5 replies to this topic

[leijson]

Hi everybody,

I am Jolanda from the Netherlands, sorry if my Englisch isn't so good, but please forgive me. I was diagnosed in jan 2010 with cml. Started on Glivec, but failed, started in sep 2010 with Sprycel but failed, started with Tasigna june 2011 but failed and oct 6 2011 I had a mini stemcelltransplant from a Unreleated donor with reduced chemo and radiation, because of my age (hoping to turn 50 next july, keep my fingers crossed). Now they want to give me another transplant from an other donor to, to try it again. Is there somewhere among you who had 2 stemcelltransplant. I would love to hear from you. I am so afraid to do this again and fail again.  Greetings from beautifull Holland   Jolanda

[Judy2]

HI Jolanda. First, I am so sorry to hear all that you have to go through. Please know that everyone on this board is rooting for you. Unfortunately, I can't offer any medical advice as I am not that well versed on cml but hopefully our resident expert, Trey, will help out. Wishing you all the best.

Judy

P.S. Your English is great.

P.P.S. I always wanted to go to Holland. I live in semi-beautiful Massachusetts.

[Marnie]

HI, Jolanda and welcome to the forum. 

I have a friend who is hoping to undergo a stem cell transplant for CLL.  She wasn't supposed to do the first of 2 transplants in early November, but her numbers were not doing well enough for the transplant.  CLL is not the same as CML, but if she is able to undergo the transplants, I will let you know how it goes.

Best of luck to you, and we hope to hear from you more.

Marnie (from beautiful Colorado)

[Trey]

You can find people who have experienced 2 transplants on another part of the L&LS website:

http://community.lls...iew=discussions

I did a search on that location that may help you:

http://community.lls...ther transplant

[hannibellemo]

Jolanda,

I've read some of your posts on newcmldrug and I'm sorry to hear that your mini transplant has failed.I don't remember all of your history but here in the US age 49 would not be considered too old for a full transplant, is there another reason your docs opted for a mini?

Are there any trials available for you in your country for bosutinib or ponatinib (not sure of the spelling of either of those)? Those appear very promising, especially if you are dealing with the t315i mutation. I'm sorry if I am restating the obvious, I just want to make sure all the bases have been covered.

Please keep us posted and I'm wishing all the best for you.

Pat

[ritan/]

hi! welcome. and by the way your english is far better than any of my non-english, so you're in good shape. i haven't had a Bone marrow transplant, but i have been reading a blog of a lady who had acute leukemia who has had two: http://anngregory.blogspot.com/ she seems to be doing well now. she is somewhat younger (in her 30s i think). but it might be helpful.