Angioimmuneoblastic T-Cell Lymphoma???

@thenester When I had my allogeneic bone marrow transplant (using donor cells) I didn’t have anyone that I knew who’d gone through a transplant. My transplant team was amazing with sharing information and encouragement. But they didn’t have first hand knowledge. One day I actually met and spoke with 2 people who’d gone through the process when I was about 1.5 months post transplant…that was a mental boost like no other! They gave me hope. So that’s why I’m here, along with others to be a lifeline.

You’ll be having an autologous transplant (ASCT) using your own cells. I’d just written a reply a few days ago to another member who will be having an ASCT. You might be interested in reading that reply. Here is the link: https://connect.mayoclinic.org/comment/1450804/

Also, since you’re interested in speaking with other members who have had an ASCT, I’ve taken the liberty of doing a quick search for you. Feel free to read through the discussions and jump in anywhere. It’s helpful to tag a member that you want to reply to by including their full @name. Or simply hitting the blue reply button which will open a box in that comment so the person you’re writing to will be notified. Here are the results of the search! You can see you’re not alone in having this procedure: https://connect.mayoclinic.org/search/

Do you have a timeline for your transplant?

@kthomson
I am sorry to hear of your daughter' AITL diagnosis & I apologize for my delay in responding. As I stated in another post, there are not too many contributors who have an AITL diagnosis since it is so rare. I'll see if I can answer most of your questions & welcome any others you may have. I was diagnosed with AITL in early Aug 2024 & went through 6 rounds of CHOP chemo which was interrupted after the first round after I contracted an infection. That treatment ended at the end of Dec 2024 & I was deemed cancer free at that point. This was followed by an autologous stem cell transplant on Feb 3 2025 after receiving the "conditioning" BEAM chemo for 5 days prior to the transplant. I wasc in the hospital for 19 days. Once released, the patient will need a caretaker available 24x7 since you are not allowed out at all. My husband was my caretaker. The overall experience was challenging. The initial fatigue and lack of energy is profound, but I did experience improvement in both as time went by. I am now walking about 3.5 miles a day which is a wonderful feeling & my hair started growing back in May although it still has a long way to go. I live in Colorado & had my stem cell transplant at PSL via Colorado Blood Cancer Institute. Please feel free to contact me with any questions or concerns and let me know how your daughter is doing.

@thenester my husband was my caretaker. We have animals , 2 dogs. I kept them out of my room and didn’t allow them
To lick.
I did the simple cooking as I wanted to move around. Had a sleep every afternoon. Started 5 mins of gentle stretching yoga. Added a couple of minutes each day. Walked 200metres and the back. Added a bit further each day. Am now walking 4 kms easy including a few hills. Can now swim 40mins indoor. 274 days since my transplant.
We had deep cleaned the house before I had the transplant.
All in all, a good outcome 🙂
Best of luck. Know that it will finish. Looking back it went quickly for me and I have forgotten a lot of the tough days. Merciful memory.
Cheers
Liz

@bizzylizzy
Thank You for this info, Liz.
I am so happy you are doing well.
I'm very nervous about the ASCT.
I'm such an active person even through all of my chemo. It's going to be hard to stay still...but my body will let me know that is needed. And my dogs not sleeping with me is going to be hard. They are my comfort and have been a huge part of getting through chemo etc.
Happy holidays!
Jennifer

Hi @shirley1922, have you had a chance to talk to your doctor since seeing the note about "suspicious for lymphoma?" What did you learn?

@loribmt @bizzylizzy @coloradored
Hi,
I want to say thank you to the three of you for sharing your experience and being helpful.
I am being admitted to the hospital on February 10th for my ASCT if my PET shows I am in remission- January 21st and I pass the evaluation (I will on both if these 🙏)
As I begin packing for my 7 week journey I can't help but feel extremely emotional and quite scared. I'm wondering if you have any words of advice?
It has been amazing to be able to chat with others who know exactly what the experience is...Even though I hate why we have to go through this.
Thank you in advance.
Jennifer

Hello, Jennifer. It's wonderful to hear from you again. Yes, the transplant process is scary indeed, but it helped me to just keep moving forward knowing this was my chance to survive this horrible & very rare cancer. Know that you are strong, you can do this & your transplant team is there to support you & watch over you. I did ask everyone I knew to pray for me & keep praying 🙏 for my recovery. Please message me if you want to talk prior to your hospital stay or if you're more comfortable with email. I am sending prayers & blessings to you. Best, Jamie

@thenester
So this is my advice…
It is such good news that you get this second go at life. Fantastic.
It will feel hard and as if it isn’t going to end, but you know what … morning, afternoon, evening, night … it will pass. Day 1, 2, 3 … it will soon be over and you’ll be enjoying good health.
You’ll look back and the really tough days will be forgotten.
Liz