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Does anyone have B-PLL or have been a caregiver for someone who has or has had B-PLL? I need to communicate with someone who understands.
@bflattenor, thank you for starting a discussion on the rare diagnosis of B-PLL. While we wait for other members to join the discussion, would you mind sharing what treatments you or your loved one are going through? Am I understanding correctly that B-PLL is when CLL morphs in to a more a rare form involving the B-cells?
My belief is not that CLL morph into B cell,but there was a more thorough diagnosis after a bone marrow test. At first I was given Chlorambucil (Leukeran) a derivative of mustard gas.Next I was given something that costs thousands per dose.Sorry I don't seem to have the name.After the correct diagnosis of B-PLL I was given an infusion of Rtiuxan and Bendamustine.This was so bad;they had to knock me out with Demerol. My reaction was somewhat I imagine like having the DT's.Before I had to take zyrtek to prevent just such a reaction;was also given Zofran for after reactions,but didn't seem to need it on the low dose they had to use.After so much time with negative reactions (Zombie like); I decided on quality of life over length. I don't seem to have much time ,but today my Doctor answered my question the way I wanted to hear it :no pain ,no lingering in the hospital,just go to sleep and not wake up.Isn't that the way we all want to go?
Just returned from the hospital from getting a blood infusion. My lab read out was what would be low for someone else,but for me they were quite good. Normally I would wait until they were a little lower,but I was very tired and having some trouble breathing.(Hbg7.4 White 2.9) Tomorrow is a new day and we'll see what it may bring thanks to some kind sole who saw fit to share his blood with someone like me and add a few more days to my life.
Please,there must be someone else in a place as big as the Mayo Clinic who has at least heard of B-PLL although there does not seem to be anyone else in the hospital where I was getting treatments.If you don't want or can't write about it,just say YES.
Thank you for this new article. It is more advanced than what I have read in Wikipedia in the past.
There was an article in Wikipedia about a woman in Japan who had an enlarged spleen due to B-PLL.After treatment she went into remission.Needless I was excited about this,but the rest of the article was in japanese carictures. I printed it out and took it to a friend who could translate it,and found to my dismay the story was about a man who broke his hip and was found to have leukemia.No mention of what kind or what happened to him. SO MUCH FOR WIKIPEDIA!!!
My last hbg was 6.6,the one before was 6.2 and they couldn't get me in there fast enough. All I can get at one time is 2 bags at the infusion.I must have needed more ;therefore there was only a two week gap in between.Let;s see what another two weeks will bring.Tomorrow I am meeting my Oncologist's assistant.I hope that doesn't she is giving up on me. I seem to be in full charge of my treatments. Whenever I feel that I need blood; I go to the lab have a test ,and someone sets up an appointment. I have not been wrong so far.Still would like to meet a caregiver for someone else with B-PLL.
I've had another 6.2 hgb reading and was rushed in for another infusion.Usually I use my left arm for both in and out,but this time we had to switch to the right since I "blew" out the vein they were using.No more Sudoku to make the time pass more quickly.I used to cherish the time because it was adding to my life span,but 2 weeks does not seem to be enough for what I go through.At the beginning of this year,I never thought I would not make it to my next birthday…..well I have just 2 more hours to go.
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@bflattenor, if you are comfortable sharing and you don't mind me asking, it sounds as though your infusions and prognosis are not doing as well as you had hoped?
The infusions seem to give me only 2 weeks in between.None of the medications have worked at all as far as I can tell;so I stopped them all.I'm very grateful to the donors who have given me the 2 weeks,but it's hardly worth using it on me.I know I seem sorry for myself and sometime I am,but I'm just very,very tired.Thank you for your concern.
I had my last appointment today. The Oncologist will just call me on the phone. I still receive an infusion every other week.It will get closer until it can no longer be done. Here's a question for you. If I am so full of other people's blood,why has it not changed my DNA?…or has it? Just keeping up what's left of my sense of humor.
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