Day +39 = NO ENGRAFTMENT!

[Stephanie]

On Tuesday my son's biopsy results from the previous week came back and showed that only his T-cells were present, no donor cells. He received an unrelated cord blood transplant for MDS on December 22. His ANC has been 0 for over a month now and we are scrambling to find a donor ASAP. He did not have great matches when a search was first conducted back in October 09. The three adult donors that were found were mismatced at two or more spots. My concern is that if we go ahead with one of them, if they are willing, we will experience severe GVHD. There are also some other cord blood samples that are available. Does anyone have any experience with failed first transplant and successful second transplant? I know the longer we wait the more subceptable he is to infections. Thank you for any input you might have into this difficult situation.

[evansmom]

Stephanie,

I am so sorry to hear about your son, a worrisome situation to say the least.

My son had a mismatched unrelated BMT in June 2008. The donor was a 9/10 with the mismatch on the alelle of DQB1. This is not an overly important area to match so if any of the available donors mismatch here, that may not be a big problem. A mismatch at A,B or C is much more serious.

Cord blood is more forgiving due to it's relative lack of exposure to viruses and therefore lack of antibodies. A perfect match is less important here, and may very well be the best choice at this point.

Did your son have a full myeloablative transplant or a reduced intensity transplant? At this point, if his health can tolerate it, he likely needs all the big guns to completely wipe out his immune system and maybe higher blood levels of cyclosporin post transplant to keep him at 100% donor.

Without an ANC, and being post BMT, he is so very susceptible to infections, particularily of a fungal nature. Keep him far away from any potential sources...mold, mildew, bird droppings, non-domestic animals of any kind, schools, barns, old buildings and the list goes on. I'd be putting an N95 mask on his little face anytime I had to take him somewhere questionable. It may not fit him entirely correctly, thereby reducing its effectiveness but at least it's better than nothing.

Time is of the essence. Would a prophylactic antifungal med be appropriate here?

Best wishes, stay strong.

[Stephanie]

I am not sure where the exact mismatches are but I know there are more than one in A, B, or C. The doctors have spoken about using ATG to combat the GVHD. The first time around he received four days of Busulfan and Fludarabine but now they are talking of administering six days of Fludarabine. I wonder if it made a difference but at day +8 they switched him from Cyclosporine to Tacrolimus because they said there was a national shortage of Cyclosporine. I have not been able to confirm that. I know it isn't helpful to think about the "what ifs" but it is frustrating to not know why.
Thankfully he is still in the hospital but it is hard to keep his spirits up when we were so ready to be out. He is on Voriconazole prophylactically and Gangcyclovir. He did test positive for Rhinovirus so we are watching him closely for any other infections. Waiting is the most difficult aspect of this whole ordeal. It is hard not to get over stressed just thinking about everything. Thank you for the suggestions and positive thoughts.

[Neil Cuadra]

Originally Posted by Stephanie

Does anyone have any experience with failed first transplant and successful second transplant?

You might read Wendy Beltrami's Hello Old Friends thread, about her son Grant, and their caringbridge page.

[squirrellypoo]

Originally Posted by Stephanie

Does anyone have any experience with failed first transplant and successful second transplant?

There's another patient at King's who had her transplant around the same time as me, and her story slowly emerged - this was her fifth BMT, and this time it had FINALLY worked. Apparently she's being written up for The Lancet and is being held up as a beacon of hope for everyone who's come into transplant problems. I can't even imagine her fortitude and force of will, it's awfully humbling. Stay strong for your son.

[Stephanie]

On February 25, my son underwent his second Bone Marrow Transplant, this time with PBSC and hopefully things will go better this time around! He has THANKFULLY remained infection free, and now the biggest concern is GVHD since it was a mismatch at antigens B and C. I am optimistic that he will be in the 20% that doesn't experience any GVHD! Doesn't hurt to think positive! Thank you for all of the positive thoughts/energy coming our way...it has been a long journey thus far and will only get better day by day!