two had CRs. Wow!

Second, it has a very high risk of serious infections. I quote:

"Grade 3 to 4 infection occurred in 51% of the overall cohort and in 29% of patients less than 60 years of age. Treatment-related mortality was 5%"

Still it is an options for those with 17p del who have so few options and a trial with tyrosine kinase inhibitor is not in the cards. It makes most sense in younger patients, younger being less than 60. It could be a bridge to transplant as median progression free survival was about a year, time enough to get the transplant team rolling and get the Campath out of your system.

Overall, however, it is a risky path as both HDMP(Methylprednisolone) and alemtuzumab (Campath) are very immunosuppressive. It is not just the risk of catching some bug. It is the risk of waking up something you already caught and that has been dormant for years such as zoster or CMV. The steroids have other significant side effects too and surprising  two out of three patients had grade 3 or 4 hematologic toxicities.

I might opt for HDMP+O myself if I wasn't in this ibrutinib + O trial here at OSU, but the data on HDMP + A is very persuasive and would need to be carefully considered.

Third and final point, one of the authors is the late great and much beloved Terry Hamblin. While admittedly, some of this is old data presented in 2009, it is updated for this 2012 publication months after his passing. 

Truly Dr. Hamblin lives on in the work he has done and so much more.

What a blessing his life was for those of us who knew him.

On personal note, I am continuing to do well in Columbus with my three grey pills of ibrutinib every morning. Looking forward to a few weeks of no infusions. I have less gut issues, more muscle pains, and smaller nodes. Life is good.

If the weather is good tomorrow I am going canoeing in Darby Creek. Dinner with new friends. Tonight went for a sunset walk in Prairie Oaks, a beautiful Metro Park. The Kings (HOW BOUT THOSE KINGS?) are on TV here.

I really like Columbus.

I am also really glad I will be home to stay in a few weeks. 

I have Stanley Cup playoff tickets that are finally useful and I have to sell them all. It probably will all be over just a few days before I get home. Maybe I can still catch the victory parade.

GO KINGS GO

PS. I love this kind of post: Raw science, good news, dear friends, nature, and hockey in one sweep!

Very bad and irrelevant news: Ibrutinib (PCI-32765)

Soon after I first arrived here, I hinted at some bad news that I needed some time to digest.


As circumstances developed, I didn't see Dr. Byrd for several weeks to get the proper perspective and then I had to digest what he said.


The good thing about CLL is even with bad news, you almost always have time to analyze your circumstances, adjust to the new realities, under react, and move forward. 


I also wanted to wait to share with you until I had more distant from the shock


Let me set up the story.


Just before I came to see Dr. Bryd at OSU to assess whether I was a good candidate for his trial, I had a bone marrow biopsy with Dr. Kipps to show that I  had recovered my CD20+ after all my rituximab, an inclusion requirement for the clinical trial with ofatumumab and ibritinib and to assess my status.


That bone marrow biopsy done two months early showed slightly less than 10% CLL (with CD 20 positivity), and my old friend 11q deletion back in 11.5% of the the cells analyzed. The marrow was pretty healthy. No big surprises.


I tried to talk them out of another biopsy at OSU, but they insisted. 


It told a different story.


They use mitogens or stimulants that makes cells divide and thus make it easier for the pathologist to find genetic abnormalities.


And they sure did.


The FISH testing found over 50% of my cells as being 11q deleted.


For the first time 13q14.3 (D13S319) and l-3q34 (LAMP) were both positive.


And:


17p1-31 (TP53) which should be 0-6% of the background population was positive at 7.3%. Not a strong signal, but not a signal I wanted to see at all.


And worse yet, the cytogenetic studies showed that I had not one but two evil clones with "complex karyotypes" that confirmed the FISH findings and re-enforced my bad prognostics and suggested likely resistance to most therapy.


My cancer apparently consisted of two clonal populations, both nasty and both pretty bizarre. Bizarre is bad. Bizarre is aggressive and unresponsive. 


This was very dark news indeed. 17p deletion is usually a clarion call for a transplant. Nothing else reliably stops its often furious and fast fatal march. Complex cytogenetics may make any decision, transplant or other therapy more problematic. Clonal evolution is itself a very poor prognostic indicator. Zap 70 +,  unmutated, CD38+.  I had just about every bad omen.


Things were not looking good.


