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CLL Forum

Welcome to our CLL Community Forum – a Safe Haven for Sharing, Learning, and Connecting. Whether you're a patient, caregiver, or simply seeking information, join us to discuss experiences, treatment journeys, and find the support you need on your path with Chronic Lymphocytic Leukemia. Our forum is a judgment-free zone dedicated to fostering understanding and resilience in the face of CLL. Come together with a community that truly understands.

Adriana Maria Bagnara Member
Hi !! I found out about 3 months ago I have CLL in remission and I have it since 2016…. How come I never knew about it and only because of a blood test I got, which the rheumatologist ordered it before I was diagnosed with Polymyalgia Rheumatica .
Thank you
1. Angie Netterville Moderator & Contributor
  Hi! This sounds like a great question for your doctor or medical team. What I know about CLL is that it is slow growing. I was diagnosed with a different chronic leukemia like CLL and was told that it had likely been growing for years. It took getting very sick for them to find it in me. I'm sure others with CLL will chime in to share their experiences, but in the meantime, I have attached an article that might help. https://blood-cancer.com/treatment/cll-leukemia
  Thanks for sharing your experience. It is helpful for so many.
  Angie (Team Member)
Adriana Maria Bagnara Member
Thank you very much !!!
CommunityMembere7f69a Member
For me it's the side effects from Revlimid. My numbers go down (remission) then go up again and back on Revlimid. So now I'm on it permanently to keep me in remission.
1. Daniel Malito Moderator
  I guess we should be happy that they found something that worked at all. I know it can be tricky to feel good even though you have to be on medicine for the rest of your life. I actually was diagnosed with rheumatoid arthritis about 40 years ago before my cancer about 10 years ago so I was already on medication for life. Now that I have the lymphoma we have to watch it to make sure it doesn't come back, and in an ironic twist, the medicine I take for arthritis is actually a very close cousin to the medicine they gave me for cancer. How about that? Just know you are not alone and if there is anything we can do to help, let us know. Keep on keepin' on, DPM
2. Angie Netterville Moderator & Contributor
  so glad you can stay in remission, but what types of side effects are you having? Have they been manageable for you? Wishing you the best on your healing journey!
  Angie (Team Member)