CLL Support Association
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Ibrutinib monotherapy Clinical Trial latest monitoring - month 40

Hi All,

Recently returned from OSU and from my 12week monitoring. The weather was great though a little sad to see my old hotel, the Univ. Plaza, all fenced off and closed down. No more views of the Olentangy River. Must say however, the Fairview where I now hang my hat is refreshingly clean and has a great breakfast for anyone headed to OSU. My walk to the James Cancer Center took me by the Lane Ave. bridge Cancer Survivors Plaza. My favorite sculpture is not the figures but the huge polished granite sphere rotating on a rough stone bed in a moving pool of water under the rotunda. It is soothingly meditative.

Always I wonder if my chronically low platelets will regain in number above 100 that will then require a BMB (bone marrow biopsy). My low platelets are the only thing that may be keeping me from a CR at this point. Last visit in July my ALC was a point above high reference range at 4.9 and not in the normal zone (1.0 - 4.8) from the previous monitoring in April when it was 4.8. The uptick technically put me in "relapse" but was so small that it was not significant and reflected a familiar pattern on my Ibrutinib journey where the drug has "struggled" at times to continue the reduction of CLL cells, resulting in plateaus but eventually leading to yet another reduction. It is also a reminder to not take individual test numbers too seriously. This time I am in more secure area of normal ALC achieving a solid 4. Yay...! Calls for an extra round of Sashimi and sake at a newly found Japanese and Korean restaurant on High St. Platelets remain a spoiler skulking in the high 80s as the last time. OK, RBCs (red blood cells) were a tad under low ref. range (4.3 - 5.7) at 4.17 for a little additional insurance that I will not be ordered to get a BMB;-) Feeling great and walked miles over the Columbus city landscape investigating a coffee house after trying unsuccessfully to get into the Wexner art museum which is closed on Mondays.

I had the great pleasure to run into Wally Yocum and his wife in the waiting area of the James. Wally has fought many skirmishes to put the CLL Bear into hibernation that included a Flavopiridol Trial & now on Imbruvica/Ibrutinib. You can wave hello to a life size picture of Wally, in gear, in the James Cancer Center lobby as he was photographed participating in the Pelotonia to raise money for cancer research at OSU. He was looking fit and well like hopefully more of us will be as the new medications from research rolls out.

I met two interesting patients because of their unique therapy protocols which might not be familiar to many. One patient whose CLL expressed a "complex karyotype" was on Ibru/Imbru & Revlimid/Lenalidomide. Another patient was on a Trial Protocol with Obinutuzumab & TRU-16. This patient was doing quite well and was very pleased so far. I urged this patient to think about joining one or more of the several CLL forums to share and learn.

For those unfamiliar with TRU-016, it is a humanized anti CD37 SMIP (Small Modular Immuno-Pharmaceutical) protein that I first heard about in a lecture given by Dr. John Byrd at the 2007 Canadian CLL Conference. In 2008 when first consulting John about my CLL progression, he told me that in a small Trial of I believe 12 patients, two achieved a CR. Just as we hear about people who dramatically fail a drug therapy there is the opposite end of the patient spectrum for those called exceptional responders. With the coming of NGS (Next Generation Sequencing) more will be discovered to match those in need of treatment with a drug or drug combo that will attain better efficacy with less side effects. I wondered if this patient had been genetically screened as part of the selection for this protocol? Many questions and not enough time to pursue them.


3 Replies

Good to hear of all these new drug combos available to keep the 'CLL bear' in it's cave.

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Hi www

Thanks for sharing your journey, good to hear you are feeling great.


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Bully, bully, WWW!!

I am a 70 yo, 3 years in remission after 11/11 dx and immediate 6 monthly FCR's. 11q, but no addition studies, as I am not in a trial. But the advent of novel nonchemo tx is heartening. When the dragon awakes, I have indications for that. But I hope to get a shot at one of those combo or sequential trials to help out. But as for you, friend...

Thanks for blazing the trail for others

Regards and kudos,


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