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Is anyone dealing with CLL, Chronic Lymphoma Leukemia?
Blood Cancers & Disorders | Last Active: Jan 30 7:17am | Replies (41)Comment receiving replies
Hi. I'm 51 & was diagnosed with CLL in 2019 (although I'm pretty sure I've had it longer than that), I'm currently on wait & watch with blood tests every three months. The CLL has made me lactose intolerant & my lymph nodes are massive ( they are very visible). Apparently CLL can make you prone to other types of cancer & in the last year I've had 5 skin cancers cut out. I'm not on any treatment because my doctor says my blood numbers aren't bad enough to warrant it. Is this normal or is it bad management of my condition? I want to start some sort of treatment to reduce the size of my nodes as it's really starting to bother me. Should I stick with my current cancer GP or go private to get things moving? Any advice would be greatly appreciated.
Replies to "Hi. I'm 51 & was diagnosed with CLL in 2019 (although I'm pretty sure I've had..."
@johnwhitley how come your GP hasn’t referred you to a hematologist/ Oncologist. You should. Be seeing a specialist. I have AML now. 9 years ago I was diagnosed with MDS. I was a watch a see. My hematologist checked me every 6 minthe them every 3 months then gradually it progressed to
AML. I had a bone marrow biopsy several
Times over the years but the last one came back border line AML but still my counts were unusual but she started me on treatment called the 7+3. You go for chemo infusions in your belly 2 a day for 5 days and weekends off then Monday and Tuesday. I also take a chemo pill every day and the rest of the week when my infusions are done. I was put on vidaza and ventoclax. This is a new treatment for seniors who can’t have a bone Marrow transplant which is the only cure. The treatments are not bad. I mean my stomach is sore by the end of the week. But no nausea snd I eat well. It is not a cure but as long as the treatments work you can live longer. Also they can give you more time in between treatments from 4 weeks out to 6 weeks. They can also cut back on the infusions from 7 to 5. The idea is to put it in remission. After my first cycle I had a bone marrow biopsy and I was in remission. But I will always be im treatments. They have to find what they call the sweet spot where you do less treatments and more time in between and you stay in remission. I have the best care in oncology. They take Beth good care of me and we laugh a lot. I call it going to my new job. Good luck.
@johnwhitley Hi, I was dx'd May2024 with CLL stage 4 - I had high WBCs in my blood and bone marrow, (barely) enlarged lymph nodes, and a slightly enlarged spleen. They started me on a BTKi drug called Zanubrutinib (pills twice a day) & it has worked well with no side effects.
There are SO MANY treatment options to consider - which one will depend on your specific situation. A second opinion is a great idea. As noted by @ftmolloy , the CLL society offers them for free – I'd strongly suggest you try that route as a next step.
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@johnwhitley the “CLL SOCIETY” has a program for expert second opinions. If you haven’t already seen it, you may want to check it out. Good luck and God Bless