After three months of remission, my local oncologist believes CLL is back but wants to wait until I've seen the specialist before selecting a treatment plan. I'm waiting until the specialist has his say before telling friends or my employer (hell yes I'm still working! And I plan to continue working so long as I'm able to provide sufficient service.)
Who else has been back in the saddle this quickly? I knew CLL would return unless something else killed me first, but this seems a little fast.
Is there something I might do better this time? Would it be fair to assume the last biopsy just hit a pocket of sunshine?
Should I consider changing tertiary specialist?
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Smedley54
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I had a six-month course of obinutuzumab and chlorambucil in 2015 which barely held me for a month afterwards before my lymphocyte count shot up from 12 to 40 and my nodes popped back up. But I do have 17p. I'm now on Zanuibrutinib, which seems to be working fine.
That happened to me. I went through FCR chemo and after that I was in remission, but then 2 1/2 years later It came back. I went through six more months of FCR, and I was told again that I was in remission, but then three months later it was back. (Now I take Imbruvica.)
I think you need some advice from a CLL expert rather than a local oncologist. If they agree that it's back then you will probably be advised to have Ibrutinib which is a great drug if its affordable in your circumstances.
I had a full round of Gazyva only, in late 2016. About 5 months later I developed an inflamed parotid gland. They did biopsy several months later including lymph nodes and the marginal zone lymphoma has returned. But since my blood numbers have been good it's been watch and wait. I do have MZL, but it's treated the same. Ibrutinub sounds like it will be my second line treatment.
Hi. I went thru Gazyva and chlorambucil in 2015. My neutrophils were very low ended up in the hospital for 5 days with neutropenia . Had a lot of problems after the Gazyva . Lymph nodes were down ,but very sick with colds and exhausted all the time . The only positive outcome with the treatment was lymph nodes went down. In 2017 after I started imbruvica I was transfused for low hemoglobin and platelets. There were 14 of them. Now I'm on imbruvica since August of 2017 and feeling great. I was feeling tired for a while but all seems to be good. My platelet count hovers around 70,000. My Dr at last visit said that looking at my blood work no one would know I have cll. Dx in 2010 after having breast cancer ,I'm 73 yrs. female. Hoping that this med will give me a few more years. Wishing you all the best. I pray for all cancer patients and survivors. 😘❤️🙏🏻
Imbruvica was the first chemo agent I tried. It seemed to work for two weeks, but then my body revolted, and I was mercifully allowed to stop taking it.
Thanks for the clarification. Imbruvica (ibrutinib) is not chemo, it's a kinase inhibitor.
I did very poorly on Imbruvica (ibrutinib) and had to stop due to bleeding and A.fib, moved on to Zydelig (idelalisib) and rituxan, and it was much better, some side effects, but fairly transient.
Sometimes I hurt for oncologists. Mine was very friendly during the last couple of appointments, but when it became apparent that something was wrong, and once I asked if it was back, he returned to businesslike and began rattling off the different possible treatments, and reassuring me that many of them were oral. They deal with so much sad news that they cherish a win, so it must hurt for a patient to relapse this soon. From the CLL Specialists reaction, he's struggling with denial.
My priority is finding a tolerable regimen before the next school term begins so that I can survive and teach every day.
Not as fast as 3 months, but a few times after a year or so.
Dear Smedley54
Thank you for your post. I'm saddened to learn that the CLL quickly returned. Had you stopped your treatment or did the CLL return despite the continuing treatment?
About six weeks ago I learned that my CLL was in remission. I expected to be elated but because I still needed blood transfusions and nothing seemed to have changed health-wise, except the diagnosis, I felt perplexed.
I wrote a post titled "Remission - what does it mean?" I figured out that "Remission" and "Recovery" are different and that it can take months and years to regain one's health. I have also realised that "Remission" can be fragile and that the treatments for CLL can alleviate the symptoms without touching the disease.
I remain steady by knowing the best and the worst of what can happen "in remission". "No surprises" suits me just fine. For this reason, I find your post helpful in understanding the CLL landscape and knowing that there are different ways of travelling through it.
You are so right about remission! I finished six months of chemo in January, and a bone marrow sample taken in February had no significant sign of CLL - 0%. Like you, I learned that remission does not mean healed, so I've tried to remain patient with recovery. Something went wrong along the way. It has been an unpleasant surprise, but I remember that without treatment I would have never met my Grandson, and I'm grateful.
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