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Neutropenia and thrombocytopenia 100+ days after autologous Stem cell
Hi
I was diagnosed in Oct 24 with AITL (angioimmunoblastic T cell lymphoma) and had 6 rounds of R CHOP, got a complete response and then had a autologous stem cell transplant in March 25. My blood levels started lifting and all looked good 40-50 days out. Bone marrow biopsy showed everything looked in order, and PET scan showed no sign of cancer. BUT, then for strange reason my neutrophils keep disappearing and unless I inject with GCSF 2x week, they get to be around 0.2 (or less), AND platelets are sitting around 50-70. Drs are thinking it is autoimmune given bone marrow biopsy looks good and no sign of cancer. My RBC are in normal range. I had Rituximab and IVIG during my chemo to try and bring platelets/neutrophils up and it did not respond to it. Dr not keen to do it again.
Has anyone else had this? It is a bit unusual. They are watching it, and waiting. is there any danger with staying on GCSF injections long long term?
Thanks
Liz
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Hi, Liz. I too had an autologous stem cell transplant for AITL in Feb. I had CHOP prior to the conditioning chemo in preparation for the transplant. I have not experienced what you are currently going through, but wonder whether a platelet infusion would be helpful at this point. Please let me know how you're doing. It is rare to find another person on this site who was diagnosed with AITL.
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6 ReactionsWhere I live the rule is platelet transfusions when you go under 20. I have had lots in the past when I was going through chemo. They don’t seem too bothered at 50.
I feel great after my stem cell and if it wasn’t for blood tests I wouldn’t know there was a problem. Lots to be grateful for …
@coloradoed do they say you are in remission?
They think I am.
Although I sometime do think that a hallmark of this cancer is thrombocytopenia and neutropenia. Hmmm???
🤷♀️
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1 ReactionI am 9 months out from my stem cell transplant & have not been told I am in remission at this point. I have a PET scan on Dec 3rd.
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2 ReactionsHi,
Diagnosed with AITL in August 2025.
In remission after 3 rounds of BV-CHP.
One more round of chemo then Auto stem cell transplant
I am wondering how you are feeling after your transplant?
I see your PET was on the 3rd. I hope you are in remission!
@thenester
Hi, I have just done a big post update for @thorsmom1959 who has just been diagnosed with AITL.
I feel great - a few issues still - you can read more on my recent reply to the post.
I see that @kthompson also was posting about AITL.
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1 Reaction@bizzylizzy Thank you.
I just read it. Very helpful for me.
I agree so much with you about social media and certain movies/shows.
I am struggling quite a bit with anxiety over everything. Hard to focus on just today and what is in front of me.
The ASCT has me spinning.
Good morning, @thenester, I’d like to officially welcome you to Mayo Clinic Connect. You can already see this is great place to sit and chat with other people who have walked the same path you’re about to take.
@bizzylizzy has shared their positive experience with having the similar diagnosis along with having an ASCT (stem cell transplant using your own cells).
There are several others members about to embark on this same journey, @treehouse5437, for one, will be having an ASCT for multiple myeloma in a few months. I posted this reply to them a few days ago. There’s a link in this post for another conversation started by @jstpeachy who had an ASCT several years ago and is doing well. So I hope you’ll through these and feel some encouragement!
https://connect.mayoclinic.org/comment/1450804/
~~~
https://connect.mayoclinic.org/discussion/my-autologous-stem-cell-transplant-journey-mayo-phoenix/
I know having a stem cell transplant can be daunting. But you will be guided carefully with your SCT team wherever you’re having this procedure done.
Is this transplant center near your homehome or do you need to relocate quite far from home for the 6 or so weeks?
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2 Reactions@loribmt
Thank you, Lori. I feel Mayo connect has been the best place for me to read others stories and find answers. Dr. Google is the worst and I fell down that rabbit hole one to many times.
I am getting my ASCT at Mayo Phoenix, AZ. And after my hospital stay I will be released to my Dr. in Tucson (where I live) I am 6 minutes away from the cancer center and 15 minutes away from the hospital.
I know I will be in good hands at Mayo and my Dr here in Tucson is brilliant. He has a wonderful relationship with my Dr at Mayo.
This is all still surreal.
Jennifer
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3 Reactions@thenester Hi Jennifer! Fantastic that you’re having your ASCT at Mayo-Phoenix. You are in the best possible care!
I hope you’re able to glean useful knowledge from the link I gave you to @jstpeachey’s post! She was at Mayo-Phoenix!
We share an interesting coincidental tidbit… my local oncologist had been a Fellow years ago, with my transplant doctor at Mayo Rochester. They remained close friends. That made my transition to hometown oncology so slick! Wow, and lucky you living so nearby to your medical team! This is all falling into place!
Wishing you a lovely holiday and then onto a happy, HEALTHY New Year! Keep us posted, ok?