I saw Dr. Coutre at Stanford Clinic yesterday, and was dismayed to find out my lymphocyte count has gone up to 20,000. This is the highest it's been since I started on CAL-101, and may very well be a sign that I am failing the drug. I think everyone knew this isn't a cure, but I also think that we all hoped I would get a number of years of remission from the drug. A year and a half doesn't seem that long, in retrospect.
We will follow up with a WBC next month as part of my IVIg. If there is continued increase in the lymphocyte count, then it is likely I will be pulled from the trial. That would be a big disappointment, of course, since there is not much out there I would qualify for. The Bruton's tyrosine kinase inhibitor unfortunately is completely filled, so there would be no room for me. The other option would be conventional chemotherapy which does not work anymore on me.
So I may be going from a stable situation in which I feel well and am able to live a pretty much normal life to one where CLL is once again front and center. I know I have done better than many (but not all) and I shouldn't complain, but this indeed is a real blow.
I'll try to stay on the positive side, at least for another month.
I suppose I will go back on the prayer list from my church. Prayers do help, in my opinion. I think they were a God-send when I was so sick in the hospital.
Case report: regression of MGUS with long-term use of curcumin!
-
I wonder if these case reports will ever catch the eye of our MM
organisations, which, unfortunately, are so heavily sponsored by big
Pharma…Doubtful… 😕 ...
2 weeks ago
3 comments:
Hi Barry , I'm thinking of you . I too feel I have been lucky and shouldn't complain after nearly eight years of W&W , but now into progression and treatment , and it is difficult ( sometimes impossible - dark days ) to keep the worry at bay . Your blog makes me feel I'm not alone .
Good luck , I hope to read soon that things are more positive for you and that the dark days are brighter .
Dear Barry:
I am following your blog to see what happens with CAL-101/GS-1101.
I am in the NIH clinical trial with ibrutinib. My blog is:
drlaverne.blogspot.com
There is a Phase 3 trial with ibrutinib that should be posted soon on clinicaltrials.gov. I don't know all the details.
-- La Verne
Thanks for your posts. I am doing a bit better on CAL-101 (GS-1101), so we are continuing on the drug, in spite of some other problems (see later post).
Dr. La Verne: good luck with your trial!
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