Peripheral T Cell Lymphoma NOS

Hi @tcellymphoma. While you’re waiting for others with Peripheral T Cell Lymphoma NOS to reply, I just wanted to welcome you to Mayo Clinic Connect. I’m sure both you and your mom are rattled with this new diagnosis and concerned about the chemotherapy, side effects and how well it will work for her.

After looking through our Connect forum, one gentleman came to mind that might be helpful for you to chat with about his experience with PTCL. @capthondo eventually went on to receive a stem cell transplant but he did undergo chemotherapy treatments initially…this is the comment that talks about his CHOP therapy.
https://connect.mayoclinic.org/comment/703639/
Do you know the type of therapy your mom will be having?

Hi Lori
It’s been a long time. A follow up on my PTCL journey since Mayo. Unfortunately my PTCL relapsed after 100 days in Nov 2022. I searched for various clinical trials but could not qualify for any since I didn’t have enough active disease. I was in semi remission for 2 years with pet scans every 3 months. In Nov 2024 I began a Romidepsin/Duvelisib therapy and was in remission after 3 monthly cycles. In March of 2025 I underwent a Allogenic transplant at Massachusetts General Hospital in Boston. At the end of 100 days I was declared cancer free. I feel great and have no side effects.

Hi @capthondo It’s great to hear from you! Can’t believe it’s been a couple of years…just doesn’t seem that long ago! I’m sorry to learn about the relapse. That’s a word no one wants hear. But I’m so happy you’ve been given a 2nd chance at life with an allo bone marrow transplant! Congratulations. You’ve gotten past the first critical 100 days and now well into your recovery! It sounds like everything is going along smoothly and you’re resuming life on your terms. ☺️
Are you off most of your meds now?

@loribmt Still on most meds right now. Just started a reduced dosage of Tacrolimus. Thanks for the reply!
Randy

Good morning, Randy. Baby steps ahead as you wean off the tacro. ☺️ That’s a big moment in the BMT journey. Always feels reassuring when you see forward progress with your recovery. Tapering tacro is the first step, then gradually the other meds won’t be far behind after you have your vaccinations.
Don’t be a stranger here! I’d love to hear more about how you’re doing along the way. A few years ago I posted this discussion after my transplant. Feel free to pop in if you’d like to share your life after transplant picture!
Snapshots of Hope: Life after transplant
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Was your donor from the US or Europe?

My donor was a 38 year old German male 10/10 match.

@loribmt
https://acrobat.adobe.com/id/urn:aaid:sc:US:2c935672-7fe6-44bf-8c40-97fc57f1d1fe
Hope you can open this. It’s an article written about my cancer journey in conjunction with Dr Salvia Jain (Petal consortium) and Mass General Hospital.

@tcelllymphoma, how is your mom doing on chemotherapy? How are you doing?

@capthondo , i read article about your journey. How are you doing now?? May i know what was your cancer marker status?

I am Asad 47M from Bangladesh. On Oct 2025, diagnosed with Peripheral T‑cell lymphoma, NOS with aberrant expression of CD20. My cancer markers as follows:
CD20, CD3 & CD5 Positive. CD30 & ALK Negative.
From Oct 2025 to Feb 2026 got 6 cycles of R+CHEOP. After 4th cycle did PET scan on Jan-05-2026 which shows Cancer-free. I continued remaining 2 cycles which ends on Feb-12-2026. But by mid of March-2026 Cancer relapsed. As the cancer relapsed so quickly my hematologist suggest to do a repeat biopsy & Immunohistochemistry. Result shows same as before. After that i got 2 cycles (ESHAP) of salvage chemo on Apr & May but no any improvement. Then got 2 cycles (R-ICE) salvage chemo on June & July but still no improvement. During R-ICE my WBC & Platelet count went down to almost zero. Had to hospitalized and need blood/platelet infusion several times. My body lost its capacity to produce these cells due to impact of such strong chemotherapy. Now my doctor is suggesting another type of salvage chemo named GDP. But i dont want to take any more chemo!!
My doctor also dont know about the new drug (romipdesin, duvelisib). These are also not available in my country. I am really in dilemma what to do now!!

Welcome to Mayo Connect @aasadullah
You’re in a rough position of trying to figure out your next step with Peripheral T‑cell lymphoma. I can certainly appreciate your frustration and disappointment with the relapse after months of treatment. Chemo can have a serious impact on not only cancer cells but the body itself, including the bone marrow which is responsible for blood production. But it isn’t always irreversible and given time the blood cell production may return. So it isn’t unusual for having transfusions to help compensate in the meantime.

Given that your PTCL has relapsed your doctor is now suggesting another form of chemotherapy called GDP (Gemcitabine, Dexamethasone, and Cisplatin)-(sometimes with the inclusion of Bendamustine). From my understanding it is a recognized protocol for relapsed PTCL and is frequently followed up with a bone marrow transplant.

Two articles of note regarding refractory (relapsed) PTCL would be this dated, but still relevant, article from
~Ash Publications:
https://ashpublications.org/blood/article/122/21/4345/13519/Gemcitabine-Dexamethasone-and-Cisplatin-GDP-As
~ Taylor and Francis online:
https://www.tandfonline.com/doi/full/10.1080/10428194.2025.2545927
You mentioned the medications romipdesin, duvelisib. These are newer treatments that showed encouraging results in clinical trials.
There is an article on these meds if you’re interested: From ASH (American Society of Hematologists)
https://ashpublications.org/bloodadvances/article/9/16/4286/537797/Real-world-evidence-of-duvelisib-and-romidepsin-in
It’s doubly frustrating when there is limited treatments or drug availability for you. Would you have the option to travel outside of your country to seek treatment?