Now before I proceed, I must point out that comparing the sudden change to a much more aggressive and hard to treat cancer in the 60 days between Kipps' and Byrd's biopsies is not fair because the two labs were using very different techniques.


The mitogens employed by the team at OSU are used precisely because they powerfully stimulate cell division, and thus can demonstrate and some would say artificially inflate genetic abnormalities.


The two methods are looking at very different raw material. Comparing apples and rabbits. Static and active. Most research and data you see in the journals and at conferences still asses their findings the way Kipps' lab did with the static FISH studies. That is the existing standard when a paper says that 20% of the patients were risk risk 17p or 11q. 


So there may be much less change in the 60 days than the numbers suggest.


But the realist in me, says it is still some kind of devolution.


And Dr. Byrd said that these low level findings may not be accurate, as the 17p is the most difficult probe to nail against the background noise. It may mean nothing. It may be a false positive.


The skeptic in me says it must mean something.


Moreover, Dr. Byrd (and Dr. Keating agreed) reassuringly stated that he has seen these low levels of 17p disappear. 


The worrier in me wonders if they are really gone or just hiding? 


But what makes all this speculation and grim foreshadowing and ruminating moot and irrelevant is that I am responding to the ibrutinib.


The proof is in the pudding.


It's working. 


IT'S WORKING!


Some data generally suggests that, at least at first, low levels of 17p del are not as a important factor in response to most therapies as are high levels.


Most importantly, as I have posted before, there is little difference in the response to ibrutinib of 17p deleted patents compared to this with those with more favorable FISH. The depth or durability of the drug's activity seem blind to 17p deletion status. And there are theoretical reasons to believe that being the usual lousy ZAP70 + as I am might be actually be an advantage as PCI-32765 blocks B cell signaling and ZAP70 is all about signaling.


It is all irrelevant as long as the pills work their magic. So far, so good.


What it does tell me, is that it was one of my more prescient and fortuitous moves to push to get into this trial when I did. It's closed now.


If I had not, I would not  had a second biopsy and would not have known of my clonal evolution and the sinister loss of a 17p. 


When it came time (sooner rather than later)  that I needed treatment, my options would have been very limited as most therapies are inactive or pretty toxic or both when you don't have a working P53 pathway (usually found on my missing 17p) to tell the cells to die. Making matter worse, many trials with ibrutinib or other tyrosine kinase inhibitors would exclude me because of my prior transplant.


Of course, there still exists a few scary "what ifs" and "what nexts". Planning for them has become much more difficult and constricted. But that can wait.

Right now, the overwhelming sense I have moment to moment and week to week is just I how fortunate I am to have made the jump to Columbus, Ohio when I did.


I am very lucky and very blessed and very thankful to be here. Now.

More Good News at the end of the first week of Ibrutinib (PCI-32765)

The exam at clinic today at the James by Gretchen, my PA, and Dr. Byrd confirmed my lymph nodes were much smaller.

My white blood count and lymphocytes doubled but only from six to twelve and from two to four respectively, but everyone seemed happy with those numbers.

Dr. Bryd says the rise in the lymphocyte count is not a prerequisite indicator of the ibrutinib working. Not at all. I had expected a much higher jump up in the ALC (lymphocytes) with my nodes shrinking so much and the unanchored clonal B cells needing to go somewhere, but Byrd said that in those such as me with ofatumumab already aboard, may not get as big an inflection in the counts.

Hgb is stable but still a touch low, eosinophils are up a bit again, and neutrophils and platelets are all good.

My GI issues are manageable and should gradually improve. Apparently they are more common on those of us like me with big abdominal nodes. They usually decrease over a few weeks. Makes sense.

And Dr. Byrd says he reads my blog. I feel honored.

The news is very very good. Still tired and muscle pains, but happy. More soon.

I Gotta to Admit It's Getting Smaller

The nodes are continuing to shrink. Smaller today than just a few days ago.

No secrets in the showers. A palpation reality is that soapy hands makes the skin disappears and the nodes easier to find. They are still there, but on they are getting hard to find.

More GI issues with cramps and pain and nausea and diarrhea.

Clinic appointment tomorrow.

It's working already: Ibrutinib (PCI-32765)

My nodes are definitely smaller after only five days. Not nearly gone, not softer, but undeniably shrinking.

Also getting waves of nausea and feeling plain lousy and diarrhea so I know the medication is for real, but it is nothing that I can't manage.

