I have a decision to make and would like your feedback. I read the posts regularly but don't post much.
I was diagnosed with CLL last year 6/15 at age 65 (though I suspect it really started around 2009 when I had a slightly elevated absolute lymphocyte count and a swollen lymph node in my neck. I live in the Washington, DC area and have had all the tests and then some. I have been to my local hem/onc; Georgetown, OSU (John Byrd) and NIH.
I am complex karyotype headed by 11Q/ATM; negative for 17P and TP53; CD38+, ZAP70+, NOTCH 1+, unmutated IgVH, etc. My blood work isn't awful (pretty much just high wbc, lymphs) but I have lots of lymphadenopathy inside and out with wierd neuralgias, am very fatigued, and have night sweats . Dr. Byrd feels it is time for treatment and so do I especially with the complex karyotype.
1. Acalabrutinib clinical trial at NIH - easy peasy and no cost at all. But I would have to stay on acalabrutib until I relapse/resist/etc.; or
2. Triple clinical trial at OSU (Byrd) for obinutuzimab, Ibrutinib and Venetoclax for 14 months. We pay copays on Ibrutinib and whatever medicare and supplement doesn't pay for treatment/tests/lodging/transportation/etc. At the end of 14 months, we can try to discontinue all treatment if good response.
The dilemna: My prognosis isn't great because of the complex karyotype (Dr. Byrd says this trumps 17P). Dr. Byrd feels either choice would be a good choice for me but ever so slightly favors the OSU triple.
I know acalabrutinib will not "cure" me but would be easy as I live 40 minutes from NIH and the trial itself as well as the side effects should be no biggy and can buy me time for the "cure"
The triple would be a very tough 14 months commuting back and forth to Columbus (and the costs involved), and the side effect profiles of all 3 drugs scare me. It is also very early in this study. I believe that combo treatments might be the future "cure".
Quality of life is really important to me as I have "almost" 4 young grandkids who I adore. My gut is telling me to go for the acalabrutinib to buy time until these combos have more results and have been tweaked. I must admit that I may be a bit risk adverse.
So what do you all think?
Thanks so much for your input,
Best to you all,