Haploidentical Transplant

[Amyleighd]

Hi! I am new here and my father had MDS (high risk) and was treated with vidaza which brought him into remission. Being that he is 71 (and in good health otherwise) his options were to stay on vidaza until it quit working or a bone marrow transplant. He decided to go with the transplant because if/when the vidaza stopped working at some point he may then be too old for a transplant. He has a wonderful transplant team at Duke. No matches could be found worldwide for him, so my sister was his donor, who was a half match and he got his transplant on Jan. 13. Today is day +16 and still no engraftment. I was just wondering if anyone else had done a haplo transplant and how long it took to engraft? They did an actual bone marrow harvest rather than blood stem cells so I was wondering if that made a difference in how long it takes?

[PaulS]

Hi - Good question to ask your doctors - if they aren't too worried than you shouldn't be.

I did not have a haplo/chord - but did consider it until we found a matched donor.

My transplant was also bone marrow - not stem cells.

From what I learned about the haplo transplant- it does generally take longer than a conventional transplant - bone marrow transplants also take longer than peripheral blood stem cells. In my case the number of stem cells harvested was about half what they would normally prefer - and it took me quite a while to engraft and start making my own blood cells - I can't remember exactly how long, but 16 days doesn't sound too bad. After 140+ days and some GVHD my counts have really just started to go up. At one point (maybe after a couple of weeks) they were considering asking the donor for more stem cells, which i really did not want to do - and fortunately didn't need. I also had myelofibrosis which also slowed things down -

With umbilical stem cells the number of stem cells can also be relatively small - and I understand the early phases can be difficult and take a while - but the risk of graft v. host is very small and the ultimate outcomes can be very good. As I'm learning - whatever kind of transplant - one has to learn patience - nothing happens as fast as you'd like.

Hang in there -

Best,
Paul

[Amyleighd]

Thank you Paul for all of the information! The doctors don't seem to be too worried so I suppose your right that we shouldn't worry also. It's just hard not too my dads white count is at zero of course so we would like to see some sign of engraftment soon. He has done very well with everything so far. No infections or bleeding issues, very little nausea and walks atleast a mile everyday. He is getting blood and platelets every couple of days but hoping all that will change soon.

[PaulS]

Sounds like your Dad is doing very well so far - don't forget its a long journey.

All the best,
Paul

[Amyleighd]

My dads white count went from 0 to 0.1 today. Not much but it's a start

[PaulS]

That's great! Also keep an eye on the absolute neutrophil count - they wanted mine to be above one before they'd let me out of the room.

Counts will fluctuate so don't worry if something goes up and then goes down - as long as the trend is up things are good.

Best,
Paul

[Amyleighd]

Thanks Paul, that's exactly what the doctor said.

[PaulS]

Ha - glad to hear - and I don't even charge a co-pay.

Make sure you take a little time to celebrate the good news.

Best,
p

[Amyleighd]

Today is day +20 and still no engraftment There was one day....I think like day maybe 17 or 18, that the white count did go from 0 to 0.1 but the following day back down to zero and still there. If there is no change by next week, he will have a bone marrow biopsy to see what is going on. Also checking today to see if he has any type of virus although he does not have any signs of one. Has anyone ever had engraftment occur this late? We are beginning to really worry.

Thanks so much!!

Amy Daniels

[Neil Cuadra]

It took my wife until Day +19 to have enough white cells that she could move out of isolation. She was at flat 0 for 2 weeks overall. If your dad's white cells return in the next few days it won't be that much different. It's definitely scary waiting for them to show up. Good luck.

[rar]

Times will vary quite a bit. It took me 3 weeks to get WBC up to 1. To get normal range platelate took a year, WBC took 5 months, HGB and RBC took 4 months. Be patient. 100% engraftment took a year. I was discharged from the hospital a week after transplant with WBC .1.

[Amyleighd]

Thank you all so much for your responses! Waiting really is hard. Day +20 and still at zero is not very encouraging. Maybe tomorrow we will see something

[Amyleighd]

My dad just found out today that the transplant failed. They will have to start from square one and do another transplant ((