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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Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 21, 2022
In reply to @81ue "Still alive!!! Happy New Year Colleen! I'm still on Venclexta and still wondering if it is..." + (show)
@81ue

Still alive!!! Happy New Year Colleen! I'm still on Venclexta and still wondering if it is "for the rest of my life" I just gave a blood sample for a flow cytometry. Diagnosed B-PLL, still missing and grateful to have chatted online with the B-PLL online friends Barbara and Smith.

B-PLL is the lonely diagnosis that is treated like an aggressive high risk CLL and very rare.

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Have you asked your oncologist is Venclexta will be necessary for the rest of your life? Have you met @franchronic77?

REPLY
1 reply
franchronic77 | @franchronic77 | Jan 21, 2022
In reply to @colleenyoung "Have you asked your oncologist is Venclexta will be necessary for the rest of your life?..." + (show)
@colleenyoung

Have you asked your oncologist is Venclexta will be necessary for the rest of your life? Have you met @franchronic77?

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I hope to get some answers at Mayo.... Don't know if

I am.ready for treatment...just know I want to go least invasive first, And would like to delay treatment as long as possible. Twenty years ago Treatment for hep c was injection s of peg intron AB that reduced virus to undetectable, after months of awful flu like symptoms.Now standard medical practice is a pill and not a lengthy treatment. So yeah. Keep me away from that as long as possible, thanks. I was willing to do anything years ago .I don't feel that desperate. NHL had a new drug called retuximab....20 years ago. Gave me 20 years free of cancer.

.

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81ue... | @81ue | Oct 3, 2022

B-PLL no longer exists per the upcoming 5th edition of the World Health Organization Classification of Haematolymphoid Tumours.
B-PLL is now either:
a variant of mantle cell lymphoma;
PLL progression of CLL/SLL; or
Splenic B cell lymphoma/leukemia.

I'll be getting a new diagnostic label probably.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 4, 2022
In reply to @81ue "B-PLL no longer exists per the upcoming 5th edition of the World Health Organization Classification of..." + (show)
@81ue

B-PLL no longer exists per the upcoming 5th edition of the World Health Organization Classification of Haematolymphoid Tumours.
B-PLL is now either:
a variant of mantle cell lymphoma;
PLL progression of CLL/SLL; or
Splenic B cell lymphoma/leukemia.

I'll be getting a new diagnostic label probably.

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Interesting. Is this because more is being learned of the disease and new findings are coming out for classifications?
Well, a dubious honor indeed, to get a new diagnostic label. How have you been feeling? Is the treatment you’re on keeping things stable?

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1 reply
81ue... | @81ue | Oct 4, 2022
In reply to @loribmt "Interesting. Is this because more is being learned of the disease and new findings are coming..." + (show)
@loribmt

Interesting. Is this because more is being learned of the disease and new findings are coming out for classifications?
Well, a dubious honor indeed, to get a new diagnostic label. How have you been feeling? Is the treatment you’re on keeping things stable?

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B-PLL is too 'heterogenous' and they probably just gave up on it as being a separate thing. I've just been getting treatment as for an aggressive CLL, and I'm still alive (beat the dr. google 3 yr median b-pll survival already, so it's all coasting downhill from here and enjoying the extra ride).

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1 reply
81ue... | @81ue | Nov 11, 2022
In reply to @81ue "B-PLL is too 'heterogenous' and they probably just gave up on it as being a separate..." + (show)
@81ue

B-PLL is too 'heterogenous' and they probably just gave up on it as being a separate thing. I've just been getting treatment as for an aggressive CLL, and I'm still alive (beat the dr. google 3 yr median b-pll survival already, so it's all coasting downhill from here and enjoying the extra ride).

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Rather than a new label, my bone marrow biopsy was very good, I'm trying something new, will be off medication now. Such great news. I hope to stay in remission.

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Nov 11, 2022
In reply to @81ue "Rather than a new label, my bone marrow biopsy was very good, I'm trying something new,..." + (show)
@81ue

Rather than a new label, my bone marrow biopsy was very good, I'm trying something new, will be off medication now. Such great news. I hope to stay in remission.

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That’s awesome news, @81ue! Pretty cool no longer ‘being labeled’ at all except for a Remission badge with your name on it! ☺️ How often will you have followup appointments?

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81ue... | @81ue | Nov 14, 2022

Thank you Lori, I begin monitoring with monthly blood tests for the next half year and we'll adjust the monitoring depending on those results. My doctor saved my life and is happy with my bone marrow biopsy result and that I made it ( 2 hospitalizations and aggressive super mutant blood cancer). I hope others can get access to try and get great results from Venclexta/Rituximab types of combos too.

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