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

Happy New Year!!!! I wish for health and happiness to you all in 2022. Spend time for family, friends, and what brings joy to your day. Cherish each day, make it a great one!

How long is wait time for Mayo appt.? I realize it's a holiday now and nada gets done. I am anticipating March 2022.¿ Thoughts?

Hi Fran, appointment wait times may be longer than usual during these unprecedented times. There are many factors that get considered.
Did you have your phone appointment already? Did they give you an indication of how long the wait may be?

Happy New Year to you to, @81ue. How are you doing these days?

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.

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

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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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.

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?

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).