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
Watch and wait is what he is doing now after trying ibrutinib which gave him severe results.
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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.
@northbay, I can understand both perspectives: yours and your husband's. Chemo is often referred to as the cure that is worse than the disease. I know you wish he could have tried treatment. Are you at peace with his decision?
I suppose I am but if things get worse then I’m afraid I won’t accept his refusal to do whatever it takes to get better. He sometimes thinks he knows more than the doctors. He feels they can’t help him. Unfortunately I would listen to the doctors and that’s where we differ.
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