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Here is a link to Cheryl's thread - she had a haplo for CML blast crises with an interesting protocol. I'm not sure if they are still using the modified T-cell regimen she had (if my memory serves me, that was the "interesting" part of her protocol) but she's doing well and posts on here from time to time. Thought you might like to take a look.
http://community.lls.org/thread/8995
Best wishes.
- WBF
Hi Dustin~
You do seem to be in a pretty unique situation, having had a cord blood transplant followed by a haplo.
Wow.
The cord blood graft didn't "take"? I guess the docs had to act pretty quickly!
I read some of your comments on other threads & it seems as if the GVHD & other side effects you are currently experiencing are pretty bad. I sincerely hope that you will soon see sure & steady symptom improvement.
I'm sorry that you haven't yet heard from other people with haplo experience. I'll briefly share our experience but I'm not sure how relevant it will be, given your age & all the treatment you must have received prior to your haplo.
My husband was diagnosed with an unusual T-cell lymphoma in 2007. Two months after diagnosis, he had a haploidentical transplant at Hopkins. One of our daughters was his donor. Pretty standard recovery. After 6 months he was off all immunosuppressants. Minimal GVHD; just very sensitive skin (nothing like you are going through) & minor gut issues (loose stools). No evidence of disease and back to work & play for four years until a recurrence. Now on weekly chemo.
I hope you'll soon hear from other haplo recipients.
Sending prayers & positive thoughts your way...
Lynne
Hi Dustin81,
I have had a haplo BMT. I had it for AML, and I had it in October 201114 after achieving remission via induction chemo. My mother was my donor. Unfortunately, I relapsed after 6 months. I never exhibited any signs of GVHD.
I'm a bit surprised to hear you currently have GVHD and they are proceeding with a transplant anyway. But I've been surprised by a lot of things the docs decide to do...
To treat my relapse, I am transferring to another center (going from Hopkins to Seattle) where they plan to do a second BMT from an unrelated donor.
If you have any questions or want to chat further re: experiences, just let me know!
Best wishes,
MJax
Dustin
I had my Haplo in January of 2011 at Jurvinski Hospital in Hamilton Ontario - a trial protocol that involved manipulating the tcells from myself and my sister under a light therapy to control the gvhd - I had a tcell depleted transplant and then on day +35 they gave me the infusion of manipulated tcells...I have had no gvhd to speak of although I did have 7 months of mouth sores that were tested as hsv (cold sores) and were treated with Valtrex successfully after months of trying other drugs...I am in remission and have been since my transplant - this particular trial has been put on hold - however, my center is now doing another version of Haplo with methotrexate after getting the cells to help with the gvhd...not sure how many they have done this way - however I have been told that many centers are doing their own version of Haplos - my counts run on the low side of normal but my Drs dont seem too worried about it - my last pcr test show no evidence of the CML - I did have an IVIG infusion this week to try and boost my immunity but this is the first of this for me as well...I have been on no immune suppressents whatsoever and no steroids...and I have been off all antifungals, antivirals and all other meds since my 1year anniversary
Cheryl
