I have not been on this site a lot lately (apologies) but have found it very useful, knowledgeable and kind. In 2020, after 10 years, my CLL became active, I also was diagnosed with Hemolytic Anemia, spent 9 days in the hospital, after being admitted in serious condition. I was treated with a combination of Rituxan and Prednisone (8 rounds of infusions) with three days of infusions each round. I had a really good oncologist who was a CLL specialist who has since left to go work at Princeton University. The person I have now is good, but not a specialist and it looks like I am headed for treatment again. I go see the oncologist Monday.
My last blood count result were WBC 97,500 (not quite doubling over 6 months); RBC 3.43; Hgb 10.8 (down from 13.5 3 month ago) HCT 32.5; RDW 17.6; Platelets 85,000 (they have stayed in that range since last treatment); Lymphocytes 95%; Reticulocyte 4.7; and Uric Acid 9.3.
My questions and concerns are: What are the thoughts of the learned and knowledgeable people on here as far as next steps in terms of treatment? What kinds of things/options should I think about? What should I ask in my visit with my oncologist? I am 76 years young. It would be really helpful to have some additional perspectives and ideas before my visit. Thanks!
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Dodger47
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By the pre-2018 iwCLL guidelines, you'd now be in the window for when CLL treatment was recommended. (The 2018 update allowed monitoring to continue when platelets dropped below 100, provided they were stable, which you note has been the case for you.) So you now need to ensure you don't leave treatment too long - and miss the optimum treatment window.
I expect you appreciate by now that it's trends that are important. Your CLL is definitely active with that lymphocyte doubling time, but of most importance, are the trends in your haemoglobin and platelets. I would expect that your bone marrow is now fairly heavily infiltrated with CLL, probably in the 90% + range. So with active CLL, assuming 90% bone marrow infiltration, for a 1% increase in infiltration now, you'll get a 10% and worsening over time reduction in your capacity to make blood cells. I had a very similar haemoglobin count to yours before I started treatment - it dropped from 119 to 105 in the month prior to starting treatment and I needed a couple of packed red blood cell transfusions in my first month of treatment. That was after 11 years of watch and wait. Despite my platelets being in the 70 to 50 range before treatment, I surprisingly didn't need any platelet transfusions. In retrospect, I would have had a far easier start to treatment if I had started earlier, but I had a month's delay waiting for a trial hold to be lifted, then another month waiting for blood testing to be done to ensure I complied with the trial inclusion and exclusion criteria.
Being US based, your treatment should be in concurrence with the latest NCCN guidelines, so here are the NCCN Guidelines for Patients, based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Chronic Lymphocytic Leukemia/ Small Lymphocytic Lymphoma, currently version 1.2024 — November 3, 2023
Thanks so much for the response and information. It is good to hear stories of other's situations as we go on this journey. I am ready to take on treatment and hopeful for a good outcome. Your leadership in this group is vital and very much appreciated.
Hello Dodger47, I do not have any technical help to lend, but wanted to wish you well as you begin anew with your treatment. I imagine you will find some differences this time around. Take good care and come to your community here anytime you need us. Do let us know how you are getting along, if you can. Carolyn
You sound exactly like I did from several years ago. All the same symptoms only I am 9 years younger. Before rituxan I did prednisone only and I did improve where I was able to function pretty good. This lasted about a month before my numbers dropped and I had to do it again. This time however it didn't work and I had to do 5 rounds of rituxan. For me it was a miraculous recovery with no side effects. My blood work now is pretty much normal in all areas and to look at it you would never suspect CLL. Hope this has been helpful and best of luck to you in the future.
I am hoping a second round will give me about 4 more years, like the first. A little anxious, but ready to tackle this again. Thanks for the well wishes.
I too have nothing technical to suggest but just know that we are rooting for your improvement. I had 13yrs 8mos in W&W & I convinced myself that I’d never need treatment & I believe that is what stretched it out so long, mind over matter. I’m treatment naive with Zanubritinib & it is the latest cBTKI & just amazing. I had a rough start because my side effects were ignored. But now I have a great CLL Specialist & some other wonderful team mates & I am finding my new normal! I dropped everything when I hit stage 4 so now I am seeing what I can pick back up. Exercise was the best thing to pick back up so far, it helps my mind, body & spirit. #GODSpeed🙏🏾
Thanks so much for your response. The uncertainty is what is nerve wracking. Once I get a plan, I know it will be better. I am a bit apprehensive about my Oncologist, just not many options in the midwest in the U.S. unless I travel. I will see what options he suggests and go from there. Again, thanks!
I’ve had Ritixan twice now. Once for AIHA and again for ITP. I’m not really sure if it worked for AIHA because I developed PRCA during this time too. I was put on cyclosporin and was able to taper off of it completely. No more AIHA.
THE RITIXAN put the ITP in its place.
Rituxan lowers all of my white count so I become neutropenic and need Neupagen shots until they recover. It also keeps CLL at bay.
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Looking for a fifth line of CLL treatment
on watch and wait for 6 years. Numbers are going up and doc this treatment is coming
Acalabrutinib treatment going well
Access to treatment and priority PCRs again
