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.
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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!
Hello, Ann. Robin here. Barbara had a little setback and wound up at Kaiser for 6 days. She's home now, but with full-time in-home care. If I could get her to her computer, I'd get her to type a few lines. She's busy gabbing with one of the caregivers who just came on shift! Everyone is helping her with cooking, laundry, bathing, etc., and just keeping an eye on things. That's what she's needed for the past year, but I'm unable to be around that often. Well, can't get her to do any typing right now so I'm going to sign off. Hope you're doing well.
Hi Barbara, sorry to read you had a hospitalization. Hard to get up and about after something like that as muscles weaken so fast when you are in a hospital bed for days, and I'm glad you're home again with helpers. If your weather is nice I hope you can go outside for a short walk to enjoy, or even to stand outside.. I don't know if you are more fatigued now after the hospital, but if so, those shower seats are great to sit on inside the shower when even standing up is tiring. You must be a very strong woman. I recall how hard it was for me when i was off medication and I only managed to drag my legs forward in a slow shuffle with needing many rest breaks. You've been persevering much longer and only on transfusions. Keep strong and I hope you get your wellness levels back as best as can be under the circumstances.
Dear Ann, Barbara is in Hospice care now. She's no longer getting infusions. The poking and prodding with needles weren't helping her so she said that was enough. Her relatives are coming over for Christmas (some from Oregon) and she'll be having whatever they bring for dinner. She's put in an order for stuffing and cranberries, and dessert, as well as some real food! She's sleeping now and I don't want to awaken her, but I'll tell her that I've written to you. Hope she won't be upset with my telling you what's happening here. She's well-cared for and is as comfortable as can be expected. I know she wishes you well. I'll check in again soon. Robin.
Thank you for the update Robin, I wish you and Barbara and Barbara's family a Merry Christmas! I'm happy to read that she's comfortable and surrounded by relatives and you, her friend for the holidays. Home cooked meals are what Christmas memories are made from, and I'm glad that Barbara's able to put in her order of favorites. Hi Barbara! May you have a warm and wonderful Christmas!
God Bless you and Merry Christmas
Thank you both for your messages which I've relayed to Barb. She's resting now. Her youngest granddaughter, husband, and brood of 3 have arrived from Oregon and will come to the house around midday. Some of the fixin's are in the fridge already so all they have to do is heat up things and celebrate the day. It's nice that everyone has time off to visit, as they're out of town and have work and young families. She hopes you all have an enjoyable Christmas. Robin.
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