1. < Blood Cancers & Disorders

Does anyone have B-cell prolymphocytic leukemia (B-PLL)?

Posted by bflattenor @bflattenor, Aug 6, 2018

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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cormac | @cormac | Dec 29, 2019

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.

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1 reply
friendofbarb | @friendofbarb | Dec 29, 2019

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

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3 replies
zellheff | @zellheff | Dec 29, 2019

Godspeed - Barbara. I didn’t know you - but from the writings you shared you sounded like a strong, fascinating person.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 30, 2019
In reply to @friendofbarb "I'm sorry to say, Barbara passed away early this morning. It's the end of an era...." + (show)
@friendofbarb

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

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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.

https://connect.mayoclinic.org/discussion/loss-and-grief-how-are-you-doing/ and
https://connect.mayoclinic.org/discussion/can-joy-and-grief-live-together/
I think you might have some wonderful thoughts to add. Once again, please accept my sympathies on your loss.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Dec 30, 2019
In reply to @cormac "My husband was diagnosed with B-PLL last month and starts treatment early January. We live in..." + (show)
@cormac

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.

Jump to this post

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?

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1 reply
81ue... | @81ue | Jan 1, 2020
In reply to @friendofbarb "I'm sorry to say, Barbara passed away early this morning. It's the end of an era...." + (show)
@friendofbarb

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

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

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peggy1944 | @peggy1944 | Jan 4, 2020
In reply to @friendofbarb "I'm sorry to say, Barbara passed away early this morning. It's the end of an era...." + (show)
@friendofbarb

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

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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.

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cormac | @cormac | Jan 25, 2020
In reply to @bflattenor "Please,there must be someone else in a place as big as the Mayo Clinic who has..." + (show)
@bflattenor

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.

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yes. Husband about to start treatment

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cormac | @cormac | Jan 25, 2020
In reply to @JustinMcClanahan "Hello @cormac, welcome to Connect. Facing a new diagnosis can be intimidating and confusing, as is..." + (show)
@JustinMcClanahan

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?

Jump to this post

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.

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2 replies
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Jan 25, 2020
In reply to @cormac "This is all very new and frustrating that its so rare. My husband is 64. He..." + (show)
@cormac

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.

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Hi @cormac,

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:
https://connect.mayoclinic.org/discussion/using-pulsating-electro-magnetic-fields-as-an-adjunct-in-treating-cll/

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