Post stem cell transplant (SCT) relapse after 12 years

Posted by topeydane @topeydane, Mar 3 2:40pm

Have any of you relapsed after a long stint of being cancer free 12 plus yrs from CTCL from having a stem cell transplant? If so, what treatments worked for you? Or has anyone had a successful 2nd SCT after relapsing from your 1st Stem Cell Transplant. I’m scared.
Tomorrow I have an appointment at one of the leading cancer centers where I had my SCT in 2011. Some of the information online is frightening. I appreciate stories of what worked or didn’t work when attempting to get back to remission or extend life.

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

Lori, Volunteer Mentor | @loribmt | Mar 3 5:56pm

Hi @topeydane. Well, darn it. It must feel like a gut punch after so many years of being cancer free. A relapse is the last thing any one of us with a SCT wants to hear. I’m so sorry this has happened with you.

I’d like to introduce you to @timt347. Tim had a SCT for AML and has experienced a relapse. From what I’m understanding, a 2nd transplant isn’t in the cards for Tim. But he is undergoing treatment. While your diseases are different the emotions are the same.
Does your doctor know if this is a relapse of CTCL or a new condition that has developed?

alive | @alive | Mar 4 7:27am

I’m so sorry to hear about the relapse! I had my SCT 7,5 years ago and doing well. However, I am part of a Facebook group of SCT recipients and several of them had to get a 2nd transplant. A few had it from the original donor. I hope doctors are able to offer you good options. There have been a lot of advances in treatment of blood cancers. Wishing you all the best!

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