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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.
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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