the CLL listserv that I participated in has just announced. They were disbanding. This group was recommended by one of their members. I look forward to learning from all of you.
I was diagnosed with CLL in 2020; had rituximab and now I am on avatrombopag for ITP.
Val
Welcome Booklover and others joining from CLL ACOR.
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Neil
Welcome Booklover! I am sure you will like this forum, none of us wanted to be here, but as a CLL patient I can say from experience, I am extremely glad I joined. At the top I occasionally glance at the number of members, it's currently over 23,000. Not all members are very active of course, but I always take some kind of comfort or maybe it's validation that I'm not alone! You will find the members compassionate and very helpful. There are some CLL "grand masters" here who are very knowledgeable and are a rich source of information. The site doesn't attempt to replace your doctor, but it helps to understand and even talk to your medical team with better understanding.
Thank you for the encouragement. I look forward to using the site.
Hi Welcome,
I has a similar experience at the same time frame 2020. I believe I got it from dying my hair dark for over 20 years.
It Resulted in low hemoglobin however when I received the 4 infusions if Rituximab thank God it increased my hemoglobin to a normal level. So now I just monitor it. What was the results after your treatments with Rituximab?
Not as good as yours. At first platelets went up but then suddenly would go down. Then I was put on prednisone off and on for a year. Finally leveled off to 50-60 with occasional IVig infusions but dropped to 27 after covid and I ended up in the hospital for 4 days. Also had low sodium-20. Instead of starting treatment forCLL, I started taking a drug specifically for my low platelets (ITP: Immune thrombocytopenia purpura). That has kept my platelets stable.
Welcome!
I am here for my husband. He’s had CLL since 2013 and has had FCR and Venetoclax. He is currently doing well.
Fran 😉
Thanks for the welcome.
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