Does anyone have B-cell prolymphocytic leukemia (B-PLL)?

Barbara - Correct. I asked my P.A. the last visit if I could go on Venetoclax (due to promising trials of taking both Venetoclax and Imbruvica or only Venetoclax) but was told they want to keep that or other next step drugs in reserve for when/if the imbruvica fails. I was thinking that if it could get myself to minimal residual disease that it would be good to blast the cancer now with all they got, but the dr and the specialist both were talking about plan A, plan B etc.and to keep treatment next steps in reserve. So for me, Venetoclax would be what I would ask for next since I have the 17p deletion. I don't want to have the stem cell transplant. For me I'll do anything before that - it's too scary to have bone marrow killed and then someone else's put in, Seems that the average is 60% success rate, so I'd have to save that as the last option The leukemia and lymphoma society page for B-PLL still says "While ibrutinib and idelalisib have not currently been FDA approved to treat B-PLL, they have been approved to treat other B-cell malignancies." But I'm already on Imbruvica now for a year and 4 months. They need to update pages and we need to push for drugs since we're not numerous enough to have our own clinical trials for B-PLL. In some clinical trials it seems we are allowed in with other conditions like CLL/SLL (I go to clincialtrials dot gov ). I already know that I'd not consider a clinical trial using fludarabine plus other drugs (it didn't work at all for me when dr's tried it on me)

I went in on the 5th and again only one bag of blood. There is the possibility the reason has to do with the fact that I was on antibiotics up to that period.We'll see in 2 weeks, if all goes right .It's good that your Doctors are being cautious ,but still trying whatever is possible and correct. I have read that stem cell is not right for B-PLL; so don't even worry. Always check the internet before you start to think either pro or con.My fractured hip is healing very quickly. I can now put my full weight on my left foot,but due to ten years of arthritis ,my right knee is a problem that can't be treated due to the B-PLL.

Barbara - I never heard that stem cell treatments aren't right for B-Pll. That's interesting. If you remember the author I'd like to look that up and why they said that so I can bring it up if transplant is suggested to me again. I went to a specialist at UCSD that wanted to sign me up for transplant just about 5-6 months of being on imbruvica, and not wanting to give that drug a chance. Reason: He said that if I go into remission it wouldn't last long. He specialized in transplants so I kinda knew he'd recommend that for treatment, but it really scared me. I think his strategy was to increase chances of success of the transplant while I was relatively strong instead of waiting for the imbruvica to fail. I go for blood tests every 8 weeks now (I used to go every week for the longest time, then slowly got the visits farther apart to 2 weeks, to 3 weeks etc.) I next go in again in a couple weeks and will ask if I can stretch out the visit yet again - if they let me. I know I needed close monitoring in the beginning, and if safe I'd like to put more weeks in between visits. Imbruvica is a relatively new drug - maybe I can be on it for years like the CLL people?

I think I found that article about stem cell transplants - from American Society of Hematology 's page called "Hematology, the education program",and the article was called Management of prolymphocytic leukemia by author Claire Dearden .
"In B-PLL, there are a number of case reports of successful transplants, although inevitably case reports are misleading because they fail to highlight the number of unsuccessful cases. Kalaycio et al report on 11 cases of B-PLL with a median follow-up of 13 months. At 1 year, Progression Free Survival was 33% and Transplant Related Mortality was 28%,..." (they don't say what happened with the other 39% of transplants so i assume they continued struggling with B-Pll and other treatments).

What does it mean "successful" transplants? not showing in the blood test any more? or living over 6 years, the maximum anyone has survived B-PLL so far? I was given 2 bags today.Why? According to the nurse I should bring my lunch on days I am getting 2 bags. Is that all? I'm sorry,I'm really,really tired today.I do believe the way we are being treated has a lot to do with our age difference and how long I have had it. HANG IN THERE!!!

Barbara, your situation really worries me. I don't know much about transplants but a 33% success and not mentioning the other 39% leaves it very vague for me. Good point - they don't say what 'successful' means. I found it hard to accept the 28% mortality reported in the transplant study for B-PLL. I really would hope that they don't treat people different based on age, but I do know that they do that with transplants so maybe with other treatments too? I also think that it has to do with NO ONE is a specialist for our rare diagnosis. We don't have someone to go to that knows this disease. I'm going to a dr. that sees generally all cancers. I also got the sense that they didn't know what to do with me when they first got me. They wanted to but then were afraid to give me rituximab when I didn't respond to chemo fludarabine (it was supposed to be both given to me). I hate reading the literature on how long we are supposed to last. It's just bad news! I only hope its old news and old research and as we treat this condition they figure out what works. So far for me it's imbruvica and the daily fatigue that goes with it. I don't know how long you sit for the transfusion, but I remember when I had mine it lasted soooo long at those transfusion rooms where everyone is sitting in a reclining armchair and hooked up to get blood and iv 'hydration' - i hated the hydration because they pumped in too much. Anyway, it takes so long maybe that's why they want you to have lunch with you. Take care of yourself !

Barbara, I found another one like us on HeatlhUnlocked in the CLL forum. That forum has a lot of great articles,on treatments and symptoms , some of it is useful for me (like imbruvica discussions). Its more geared to knowledge than support though.

Surry I was so long getting back. My 2week blood infusion ran into 3,and it was so low the caller tried desperately to get me to go to the ER. I have had enough of that place! 1st thing Monday morning worked out OK. Your new forum sounds great since I believe knowledge takes precedence over support.Be weary of the CLL group---they are not like us.

Hi Barbara - the imbruvica failed, I was in the hospital a week and got 2 bags transfusion, Im waiting for the dr to come up with something new

I got 2 more bags infusion today. Yesterday was my first rituxan chemo and it was rough with side effects