Anyone have 2 BMT ?

[amyangel]

I have not wrote anything on here in awhile . As many of you may Know Amy did not graft . and Dr. Hari wants to do another transplant and try it again . ??

Just wanted to know if any one in here has had to have 2 BMT
He is going with a new donor and he wants to do it again this mid - Feb already

I totally trust his judgement and call for another transplant , but I am scared.
Amy's counts are right back where we started when we came in for the first Transplant . BAD

This time they may do inpatient ,but it will all be decided by the many team of BMT doc.
Today I was told some are for another transplant and others are not.
We have started vidaza again because her BMB last week is still showing no change in her MDS that it's still there and that the chemo they did on her did absolutely NOTHING.

Of course she will have to go through orientation all over again and all the pre-testing ...

I'm a mom and of course I want her will again this is so very sad .
I can not kiss her pain away , but I kiss her pain anyway Moms would do anything for there child . Jesus please heal my baby ! Thank you Jesus

Merry Christmas everyone !
Sue and Amy

[DanL]

Sue,

I don't recall seeing anybody on the forums who has had a second transplant. Here is what I was able to find with some data behind it, but the article is 4 years old, and is probably using data that is over 10 years old on average.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3426446/

Some of the primary factors for a better result are 1) lower age and 2) lower disease burden at transplant. Overall health is of course important as well, so being in the best shape possible helps.

I do hope that Amy is eligible and strong.

[amyangel]

Hi Dan ,
Thank you Dan for the information I have not heard her Doc. talk about relapse??? But I hear him talk about Graft failure ..

I am thinking it could be similar ,but yet not ... Amy never , never grafted he body destroyed the new cells just like it keeps destroying her own cells .

So people that have relapsed indeed engrafted for at least six months sounds like to me ??

Where yes I was told when Amy hit on 1 day 5.0 that her body was now engrafting , but it only lasted 1 day and her numbers dropped again which than caused graft failure.

Things I have been told why she did not GRAFT
1. not strong enough chemo ?
2. Amys immune system was much strong than they all thought ?
3.Amys phenobarbital was messing with her Pro-graft ?
4.not enough t- cells where put in with the new donor cells?

I sure hope they took great notes for the 2nd transplant .

Amy for sure is a puzzle , but God sure makes them great !

I was told yesterday that Amys BMB had not changed at all from the Aug. BMB which means to me that the chemo never touched anything .

Amy's WBC , ANC, Hemo , Platelets are all effected by the MDS

Today Amy's ANC is wiped out from the Vidaza
white is 0.6
hemo 8.0
platelets 26
in a few week her numbers should come back up a little better ,well we can hope and pray they do so she will have some kind of an immune system .
I guess the only thing good that has happen so far and we are thankful is she has not needed to take or be supplemented with potassium and the Mag. is kind of hold its own at 1.6 but hopefully after her 1st. cycle of Vidaza again that too will improve .

She also is not having gallbladder issues ,but Vidaza make your stomach feels like not eating her liver counts are high due to not wanting to eat right now. she needs more protein .. an good thoughts on how I can get her to eat more protein ?

When she had chemo before transplant she ate like a PIG !! lol and now I have a hard time getting her to eat anything .

So I am hoping be at home again her appetite will improve . I need her to stay as strong as she can before next transplant .

Dan are you doing Belly shots of Vidaza ? or IV ? This time they are doing belly shots and I have to say the side effects are less than IV .


Thank you so much for listening .


Life isn't good without God !!

Sue Amy's mom

[bailie]

Thank you Dan. That document is something that I will keep close at hand. Very good information for post-SCT.

How are you doing now?

[DanL]

Sue

wow, a lot of good questions and mysteries. I'll start with the easier ones. for nutrition and protein i have used protein powder - chocolate muscle milk worked well, and would mix it with milk, or juice, mangoes and strawberries. this brand mixes well and actually tastes like chocolate. i would also add bananas. i also started eating more lamb for protein. the flavor was way better than chicken or pork.

i receive vidaza via iv over twenty minutes and have not had any real issues. i do take caitrol or zofran prior to each infusion, but generally don't need it again during treatment days.

as for graft failure, the chimerism studies probably give the best answer, and i think that anything below 85% is considered failure. i am not sure if from a clinical perspective relapse or graft failure present different options. either way, it seems that the answer is to control the disease and then get to a position where transplant is an option.

@ bailie,
i am doing well. just finished my fifth cycle of vidaza, still on photopheresis four days per month, still have low grade gvhd of the skin, eyes,and gut but overall, life is good. last biopsy showed improvement from August, and i am still fully donor cells in the marrow and peripheral. marrow is spotty ranging from 5% to 60% cellularity, which may be an improvement. thank you for asking.

[Cheryl C]

Can't give you any advice Amy's mum, but just want to wish you both all the very best and will pray that the decisions made will be the right ones for her.

We haven't heard from Ray (rar) for ages. Does anyone know how he is going?