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

I am curious as to what types of symptoms others with B-PLL have had and what treatments you have encountered? I'd like to know what to expect. Thanks

What is B-PPL? I have low WBC since 2008 and Kaiser in California doesn’t know why.

Thanks!

Hello @lmclark – 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.

B-PPL is a type of Leukemia.

As you have had this condition for several years, have you tried a different service provider to get answers for you?

Hi, @Imclark, B-PPL is a very rare leukemia. You mentioned having a low White blood count since 2008. The symptoms of this disease would show a very high amount of White blood cells. So it would be contrary to having this disease.

Has the possibility of having B-PPL come up with conversations with a hematologist?
Do you have any other symptoms? How low is your WBC~critically low or just at the bottom end of the normal range?

Causes for low white counts can be attributed to a variety of reasons from latent viruses, underlying infections, medications, stress, autoimmune diseases, blood cancers, etc.
Are your other CBC (complete blood count) numbers normal?
These numbers all work together to paint a picture of what’s happening inside your body. It’s difficult to see the whole picture by just looking at your WBC.
As my fellow mentor @grandpabob mentioned, have you tried another provider?
Let’s hope we can find some answers for you.

Hi Phyllis, I'm sorry I found your post here so late (and sorry that you have been diagnosed B-PLL). Welcome to this forum. I'm one of the B-PLL diagnosed. In answer to your questions
1. re affording Imbruvica, I have insurance so I ask my specialty pharmacy for what coupons they have, and I am aware that if you are on medicare it might work different re availability of coupons and how much out of pocket you have to be before the rest is paid by medicare. Imbruvica was really good for me, I was in the 400K WBC range then it went down slowly but surely.
2. re on meds for life - yes, that's what I was told, and no one really knows what to do with B-PLL except to treat it like it is a high risk CLL (Chronic lymphocytic leukemia) and suggest stem cell transplant (which I chose not to do because the meds are working so well) . You can research what treatments the CLL folks get and likely you'll be recommended something similar by your doctor. I was told I'd be on imbruvica the rest of my life, then got hospitalized with sepsis and was switched to venetoclax 'for the rest of my life'. I also finished rituximab. I'm basically medicating until venetoclax fails, and taking a pill every day is not so bad, but there is constant fatigue. I'd love to be able to stop medicating but since doctors view B-PLL as an aggressive high risk cancer, they are afraid to stop medications and at least my doctor believes it will mount a war and mutate against me if we let up on meds.
3. re blood tests, mine are every other month because my numbers are more stable and near normal range.
4. you didn't ask, but I'll let you know that many blood cancer patients still need to be careful and distance and wear masks if they can't distance even if vaccinated for covid as we still need protection from bacteria, fungi, and the various viruses.

Thanks for your response...really appreciate the info. My WBC count is going down monthly...from 357K in Dec 2020 to 42K this month June 2021. My imbruvica is 450 mg 1x daily and I agree taking one pills is very doable. I don't have symptoms, fortunately other than fatigue. I have some serious back pain that limits my activity level. Doing PT now...can't get an injection due to Imbruvica. Medicare does not cover medications, but I have a Part D supplement. Even with that, it would cost over $2000 monthl. Fortunately, the clinic I go to got a grant for the first 6 months and now J& J is supplying for free until end of this year. I will ask my pharmacy about coupons, though. Thanks again and may we all fare well.

Hi Phyllis, nice to know you're getting good results from imbruvica. If ever you need to switch medicines, you can inquire with your doctor about Venetoclax. I sent you a private message.

Re Smth123456
Hi everyone. I'm posting on this lonely group because I can't find my friend Smith123456. If you're still online, I wish you successful treatment. Thank you for sharing your knowledge on medicare, on upcoming drugs and on possible treatments for B-PLL

It’s so hard when we lose track of someone, isn’t it? When was the last time you had a conversation with your friend. I’ve looked through past conversations and I don’t see any @smith123456. Are you certain that is the @name?

Smith123456 was in remission and seeking treatment again. He was on another cancer forum for chronic leukemia over 3 years and that forum is private and posts aren't searchable for browsers so discussions are not found (just the forum, not the posts) He had B-PLL and stopped posting anywhere 6 months ago after needing to start treatment again. We had similar treatment programs, and he shared upcoming drug possibilities when he learned of new drug trials. There's so few of us with B-PLL that sometimes we really don't fit in to the other forums, but the other forums have more people, more possibilities of treatments to consider for our situation, more discussions on dealing with cancer and the drugs we are on. He made me feel welcome and always said that our B-PLL is treated like a more aggressive chronic leukemia so when we look for the next drugs or treatment we can look to that other group of cancer patients for ideas, and thus fit in. There's no specialists for our diagnosis either. He was very active on the other forum helping people with chronic leukemia to understand medicare and how coverage works to cover costs with the expensive cancer medications we are on and sharing about possible treatments . I do hope Smith123456 is still out there and successfully treating again toward another remission.