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

Hello Barbara! I have been gone so long I am really too embarrassed to post! Am so glad you are boning up on Vitamin C, I believe it is essential to your overall well-being. Hope today you are doing OK and getting healing sleep, I actually slept past noon after going to bed early. Best wishes, Peggy

Barbara - I wonder why only one bag was better? But good results are welcome! Fluid retention can be painful and decrease activities levels, I'm hoping you don't have that with the one bag. I have my next dr visit next week and will see what my WBC is doing, hoping for it to increase to normal

I think I am joking because was given 10+which is my boyfriend's type. His leukemia is almost as bad as ours.It's the other way around. If you have fluid retention, your veins can't handle 2 bags.I'm learning.This one bag looked awfully skimpy.....later.

Skimpy was putting it mildly! My red cells were 1.72 @Hgb 5.0 this Sunday.There was a shortage of nurses and they tried to put me off until Tues ,but I convinced them it wasn't a good idea.They (whoever they are) decided I was right so they ordered 3 bags....2 on Monday and 1 on Tues.I think I am going to do a lot of sleeping tomorrow

Barbara I'm glad you stuck up for yourself and what you needed. Good!

I'm thinking about you Barbara, I hope you are okay

Hi. I'm Barbara's friend. She's been unable to access her account, but didn't want you to think she was not trying to respond. She's OK, but says her laptop is sick! Send any comments or correspondence to me and I'll just read them to her. (I'm on her computer anyway.) She hopes you're doing well and getting some treatments that are working. Robin

barbara - please ask your doctor about procrit which is used to help increase red blood cells to prevent the constant need for transfusions - i was on 30,000
below is a reference - praying for you

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About Epoetin alfa https://en.m.wikipedia.org/wiki/Epoetin_alfa

AChris, do you also have B-cell prolymphocytic leukemia? Or were you taking Procrit (epoetin alfa) for a different condition?

Colleen, I am a PLL survivor and was moved by the discussion group.
I have been in remission since 2001, but was on procrit and neupogen when undergoing treatments.
God Bless you for your thoughts and prayers.
Sincerely, Art