[Terrij]

Allo transplant experiences?

by Terrij on Tue Dec 16, 2014 1:05 pm

Anyone who has experienced an allogeneic transplant - Info about your experience would be appreciated. My daughter is having one in January with her brother as her donor.

[Multibilly]

Re: Allo transplant experiences?

by Multibilly on Tue Dec 16, 2014 5:21 pm

Hi Terrij:

See this thread,

"Allo transplantation - what are your thoughts?" (started Sep 30, 2014)

"Mark11" is probably the most informed allo patient on this forum, but you will also find some other great posts from LibbyC and others on this site.

[Terrij]

Re: Allo transplant experiences?

by Terrij on Wed Dec 17, 2014 12:12 am

Thank you Multibilly. I have read a lot about it but wanted to try and get some personal experiences. Following some threads here I have also read Mark 11's postings. He is very knowledgeable.

[Mark11]

Re: Allo transplant experiences?

by Mark11 on Wed Dec 17, 2014 4:51 pm

Hi TerriJ,

Allo transplant experiences are going to be very different because the conditioning used is very different depending on the patient's situation. I used myeloablative (full) conditioning. I was in the hospital for 29 days. Some patients that do "mini" allos do the transplant all as an outpatient. If you do a t -cell depleted allo transplant (Robin Roberts did one of those), there is almost no chance of having extensive chronic graft vs host disease. For some types of allo transplants, extensive chronic GVHD is a major issue.

It is often said here on the forum that a patient should get as many opinions as possible for myeloma treatment. If a patient is going to do an allo, it is good to go to different centers (if possible), since there are different ways to do an allo.

Mark

[LauraScot]

Re: Allo transplant experiences?

by LauraScot on Wed Dec 17, 2014 5:48 pm

Hi Terrij,

I had my allo in May this year as part of tandem auto allo. My allo was with RIC (reduced intensity conditioning), or some times called a mini-allo. I did my allo as upfront therapy, after being diagnosed last year.

It is clearly a worry going into it, but for me so far, it has been fine. The procedure itself involved 2 weeks in hospital. The only 'bad' day I had in hospital was the first day of ATG infusion which gave me a high temperature, I had been told to expect this. But this bad day was nothing compared to the previous auto bad days, which was fully myeloablative. I have followed doctors' post treatment advice closely, and I haven't had any infections or an upset stomach after the allo - I haven't had any re-admittance to hospital, just lots of clinic appointments.

Chimerism was first tested at day +100, and this showed I was 100% donor. Since then the donor T cells % has drop a very small amount

There was the expected tiredness after, which takes a long time to recover from. I had a little GvHD in the form of a skin rash, which was successfully treated with steroids. So far everything has been good and no myeloma detected. I've still a way to go yet before fully recovered and back to work hopefully next summer (I've been advised best to have at least 12 months off after allo). And there is still a risk of cGvHD

I think a lot depends on how you are physically going into the treatment. I was fairly fit going into my auto, and I had 4 months between my auto and allo which I spent trying to build my strength back as much as possible. The treatment does knock you down, but knowing and accepting that is going to happen, then getting a little bit of exercise each day has really helped me (I went for a small bike ride the day after I came home from the allo because I enjoy it and it is important to me to do).

Best wishes to you and your son and daughter,
Laura