B-PLL Lymphoma

Hi I have B-PLL lymphoma and because it is very similar to CLL I’m going to start Ibrutinib. Just wondering if anyone with lymphoma has been prescribed this drug?

[Hidden]

I have b-pll leukemia. I take ibrutinib. B-pll stands for b prolymphocytic leukemia. I can find no reference to a b-pll lymphoma- i did find a listing that says its hard to distinguish from mantle cell lymphoma

[SwiftT in reply to Hidden]

I was diagnosed with b pll in July and finished my chemo my question for you is did you have a bone marrow transplant? Before starting the ibrutinib. I’m not sure I want to go through with the transplant this is why I’m asking.

[MsLockYourPosts Passed Volunteer in reply to SwiftT]

Is your doctor recommending a transplant?

[SwiftT in reply to MsLockYourPosts]

My doctor won’t make up his mind either way which leaves me in decision mode. Everything I’ve read , that I can find, say transplant maybe necessary but he keeps bringing up this drug and I’m wondering if I should try this first

[MsLockYourPosts Passed Volunteer in reply to SwiftT]

Are you able to get a second opinion? There is a big difference between taking Ibrutinib and going for a transplant. In your shoes I would want more than my doctor is leaving it up to me. There are others here with B-Pll who can give you input about how their doctors are dealing with it, and could perhaps recommend a specialist who is familiar with B-PLL.

[SwiftT in reply to MsLockYourPosts]

Thank you I meet with him on Friday to discuss and get all the information out. It seems they like to play this game where they don’t want to give up all the information then it comes out and get mad because I’m questioning it. Now questioning the procedure and the doctor. I will look for the b pll group I thought I was in that when I messaged you apologizes.

[MsLockYourPosts Passed Volunteer in reply to SwiftT]

No apologies needed! As Brian Koffman (CLL Society) says, We're all in this together!

[MsLockYourPosts Passed Volunteer in reply to MsLockYourPosts]

If you don't trust your doctor, look for someone else. I should have, when I was first diagnosed.

[SwiftT in reply to MsLockYourPosts]

That is my intention on using the drug in place of a transplant

[Hidden in reply to SwiftT]

everything you read on b-pll are statistics and therapies BEFORE novel drugs existed. Since most b-pll have lousy markers-novel drugs best shot. So far since Jan 2019 the imbruvica has brought my lymphocyte from 450,000 to 70,000. We get treated like high risk cll. I have no intention of getting transplant without trying these new novel drugs. I will be adding venxlexta within a month or so. .

also-most of my research says b-pll have p17 deletion or tp53 abnormal or combo of both. usually chemo does not work on that.

Wait for Car-t therapy

what country are you in.

i misunderstood your post. I HAVE NOT HAD A TRANSPLANT.

[SwiftT in reply to Hidden]

I have not had a transplant and am leaning towards not having one. I’ve completed 6 rounds of chemotherapy and immunotherapy now looking to further my progress

[Hidden in reply to SwiftT]

Did you have a bone marrow biopsy? What are your markers? most b-pll have p17 deletion or tp53 abnormal or combination of both. I have both. Usually chemo does not work or is very short remission with these markers.

[Hidden in reply to Hidden]

Hi before i started the ibrutinib i was also told by oncologist to start researching bone marrow transplant. Now that i am on this drug and i see how amazingly well it is working, i will definitely wait to even consider the transplant.

[SwiftT in reply to Hidden]

Thank you that’s what I was looking for. I’m uneasy about having a bone marrow transplant and I want to try the drug first if possible. But I wasn’t sure someone with B cell pll could use it

[SwiftT in reply to Hidden]

How long have you been on ibrutinib

[Hidden in reply to SwiftT]

I started 2 wks ago. My swollen lymph nodes in my neck went down immediately. I was having a ton of stomach issues that are now all gone. My night sweats are also gone. My energy is back and I’m feeling great for the first time in 6 months. I will go for blood tests on Friday. So happy my insurance covered it or might have had to go a different route

[SwiftT in reply to Hidden]

Glad to hear. So happy it’s working for you

[Jm954 Administrator]

Ibrutinib is regarded as a good treatment for B-PLL

Good luck with it!

Jackie

[Devonwife]

Hi mrcandi

My husband was diagnosed with B-PLL a week ago and starts Ibrutinib on Monday. Will let you know how it goes - perhaps we can share info

[Hidden in reply to Devonwife]

How is the Ibrutinib going? I have been feeling great on it and besides a bit of a headache no side effects

[Devonwife in reply to Hidden]

Glad all is going well for you. My husband has been on it for 3 weeks and has suffered virtually no side effects except a bit of bone pain. He is far less fatigued and feeling pretty good! We're off to see his doctor today and get his views on progress so far. Will let you know.

Enjoy the upcoming holiday!

[Hidden]

Yes happy holidays!