BMT Relapse after 10 years

[Mary D.]

I am writing on behalf on my Brother with MDS. Almost 10 years ago, he had BMT & I was the donor. Everything went well over the years until just recently when a blood test indicated a problem. Long story short, the bone marrow biopsy shows that he only has 50% of my cells & the malfunctioning cells are back.
His DR. at City of Hope in California is trying a medication to increase white cell production & hopefully suppress his old cells. If this does not work, there is one more drug therapy to try. Last resort is a 2nd BMT.
Has anyone experienced a similiar relapse after so many years, & perhaps had a successful treatment?

[Ruth Cuadra]

Dear Mary,

I had my BMT at City of Hope 9 years ago and although I have done very well since then, the possibility of my being in a situation like your brother's never completely goes away. This must be very difficult for all of you.

Short of a second full transplant, has your brother's doctor discussed the possibility of a Donor Leukocyte Infusion (DLI)? This is a process in which the original donor gives some more white blood cells that are tranfused into the patient. The theory is that the donor cells will kickstart a failing immune system and help suppress the bad cells that are trying to make a comeback.

Who is your brother's doctor?

Regards,
Ruth

[Mary D.]

Hi Ruth,
Sorry for the delay in getting back with you. My brothers doctor is Pablo Parker. For the past 2-3 weeks he is receiveing an injection every other day + 3 medications. At the moment I do not have the names. We have been told that this treatment takes 10 weeks to work. If it fails, we will move on to the donor T-cell infusion. If this fails, a 2nd BMT is the last course.
His BMB from 3 weeks ago showed no blasts which is good.
Mary

[Ruth Cuadra]

"No blasts" is very good news, Mary. Good for your brother! Dr. Parker took care of me occasionally when I was in the hospital and I appreciated his calm demeanor.

When you have a chance, please share with all of us the details of the treatment your brother is getting. I'm sure knowing which drugs are involved in his 10-week protocol would benefit other Marrowforums members facing MDS.

Take care,
Ruth

[Mary D.]

Ruth, I will try to get the name of the injection & 3 other meds my brother is taking. In the past 4 days, he has experienced a great deal of pain above his ankle. Thought it might be a blood clot, but the ultra-sound ruled this out. However, no definate word on where the pain is coming from. It may be the meds, but unclear at the moment. I have a friend that works in BMT at a different major hospital. The Dr. there feels that going straight to the T-cell infusion would be best & not take chance with the drugs. Does anyone have experience with this? Ruth, I would like you to know that my brother had no idea that he was getting ill again. Until the blood test showed low counts & a further blood test was ordered. If I were in this position, I would personally insist on the Dr. running this more extentive test (or a biopsy) to make sure the defective cells had not re-appeared. (Regardless of normal blood work).
My brothers cells are quickly taking over & now at close to 70%. This is not good & he looks as bad as he did pre-BMT the first time.