My wife is 12 days away from her second stem cell transplant. In 2020 after being diagnosed with Multiple Myeloma she went through an autologous transplant with chemo maintenance over four years. Then on a routine visit with her doctor we were informed the MM cancer was in Complete Remission but that she had now had a treatment related cancer, MDS.
Her early treatment had included high dose melephan which caused red blood cell blast and a mutated tp53 gene.
Her conditioning over the last 4 months was to clear both blasts and the tp53 mutation. The good news is that the blasts are 0, but the tp53 gene was reduced from 19% to 5% to 3.9% … the most recent bone marrow biopsy showed little movement after 4 cycles of chemo to 3.25%. Disappointing news to both my wife and her doctor, and hence my search for additional information.
The doctors concern based on medical reports and clinical studies is: a patient with MDS and a mutated tp53 has a high risk for a sooner relapse. Studies report that without a tp53, relapse can occur with 4 to 14 months … with tp53 relapse can happen within months of transplant with a poor prognosis (MDS could advance to AML), and then, there is little that can be done … chemo cycles until it becomes ineffective.
Her option, albeit non-curative, is for a chemo protocol (every 8 weeks), until again the chemo is ineffective.
Has anyone cared for someone with identical constraints, or have MDS with a mutated to53 and an allogenic SCT that included a maintenance protocol of chemo to suppress the gene and extend the time before a relapse?
Anything anyone can share with my wife and I is greatly appreciated and will be valuable in her deliberations as to how to proceed.
Sincerely,
Gator
Hi Gator and welcome to this corner of the Community. I am Mike and I help out around our blood cancer groups.
I don't have MDS but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell - Not Otherwise Specified NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Blood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well…….. especially as I have had 2 Allogeneic SCTs…… the first in June 2013…… relapsed confirmed Christmas Eve 2013 with my second Allo SCT in Oct 2015
So let’s look for the group members to pick up on your post.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
You may also want to check out MDS Support UK for some good information and have various support platforms both for patients and caregivers.
Always around if you need further help or just want to talk.
I am about 9 years 8 months out from my second Allo SCT……. no further treatment has been required and aiming to live life to the full like any other healthy 70 year old - all the best to your wife.
