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Does anyone have B-cell prolymphocytic leukemia (B-PLL)?
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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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.
I sent you a private message
My husband was diagnosed with PLL. He had the lymph node removed. The PLL did not show up in his bone marrow biopsy.
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?
Watch and wait is what he is doing now after trying ibrutinib which gave him severe results.
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
Remembering Barbara - Almost a year ago now, Barbara passed away. Barbara had the rare diagnosis B-PLL and started this subgroup looking for others to connect with for support. She gave us, who came after her, a place to start to find others who have B-PLL. When you're alone searching on internet, finding someone else gives hope. Barbara's path was a difficult one, hard to see her go through that, and yet she continued to share her experiences with us. Thank you to Barbara, RIP.
@81ue, what a lovely tribute to Barbara (@bflattenor). You're so right that Barbara's legacy of sharing and caring lives on in this subgroup on Mayo Clinic Connect. I share this moment of memory and gratitude with you. Rest easy, Barb.
@81ue, checking in. How are you doing?
My husband is not doing chemo as he’s had it twice and found that it did a lot of harm His aortic valve had to be replaced. He is trying Salicinium with the hopes that it might maintain his health. I would have rather he tried a treatment but he refuses at this point.