Monday I am at the clinic and will see if the less biased examining fingers of my treatment team confirm my findings of diminishing nodes that I discovered when I showered this morning.

I also expect that those nasty B cells had to go somewhere, so my absolute lymphocyte count should be quite a bit higher when they do the blood work. That's a good thing.

Maybe, just maybe, this is the beginning of the end.

This is very promising news.

Now I must remember to enjoy but under react.

Interview at Niagara Falls

Interview with Andrew Schorr at Niagara Falls, April, 2012

My first 36 hours of life on Ibrutinib (PCI-32765)

I took the first 3 specially prepared by the pharmacy gray capsules of ibrutinib 140 mg each for a total of 420 mg yesterday at 11:15AM at the infusion center, except I had no infusion. That was a treat. To go to the cancer center and sit in an infusion chair, but get no IV.

I did have blood drawn, and except for another mild blip in the liver function tests and my mild anemia, all remains normal. I was examined and questioned repeatedly (do you have rashes, fevers, GI issues, fatigue, pain, neuropathies and so on?) and issued instructions and given a diary to complete and waited around for about 2 hours. The PA (I didn't see Dr. Byrd again) had said almost nothing negative about ibrutinib and proffered glowing reports of all the successful patients in the trial. Seems like almost everyone responds and almost no-one has any major problems.

Then I was out of there with the magic pills in my stomach and on their way to by blood stream and into my cancerous B cells to block their malignant communications and begin the process of healing.

The earth didn't shake, bells didn't ring, and angels weren't heard singing, but it was still pretty special. Had a wonderful meal and a long nap.

Took the next three pills this morning, and I have nothing to report. No missing in action lymph nodes, no sudden surge of health, but no diarrhea or rashes or bruises or any of the side effects I was told to possibly expect. Nothing positive or negative. If there was a placebo control, I would think I got it.

A non-event and I am just fine with that.

Many people get a very fast response with ibrutinib, so I hoping and expecting by the time of my appointment next week, my nodes will be at least less firm, if not significantly smaller. My white count will likely have climbed as all those clonal B cells leave the protection of the germinal centers and enter the dangerous freeway of blood where their life expectancy is much shorter.. That is what the PA seems to be anticipating. That would mean I am one of the many responding.

But for now, the game changing ibrutinib, like the actual infusion of my transplant, was a bit anti-climatic. Wonderful, satisfying, but not very dramatic.

The real positive excitement will happen soon enough.

What doesn't kill you makes you stronger: NOT

It has often been said what doesn't kill you makes you stronger.

THAT IS SO NOT TRUE!

When you are fighting for your life, be it cancer or heart disease or major surgery or any of a myriad of chronic grinding illness, the flare-ups and complications and relapses and the aggressive therapies needed to steady the ship usually leave you weaker, more tired, more stressed, more vulnerable and often more disabled and depressed.

Sure it was good to have survived measles as a kid (proud to part of the last generation who got the disease and not the shot), or learnt from a failure in college or a lost job or love in your 20s, but most stuff that hits those of us over forty years old, leaves us wounded and weakened. Our immunity or our bone marrow or our psyche all can take a hit, becoming less resilient.

It can wear us down, beat us up. We can rise again, but like the boxer who beats the count, we might be wobbly and need to be extra cautious to avoid a career ending injury.

I don't say this to depress or discourage, but rather to urge us to act wisely and to do what we can to avoid damaging choices. Make choice with our eyes wide open. Risks and adverse events are not always just part of the package insert for the drug or the over protective counsel from an elder or an expert . They are real life occurrence that happen with cold statistical certainty. 

We need to do what we can to improve our odds and avoid the slings and arrows or outrageous fortune. Stay out of the line of fire if we can.

Sometime it is not possible and as is the rightful order, the rampant disease is worse than the treatment. Still the treatment, while preferable and the wiser course to the morbid state it treats, can be pretty noxious. 

We do what we must do. I just don't buy the belief that we are all supposed to thankful somehow for the "experience" we have gained from all these punches to the gut.

This rant just came over me in a rush- a sudden insight that I wanted to share.

Tomorrow I start ibrutinib-PCI-32765- the raison d'être for my moving to Ohio over 8 weeks ago.

I can't wait. Partially because it is so effective and partially because it is so non-toxic. 

Such a perfectly lovely combination.

I am so lucky and grateful to be here.

