Hi @kthomson, I'm tagging @thorsmom1959 to make sure that they saw your post about your dauther's recent diagnosis with angioimmunoblastic T-cell lymphoma. I can imagine you are both terrified. What treatment had been recommended for her? When does she start?

@kthomson
I was diagnosed with AITL in August of this year.
I am on round 5 of 6 BV-CHP and will have a autologous stem cell transplant in March.
PET shows I am in remission after rounds 3.

I am wondering how your daughter is doing? I know this is a very scary, rare disease and it is hard to find others who have AITL.
Thank you for any advice or suggestions.
Jennifer

@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.