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

I'll now put here my status. Diagnosed in 2017. Started on Imbruvica alone, then since 2019 I've been on Venetoclax, and completed the additional Rituxan infusions. I got 'chemo curls' and am watching to see if the R did it and if hair will straighten out now, or if it is the V. I'm told to be on V 'for the rest of my life' which means doctor is afraid to stop the medication. I think this is considered to be a medicated remission. Every day I feel exhausted and fatigued (how people with a flu might feel) and don't know if that is the medicine or the leukemia. I do remember what it feels like to be normal because I have that an hour or two first thing in the morning, then by afternoon its fatigue time and I need to lay down to take a break from just sitting. I do cardio once per week best I can (wipes out most energy of the day) and walk around the block each day. I'm happy to be alive, I look forward to my sketchbook and learning stuff about drawing and painting (that's my playground), it brings me joy and I should have been doing this before diagnosis. I like to go outside to feel the warmth of the sun, the breeze, and see the beauty of plants. My favorite weather is clouds in the sky, and the rare times when the sun is shining at the same time rain falls. I also like reading stuff.

So great to get your status update, 81ue. I'm curious about your username. What does 81ue stand for or signify? What type of reading do you like the most?

Hi Colleen. My username was a convenience on another site when I didn't know what to put and 'Blue' was taken. I used it here so that I can have the same identity if others see me on another cancer patient forum since there are so few of us with B-PLL. I mostly read articles in the news on internet (avoid tv bad news) and end up on tangent other topics it brings to mind, and most recently read Pride and Prejudice online since finding the complete copy there.

I may soon not belong in my B-PLL diagnosis with researchers debating about getting rid of it as a category.

"B-prolymphocytic leukemia (B-PLL) is included as a distinct entity in the current World Health Organization classification of hematolymphoid neoplasms. However, the diagnosis of B-PLL has presented several challenges since its conception, and over the past decades investigations of B-PLL have revealed substantial biologic and molecular heterogeneity. These data have shown that many B-PLL cases present many similarities with other types of small B-cell lymphomas, and that small B-cell lymphomas can undergo prolymphocytoid transformation. As a result, the frequency of B-PLL has markedly decreased, and currently B-PLL is a very rare entity. Most recent studies focused on B-PLL cases have been conducted on limited cohorts, precluding robust conclusions. In this article, we provide a concise historical review of B-PLL and describe the diagnostic and clinical challenges associated with establishing this diagnosis. We also argue that cases currently classified as B-PLL are unlikely to be a unique biologic entity, but rather represent a state of morphologic transformation characterized by many prolymphocytes that is shared by various types of small B-cell lymphoma." https://pubmed.ncbi.nlm.nih.gov/34293709/

Very interesting, @81ue. Has your oncologist indicated that your lymphoma may be transforming? Will this change the course of treatment?

My last flow cytometry they couldn't find the TP53 mutation anymore - which is a good thing I'd think - but not expected. I think a bone marrow biopsy would be more thorough on that issue. I asked for another flow cytometry the next few months given my cancer is ...I don't know....creative in the way it changes. I'll also look into another specialist to look at it after the flow cytometry. I'm wanting my plan B for what to do next. The article I mentioned is just the researchers disagreeing on whether there should even be a B-PLL separate category.

Dear Lori and Friends
Michael’s days have come to and end
The stage 4oesopheagal cancer took him in the end
Only diagnosed 2months ago
It was so aggressive,
It so so heartbreaking😓
He dealt with his disability for 35 years,
He died on Friday 3rd December and was buried yesterday
My 4 daughters and myself were with him at the end and the run up beforehand
It wasn’t an easy death either
Thank you all for your support and prayers
Much love🥲

Oh my sweet friend, I am truly heartbroken for you and your family. You’ve been such a champion and steadfast, loving partner to Michael for over 35 years. You’ve seen him fight through the challenges of paralysis and gave him unconditional love and support.

It’s a small blessing that you could all be with him in his final hours. It’s a memory you’ll treasure to know you were with him until the end. I lost my mum right before Christmas years ago. I held her hand, sang Amazing Grace, said the 23 Psalm and at the end of the Lord’s Prayer, she squeezed my hand and departed this world. I cherish that memory of our last time together.

I hope that you and your daughters will remember the love shared in that moment and know Michael felt it too. Knowing what a difficult time this is, my thoughts and prayers are with you and your family, especially during this holiday season. Share stories about Michael, they’ll keep him close in your heart.

I’m here for you anytime you want to share what you’re feeling or need to talk. I wish I could reach through this screen and give you a huge embrace for love and support…especially love. Are you coping ok for now? Are your daughters able to be with you for a while?

hearttoheart1 - I'm so sorry for your loss, may the good memories and love you shared hold you through this difficult time

I have cll.Ive been observed since 2019.My wbc is 82 now. I got 2nd opinion ( online) from UVSD saying I was rai 1. My spleen is 13.The oncologist monitoring me is sending me to another gastric m.d.to see if I can go on acalabrutinib pill. I had nlh in 2001 and achieved remission after 8 rounds of iv drip retuximab. 19 yrs.later cll entered.I live in an area that has a " trauma " hospital without a cardiologist on staff. The hospital where my hemotologist/ oncologist practices doesn't have a gastroenterologist. I am terrified to begin any therapy without 1 of those on staff. She's proposing the Venetoclax/ Obinutuzumab, or Acalabrutinib for life. I need another opinion. Help.