DLI after allo transplant? Maintenance chemo after transplant?

Posted by dwolden @dwolden, Feb 10 11:15am

My husband is close to six months post unrelated donor allogenic stem cell transplant to treat high risk MDS.
His chimerism is less than. 💯 and his blood counts are all low (platelets especially). His transplant team at Mayo Rochester is doing a DLI (donor lymphocyte infusion) to “boost” the new immune system and hopefully then improve his blood counts and complete the transition to donor DNA.
Does anyone have experience with DLI they could share here?
Further his transplant doc wants him to have “maintenance chemo” of low dose decitibine as soon as his counts allow it. Due to his high risk MDS. Any experience with that?
Looking for first hand experience but ready to follow the plan.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

katgob | @katgob | Feb 10 1:20pm

dwolden
You know Lori or another will post. So many variables occur and i know i have read about all this ups and downs. Mayo has the answer. I expect others will post that have 1st hand experience.
I hope he is doing better overall!!!

Lori, Volunteer Mentor | @loribmt | Feb 10 2:10pm

Hi @dwolden. While your waiting for other members to reply to your questions, I’m going to tag @taitorz who had MDS and received a donor lymphocyte infusion ( DLI ) after his SCT when his numbers were greatly fluctuating. Hopefully he’ll be able to share his experience with you!

Here are two of his replies:
https://connect.mayoclinic.org/comment/860797/
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https://connect.mayoclinic.org/comment/861226/
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(From the discussion:
I have been diagnosed and under treatment for MDS https://connect.mayoclinic.org/discussion/i-have-been-diagnosed-and-under-treatment-for-mds-whag-are-the/

Wishing David and his new immune system a nice nudge to get a little more action going!

Colleen Young, Connect Director | @colleenyoung | Feb 21 2:17pm

@dwolden, I wanted to check in. How is David doing? Any update?

dwolden | @dwolden | Feb 22 8:30am

The DLI went fine on Wednesday. We had two days of follow up visits outpatient.
David says he doesn’t feel any different.
We have been repeatedly instructed about what to watch for in terms of symptoms of GVHD.
We are back at home but must return to Mayo for bloodwork in two weeks and again in four weeks, hoping for an improvement in the T cell chimerism.
Sadly I now feel completely over my head in terms of understanding the care plan. I thought I was keeping up but I just don’t get it now.

Lori, Volunteer Mentor | @loribmt | Feb 22 12:24pm

In reply to @dwolden "The DLI went fine on Wednesday. We had two days of follow up visits outpatient. David..." + (show)

Hi Dorothy, what can I help you with? What has changed in the care plan?

katgob | @katgob | Feb 22 6:15pm

dwolden,

I am sorry to hear David does not feel much better. Seems like we need ways to help patients like David to walk through this tough time. Not feel good and no answers to help. Was there a time given that a body might be helped by the new cells? To me it seems the caregiver has it tougher. How to help those we love and make their journey better. Let Lori and Colleen know how they might help. You are at Mayo, so help is close by.
My hope is each day will be a little better and that chimerism test is showing the cells have worked. BMT transplants are not easy. Sending positive vibes.

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