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

Hi Jennifer! @thenester! I’m so glad you’ve been able to read through some of the links I posted for you. It really is helpful to talk with others who have ‘walked the walk’! Words of advice…first and foremost…
~Listen and trust your transplant team. They want success as much as you do and go the extra mile to make sure you’re comfortable and well taken care of.
~There are no medals or trophies for being stoic! If you need meds for nausea or anything, tell your nurses! They have your back!
~Listen to your body! That means rest, nap, deny visitors, ignore emails, texts or phone calls if you’re tire! It’s ok to take control of your life. You can say NO! LOL

Pack your phone, ipad, chargers, AND a small extension cord! You’ll thank me for that! LOL.
Pack Jammies, comfy clothing, yoga pants. A hoodie is nice, T-shirts with a V-neck for port access. I tossed in my favorite slippers with firm souls.
Take your favorite pillow and a couple pillow cases. A little throw blankie comes in handy. Though most hospital rooms have heated blankets they can bring for you or you can go to the heater to get one.

Eat what you can, drink plenty of water. For me, room temp water went down really much easier than icy water.

I made it a point to shower (or ‘spit-bath’ 😅) and get dressed every day. The hospital gowns were demoralizing and made me feel like a patient!

For me, walking was key to recovery. Even when I didn’t feel like it, I pushed to walk as far as possible, though some early days it was an effort to walk across the room to the bathroom. While receiving chemo, I’d actually walk 4 miles daily pushing my IV pole! ☺️ I had a squeaky wheel which ended up with my nurses finding me a brand new IV cart!! Whoo whoo Hahaha that was awesome. They even put a photo of Christopher Walken on my IV pole because I’d tell them I was out Walkin’ with Christopher. Here’s a picture! LOL.

I know this feels daunting but it will all fall into place. Do you have any specific questions regarding procedure, what to bring, what to expect??

@coloradored Hi Jamie,
Thank you for your response. I am in Phoenix the last 2 days for evaluation, testing and bone marrow biopsy. Everything looks great to move forward. Just waiting on the bone marrow biopsy results. Next week I will start my injections and collection. Admittance to the hospital is scheduled for Feb 10.
I have a lot of friends and family praying for me. It is such a wonderful feeling knowing the prayer warriors have my back.

I appreciate your support and willingness to answer questions. I will be back to give an update.
Jennifer ♡