Mayo Clinic Connect
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.
Liked by peggy1944
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.
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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
I had a blood test today.The only one where I pay attention is the hgb @5.6 .Tues I will get 2 bags;next time I will try 2 wks again
If my red blood is at 8 I get considered for transfusion. Your 5.6 is scary low !
Yesterday my vein gave out in my left arm;so they had to switch to the right arm. I have to be 7.1 or lower before getting an infusion;maybe the old veins have something to do with that.I am going to test in 2 weeks the next time;since 5.6 does scare everyone (except me).I'm a tough ole bird!
When they tell me I have saggy or flat veins they say to drink water and that if the day before i drank a lot of water, then the veins would be better – so they say
My hgb was 6.7 on Sunday ; so I was given a 12:30 appt. on Tues; no one seemed to be in a hurry.I had 2 bags, and just barely made the 5 :pm closing.My veins are 87.5 old so was started slowly and sped up as they knew I could take it.
Barbara – I still have a hard time understanding how you are being allowed to go below 8.0 hemoglobin !!!!! Low normal is 11. You are getting down to 6.7 – that is sooooo low. Why aren't they worried about you going that low? That's approaching half of what you should have.
My dr. is starting to suggest stem cell transplant. I really don't want to but I will check it out. It is a high risk treatment.
Has anyone with B-PLL had any results with stem cell? Read all you can.I thought I had heard it was not for B-PLL,but we are not the same,I am going for a blood draw this sunday.Last sunday was 7.8 -far too high for me.I am only on palative care now.I'm hoping for a 6.something…..low enough for a transfusion,but not so low to be scary.
Barbara – I just search internet and I get normal range hemoglobin for women is 12.5–15.5. They need to let you have blood ! I'm so worried about you. Your numbers are too low. Thanks for the info on Stem Cell Transplant – I'll make an appointment and ask if SCT is for B-PLL. What bothers me most is they choose only the best candidates (healthiest) for the SCT procedure and only still have 67% overall success for the better hospitals. It's too high risk.
My hgb was 6.1 on Sunday;by Tuesday it will be 5.??. At least they are still treating me on the palative program –my choice.Keep up your research,but don't become their lab rat.
Barbara – can you get another doctor? Your HGB is way too low. Here is a mayo clinic article on what numbers are too low:
Mayo Clinic says low is less than 12. Too low risks anemia, and heart failure. I understand paliative program is your choice, but at least they can give you blood that you need?
I'm on venetoclax now after the imbruvica failure. I'm doing well with numbers. I just need to talk about stem cells to have another option ready in case the venetoclax fails, because I don't know if there is any other drug that I could go on for B-PLL, and the B-PLL is very aggressive (imbruvica was supposed to last for some years, but only lasted a little less than a year and a half.
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