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?