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
My husband was diagnosed with B-PLL last month and starts treatment early January. We live in PA. Difficult to find people who have it and as its all new to us we don't know what to expect.
Liked by Teresa, Volunteer Mentor, peggy1944
I'm sorry to say, Barbara passed away early this morning. It's the end of an era. She was a beautiful lady, had a kind heart, and was adored by all who knew her. She's going to be missed. Please carry on this blog that she started. Hopefully, some day there will be a cure. Robin.
Barbara J.- 11/28/1931-12/29/2019
Liked by Teresa, Volunteer Mentor, Lisa Lucier, peggy1944
Godspeed – Barbara. I didn’t know you – but from the writings you shared you sounded like a strong, fascinating person.
Liked by Teresa, Volunteer Mentor
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@friendofbarb Hello Robin,
I'm so sorry to hear of Barbara's death. You sound like you were a wonderful friend to her and her family! Blessings to you for being there for them. If you would like to share more about Barbara, please join a Connect discussion about Loss and Grief. Here is the link to a couple of those discussions.
I think you might have some wonderful thoughts to add. Once again, please accept my sympathies on your loss.
Liked by Justin McClanahan
Hello @cormac, welcome to Connect. Facing a new diagnosis can be intimidating and confusing, as is often shared by many of the members on Connect. @81ue, @achris and @zellheff have recently posted about their experiences with BPLL, survivorship and ongoing treatment.
@cormac, if you are comfortable sharing, how is your husband doing with symptoms? Which treatment will he be undergoing?
I'm so sorry to hear that, I'm glad she got to have her Christmas with relatives and her friend. RIP Barbara!
Dear Barbara, you were one incredibly inspiring lady, who gave hope to all your fellow sufferers. May the Lord keep you happy and truly healthy forever. You will be missed. Your courage will help many others fight this wicked disease.
Please,there must be someone else in a place as big as the Mayo Clinic who has at least heard of B-PLL although there does not seem to be anyone else in the hospital where I was getting treatments.If you don't want or can't write about it,just say YES.
yes. Husband about to start treatment
This is all very new and frustrating that its so rare. My husband is 64. He had a horrible reaction to the infusion Gazyva in Jan and spent a week in hosp (apparently with a unidentified infection). Now he is starting Venetoclax next week for a year. We will also get the infusions at some point. Is there anyone who has B-PLL who is familiar with this treatment? He doesn't have the 17p or TP53 mutations and has had the night sweats, weight loss, enlarged spleen and swollen lymph's.
I’m tagging @bullwinkle who had mentioned, "I may be in a trial which would consist of either Venetoclax,Ibrutinib, and gazyva or Ibrutinib and gazyva.” You can read the full post here:
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.
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