GMOs (genetically modified food) How safe is your food?

While this video makes some unproven assumptions, it does point out how little we know and the real dangers of experimenting on ourselves.

GMOs are rightly banned in Europe. And they should be here.

Because GMO food is not labelled in the USA, the only way to reduce your intake of these engineered foods is to eat organic or grow your own from harder and harder to find organic seeds.

This is just a guess, but I think it our kids who are at the highest risk from exposure.

None of the dangers are proven, but remember how long it took to link tobacco exposure to cancer?

Let me know what you think.

GMOs (genetically modified food) How safe is your food?

Obama Rally

Went to the 2012 kickoff Obama rally down the street at OSU. Historic event some say.

Although it was a more than a 1/3 empty (they moved people down to the empty floor seats so it would look good for TV), for security reasons they locked the doors hours before the president spoke (I didn't get the memo), so all I got was a close look at the very cool but empty presidential limo and to hear the speech from muffled loudspeakers outside with a surprising small handful of others.

It seemed, at least from my perspective of the frustration of being outside listening in, a bit sad and dull and officious and of course like all well planned political events anywhere in the world from the left or the right, completely prefabricated and contrived with no surprises or spontaneity. Like at a losing Columbus Blue Jackets game, the crowd started leaving early to beat the traffic.

I was disappointed by the lack of content and spectacle and emotion.

What actually made the biggest impression was the overwhelming well oiled security team.

I am sure my review would have been different if I had been in the arena and I own that. Next time, perhaps.

Like Kennedy, this president does best when he came seen and not just heard.

Left in time to hear, for me, a much more helpful and pertinent lesson taught by a local rabbi on the wisdom of the sages from two millennia ago: He quoted: "A person's character can be judged by the way he handles three things, his drink, his money, and his anger. And some say: by the way he jokes." J Talmud.

Guess I am in big trouble.

Walking in Hocking Hills, Ohio

Rock House

Wading in the water at Lower Falls near Old Man's Cave

The Gorge near Old Man's Cave

Conkle's Hollow

An amazing walk through enchanted forests inHocking Hills in southeastern Ohio. The more I walk the less I hurt and the less I fret, so I walked miles today. More pictures than words today is the result.

Virtual Cancer Buddy and brief update on Clinical Trial NCT01217749 (PCI-32765 and ofatumumab)

Well I am  finished my final weekly infusions of ofatumumab and so I now can put some energy into some projects dear to my heart.

This http://www.virtualcancerbuddy.com/ is near the top of the list.

Please go to the link and spend the two or three minutes letting me know what are the most important health data and web support tools that you would want to have with you at all times.

As some of you know, I like Chris D, and many others with CLL or cancer have a thumb drive in my pocket that has some medical history, but it would take a dedicated doctor or nurse to find it and open it and root through it if I wasn't able to guide them. And if I am able to guide them, they don't need it.

The idea is that this would be more accessible, simpler and more robust, but because it could contain more that just the dry spreadsheets and contact information it would be something that you would be constantly consulting and would be regularly updated.

It would be your boon companion, virtual cancer buddy.

Your feedback will help to design it.

Do you want easy access to the latest clinical trials?

Do you ache for a calming MP3 to help manage the stress?

Do you long for tools to aid on the difficult decision processes?

Do you wish you had easy access to reliable research information?

Would an integrated appointment reminder be important?

Do you want your advance directives accessible?

Would it help if it could Skype to others with cancer?

Where do want it? On your phone or ipad or computer or everywhere?

Please check out http://www.virtualcancerbuddy.com/ and see the whole list.

The plan would be to provide this as a free service to cancer patients and their caregivers as a value added service from their treating hospital or oncologist.

Thanks a bunch for your help.  The survey only takes a few minutes at the very most.



Next week I finally start PCI-32765 or ibrutinib. These last 8 weeks of ofatumumab have been a long prelude with only very modest results on my nasty but not enormous nodes. Truth be told, probably all the benefit came in the first two weeks. Not so the advisers events. The persistent and humbling myalgias that have me limping around the apartment at times are my only side effect now. That and a completely mucked up circadian rhythm that has me up to 3 or 4 AM most days.

I am glad for a the five week break from "ofa".

I am ecstatic that I get to taste the magic sauce next week.

I am looking forward to being home again with my family and friends and cat and showing off my shrunken lymph nodes from ibrutinib.