Anaplastic Large Cell Lymphoma ALK Positive

Susanraetulsa

Anyone on the boards have this besides me? 

po18guy

Close but no cigar

Sorry to hear this. I had PTCL-NOS and later, Angioimmunoblastic T-Cell Lymphoma. ALCL ALK+ is unique among T-Cell Lymphomas in that it normally responds well to CHOP, an older B-Cell Lymphoma regimen. How are you doing? In treatment or past it? 

maryscancer

Hi my wife has this stage 3 and just finished chop 6 rounds and before last round came back so working on next steps. Started 7 months ago and within a week couldn't walk as the tumor was on her sciatica and has been bedridden for months and finally walking and rebuilding after 7 months. Pain was unbreakable with the highest meds in hospital for a month at JHH and finally when chemo the then 3 tumors shrunk the pain subsided. Now she has nerve damage and bone eaten from tumors but Hopkins is saying Chemo, radiation and auto stem cell treatment don't work. Seems wrong even though we met with Dr Ambinder who's the director of the lymphoma with almost 50 years experience. Lots of confusion and hope you had better results. Are you Cancer free and with what treatment and what issues and where in the body. Just curious and appreciate your support. God bless you. Tom [Edited by CSN Support Team]

po18guy

We have not heard from Susan Rae since that first post. I did not have ALCL, but rather both PTCL and AITL. T-Cell Lymphomas are extremely different (and difficult to diagnose) even within their sub-groups. ALCL ALK+ often has a very good outcome. A caution: If it is not behaving as expected, there 'may' be a pathological error in diagnosis. I was first told that I did not have cancer. I know of four other cases where patients were misdiagnosed with B-Cell Lymphomas and it was too late to save them by the time the error was discovered. I would strongly suggest that your wifes pathology be re-done if there is any doubt at all, since mistakes are made, especially with the difficult to diagnose T-Cell Lymphomas.

I have been lymphoma free since 2015 at the end of 7 years of chemotherapy, followed by a stem cell transplant. Even then, the transplant took 2 full years to eradicate the marrow cancer (MDS) I had at the same time. Now, I am combating transplant rejection issues (GvHD), but otherwise doing as well as might be expected.

maryscancer

Thanks for sharing and sorry for your journey as well. Interesting about testing as they actually did 3 different biopsies and took almost 2 weeks while in Hopkins and each day was a rollercoaster until the stains finally grew to diagnose. She's due for another next week for the latest growth to see if it's the same or not. Also concerned for the desire to do donor stem cell transplant next over radiation or auto stem or something else and seems very high risk as she already has an autoimmune issue and the basics I have found have lots of challenges. Also considering alternatives or trials but not sure yet what's available. Thanks

po18guy

https://csn.cancer.org/discussion/comment/1714925#Comment_1714925

I will note here that at my second relapse, it likewise required two-weeks or more to get a pathology report that was consistent with relapse. And the pathology team already new what to look for! There was much discussion and argumentation. When that report finally arrived, it was not the same lymphoma, but a "relapse" of a different T-Cell Lymphoma - which I had never been diagnosed with in the first place. Subsequent treatment response revealed that I apparently had both types: PTCL-NOS, as well as Angioimmunoblastic T-Cell Lymphoma. And a marrow cancer (MDS) was tossed in for good measure.

Pathology is absolutely crucial. It is as much an art as it is science, so in a pathologist, one is looking for someone who is a master of both art and science.

maryscancer

Thanks and not sure this is relevant after 3 biopsy it's in question but more it's not working. We met with lymphoma THE expert at JHH, supposedly, with nearly 50 years experience who has published 390 articles on cancer and we're now waiting for them to tell us if it was clear in Feb or not as our other oncologist said it was but now it's back, or, it's always been there and just getting smaller. It's measurably smaller now and if it is then we discuss what next options are, or just wait, such as more chemo or meds but not planning on donor stems due to limited results and high risk. Something I'm learning is each cancer is different and even dietary and other ways to manage are also different so I was looking for someone with this specific cancer for advice and appreciate your feedback but it's not the same as this and appreciate your diagnosis being different. Thanks again for the feedback on your case and experience. Anyone else here have any feedback on ALK positive ALCL? Thanks

po18guy

A possible source of connection: Women who have had breast implants are at increased risk of developing ALCL. They may be on breast cancer forums, as it occurs in the affected tissue.

berland

alcl alk negative here. Also have bone marrow involvement which apparently is rare.

Anyone looking for support let me know

po18guy

https://csn.cancer.org/discussion/comment/1715134#Comment_1715134

If I might ask, where are you being treated?

berland

https://csn.cancer.org/discussion/comment/1715148#Comment_1715148

UPenn. Dr Stefan Barta is fantastic. He has the most detailed notes I have seen any doctor put in my chart and has been on top of every stepof care

po18guy

https://csn.cancer.org/discussion/comment/1715157#Comment_1715157

Excellent. We are a very tiny group in a small corner of the cancer world.

berland

https://csn.cancer.org/discussion/comment/1715158#Comment_1715158

I see in earlier comments you had stem cell transplant…they are already talking about that for me once I get through 6 rounds of BVCHP. I'm glad you made it through, sorry more and more issues pop up like whack a mole

po18guy

Honestly, I had expected cancer, due to family history. Just not THAT much over than=t many years and with that many treatments! However, I am delighted to be anywhere at this point. I know of a man in Wyoming who was treated for ALCL ALK- and last I heard, was doing well. We ran out of lymphoma drugs, so ultimately a transplant was the only option. I will be in treatment for GvHD for the duration, but there is on-going research in that regard as well.

Sounds like your version is CD30 +, thus the Adcetris. It may come at a cost in neuropathy, but has a very good history against CD30+ malignancies. A blessing actually, since it sounds like the Vincristine has been eliminated from your regimen. I had marrow involvement, but it was AITL-like PTCL. I was comforted to hear that it is reasonably easy to eradicate in the marrow.

I cannot imagine you being in better hands, even though we in the States have the option of several truly excellent T-Cell hematologists. I was blessed to have been connected with one of them at the start of my journey.