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
I'm thinking about you Barbara, I hope you are okay
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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
Hi @achris and welcome to Connect. I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post the link for you.
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.
Liked by Colleen Young, Connect Director
Hi @friendofbarb, how kind of you to relay messages to @bflattenor. Sorry to hear that her laptop is not cooperating. Is the issue her computer or accessing her account? If it is an issue with accessing her account, I can help. Please send me a message, describing the issue using this form https://connect.mayoclinic.org/contact-a-community-moderator/
Hi Barbara – I hope you can get on your account again, and I'm glad to hear you're doing well given the limitations of the transfusions. I'm still doing well on venetoclax
This is Robin, answering for Barbara. Hope you had a nice Thanksgiving. Barb had her 88th birthday yesterday, along with the Thanksgiving meal her granddaughter brought over. Maybe we'll eat some leftovers in a while. There's not much sense in trying to get her account working again. I can log on with my account and she can either dictate what she wants to write, or she can cruise over to the computer while I'm logged on and write any updates she has. She's napping right now so I'd rather not disturb her. Later this evening she'll probably read your post. Glad your treatment is going well.
Happy Birthday Barbara!
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