CLL Support Association
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34 months on a Phase I-b Clinical Trial for Ibrutinib. A day of monitoring at OSU medical center with CLL specialist Dr. John Byrd

The weather in Columbus OH was wet and cool as I made my walk to the James Cancer Center along the newly restored Olentangy River. The Union cemetery sported flowering Eastern Red Buds as I thought about my impending BMB (Bone Marrow Biopsy). Had Ibrutinib finally put the CLL Bear into deep hibernation? I had been feeling good except for a winter bronchial viral infection that left me still hacking up phlegm in the mornings but had not slowed me down much. Nearing the Buckeye Stadium the extensive restorative efforts to make the Olentangy not only beautiful but a diverse habitat for wildlife became most evident. Small plantings were coming to life in the slowness of one cold winter's leaving that seemed to have found a tenacious refuge in North America from the fourth hottest year of global climate record keeping. An imperious lone goose, standing at the edge of the path, not moving as my hand passed within inches of its beak, its head slowly turning while watching me like a hawk!?? Did it detect a telepathic insult to its goose-ness? no doubt.

I had psyched myself up for my 2nd only BMB by wearing my "Bad to Bone" T-shirt from the memorable Canadian CLL Conference of 2007 where I had heard Drs. Byrd and Guru mentor Terry Hamblin lecture. 12 weeks ago my platelets had jumped up from a plateau of in the 80s to over 100 and all counts were looking to be in the numerically normal range. Blood is drawn and I settle in for the routine of questions: Any falls? No. Any nausea? No. Any pain? Hmmm ... Not yet(-; Any fatigue? No. Any changes in medications? Yeah, I stopped my Flomax so now I am only on the anti-viral Valacyclovir and 280mg of Ibru - that's it. My vitals reassure everyone I am still alive and I get to review yet another Consent Order. Sign here, initial there. I am out in the waiting room for evaluation and get a chance to chat up patients.

Jackpot this time as variety is the spice of life. CLL surely holds to the value of variety. I meet a woman who began Ibru two months before me who is crossing the 3year line and doing well. We talk about side effects and she reveals she had a Rituximab reaction that was life threatening as a prior TX to Ibru. A man overhears us relating war stories about surviving Rituxan and is incredulous. He has been on R for months and is doing great not realizing that anyone could have a bad reaction to R. Another gal I talk with is an Ibru Lab-rat too and is doing great. A guy passes by interested in our conversation and he is on Idelalisib and is doing well. Another lady with a bizarre presentation of low ALC and platelets in the 30s is on W&W and another fellow diagnosed at 34 is just getting his first dose of Revlimid. I have encouraged him to seek out the online forums and be a part of our community. I think of my BMB anxiety and what his anxieties must be like. I am called into the exam room.

Word comes down on high - No BMB. Seems my platelets, sensing my BMB apprehension retreated back to 90 from 103 which would nullify any CR result thus saving me for another 12 weeks at least. ALC although at the high normal ref range of 4.8 (up a tad from 12 weeks ago) indicates a tenacious presence of CLL cells. RBC, HGB, HCT all looking quite respectable. This seems to be a continuation of my pattern. One step progress half step back, wait... wait... then a little progress etc. Subjectively I am well and do not feel like I have cancer. By the numbers I have a way to go but it is a good ride. Now, if I can only find a way to bribe my platelets to hang in just under 100...

Before I knew about not getting a BMB I was trying to reason my way out of my next visit's CT scan to no avail. When I brought up the Farren et al. paper co-authored by Dr. T. Kipps showing that a combination of ROR1 & CD160 could be effective in determining and monitoring MRD status plus it is cost effective and couldn't we replace at least some CT scans by this test? Dr. Byrd said that although few people have relapsed on Ibru, they are caught earliest by CT scans. Hey - I tried. Here is the paper as I think we all ought to be asking our respective Oncologists for some replacement for at least some of the scans we are getting. <>

WWW - 70years DX in 2006 - 13q- monoallelic, CD38-, IGHV mutated 6+% failed FR in 2009 with kidney damage, failed RTX-HD in 2011 heart and kidney damage, Ibru in 2011--

5 Replies

How our lives are intertwined... wonderful post Wayne.

Elizabeth T. asked me what we should call the first CLL conference in 2006 and I said 'Bad to the Bone' ? in a rather flippant way, as I had just started a Facebook group with the same name... she said great!

Spent a few minutes on my Mac to design the Bad to the Bone logo with a image that Terry Hamblin sent me of a white blood cell... and a few weeks later those T-shirt were a reality. There is a stash of them left... all 3X...

Guess I was bigger back then ... I'm not half the man I used to be... LOL ;-)


Great memories Chris, from my first of three attended Canadian CLL Conferences where I met you and got an appreciation for our Canadian neighbors to put together one awesome CLL specific Community Conference. Your work along with Deb and Elizabeth and so many others still has positive ripples for so many CLLers. Thanks for all you do!



Hi Wayne,

Nice post :) I am coming up to my 3rd BMB in the next cycle, which starts next Thursday, when I have my 3rd CT scan. I am thinking about asking if I can have MRI scans instead or, at least as you suggest, replace some of them.

Over the period of the study (until February 2016) I am scheduled to have 9 CT scans, (i.e. 6 more).

I'm already seeing the possible emergence of skin cancer, which has to be confirmed. I had a suspected Basal Cell Carcinoma removed from my face last month. It will be 2 -3 months before it is confirmed either way, I am told.


Hi Mikey47,

Stay tuned as I am about to release the first in a string of posts on CT scanning. I plan to parse them out so not to overwhelm. Since you say you are in a study I can assume you must get the scans as I do for my study or be kicked out. If you are at a multi-facility medical campus you may have negotiating power to lobby your study co-ordinator to schedule you at the newest CT-scanner rather than the one that is availably convenient to the scheduler.

Here is an information preview for one post - CT scanners can vary greatly in what they expose you to in the way of ionizing radiation. You will probably be getting three scans for every session. You will know if you are on an older machine if it is a single source as opposed to a dual source scanner. For each of the scans you will be repositioned and asked to hold your breath. Each CT scan can deliver up to 450 chest X-Rays on the high end for the oldest scanners to 30 chest X-Rays per scan on the newest machines. Do the Math. Ask questions. I demand scans be done on the best machines at OSU where I had been scanned on 4 separate machines only one of which was a dual source (referring to radiation) machine.

Let us know how you make out and may your path be well chosen!



Thanks Wayne, will let you know after next Thursday.


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