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

@northbay, I can understand both perspectives: yours and your husband's. Chemo is often referred to as the cure that is worse than the disease. I know you wish he could have tried treatment. Are you at peace with his decision?

I suppose I am but if things get worse then I’m afraid I won’t accept his refusal to do whatever it takes to get better. He sometimes thinks he knows more than the doctors. He feels they can’t help him. Unfortunately I would listen to the doctors and that’s where we differ.

@northbay, checking in today. How are you and your husband doing?

We’re doing fine. My husband’s lymph nodes have swollen in his armpits and neck. He says that’s what the Salicinium is supposed to do, but of course I still worry.

I was diagnosed with CLL in February 2020...further tests led to B-PLL diagnosis. On wait and Watch until December 2020 when my WBC count reached 357K. Began Imbruvica in late Dec. 2020 and WBC count now at 62K. No symptoms other than bruising and petecheae. Interested to hear from others in this group.

Hello @phyllis731 – I see this is your first post.
Welcome to Mayo Clinic Connect, an online community where people can share experiences and ask each other questions about any health issue.
We're not medical professionals who can offer medical advice.

I understand your interest in hearing from someone with some knowledge with your diagnosis.

What is the frequency that you currently have blood tests?

Bob

My blood tests are monthly. Since on Imbruvica, my WBC count has dropped from 357K to 62K...so the medication is working. No symptoms to speak of other than bruising and some petechia.

@phyllis731 - Thanks for the reply.

Hello, Blood Cancer & Disorders followers, is there anyone out there that can engage with @phyllis731 to connect on her diagnosis of B-PLL.

Thank you all.

Bob

Hi Phyllis, I add my welcome. Fellow members @cormac @81ue, @achris and @zellheff know first hand what it is like to live with B-cell prolymphocytic leukemia (B-PLL). I'm so thankful to @81ue for having started this discussion dedicated to B-PLL. She remembers well when she was the only person talking about this diagnosis. Because of her, new members with B-PLL no longer have to deal with this diagnosis alone.

Phyllis, I'm glad to hear that you are tolerating treatment with imbruvica well. Do you have any questions you'd like to ask others?

My hematologist is saying at this point that I will be on medication indefinitely. Has anyone been able to stop medication when and if scores reach normal?
I'be been fortunate that the cancer center got a grant that has covered the cost of my Imbruvica ($425 per pill @ 1 daily) from Dec 2020 to May 2021. I had to pay $350 this past month and $735 this month to reach a spenddown before the sociqal worker applies for payment by the pharmaceutical J&J, which would cover me to the end of the year. How are others affording their medication coverage? I have Medicare and a medication supplement but the cost is still prohibitive. Thanks for any info. Glad to be part of this group.