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Posts (43)

Wed, Apr 8 3:35pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

After I had to get off of imbruvica (due to that type of drug not working any more and me getting hospitalized with sepsis) I went on venetoclax with very good results and have been on it one year now. If you can get that, try it. An alternative to imbruvica (if you need an alternate but similar drug) is to try acalabrutinib which is supposed to have less side effects than imbruvica

Please note that B-PLL is treated the same as a high risk CLL (chronic lymphoctyic leukemia) due to there are so few of us out there with B-PLL. So the drugs for CLL high risk cases should be considered for use for your husband's B-PLL case

Wed, Apr 1 5:52pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

Hi, B-PLL is an aggressive cancer, if it didn't show up in the bone marrow I'd take that as a good sign that the cancer was caught early and didn't take over the marrow. I had 70% to 80% in marrow before it was found. What is the treatment recommendation, or are you on watch and wait?

Sun, Jan 26 11:11am · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

Hi @cormac, I previously sent you a private message on Jan 1. I have b-pll and after imbruvica failed I'm on venetoclax and infusions of rituxan (the older brother of newer "better" gazyva). It has been 9 months, no night sweats, better energy, few side-effects. I had the bad marker disappear on venetoclax to the amazement of my dr.

Sun, Jan 26 11:13am · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

I sent you a private message

Wed, Jan 1 12:22pm · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

I'm so sorry to hear that, I'm glad she got to have her Christmas with relatives and her friend. RIP Barbara!

Dec 24, 2019 · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

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!

Dec 14, 2019 · B-cell prolymphocytic leukemia (B-PLL) in Blood Cancers & Disorders

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.