Sunday, August 02, 2009

Next chapter - bone marrow transplant

We have moved from a sustained remission of 6 months to an upcoming mini allogenic bone marrow transplant from an unrelated donor. The donor is a 20 year old international male. We will not be told any more information and can't contact him directly for a minimum of 2 years. We were blessed as this was a 10 out of 10 HLA type match! All of our 3 expert physicians advised us this is the route to take which can be potentially curative. According to them this is our window of opportunity, the door has been opened and we have to walk through it. Waiting would be taking a gamble that the disease would re-emerge and may not be able to be put back into remission with a second round of Campath.

Having read about all the potential side effects, and seeing how well my husband looks right now, it is hard to think about what the coming weeks and even first year will bring. We have faith in God that this is our cross to bear right now and we will emerge in a better place with respect to the T-PLL in the future.

Lots of pre-admission testing, house preparations and the like are making my head spin about now. We have 3 weeks to go before admission and chemo/radiation begin. We are told to expect an average hospital stay of about 3 and a half weeks (if all goes well, longer if not) and a return to a 'new normal' in a year. Day 100 is a key milestone along the way.

I would enjoy hearing from anyone else out there who has been through the min-transplant as I know I will be going through some hell in the weeks to come watching the love of my life going through all this.


AShed said...

Dear T-PLL wife,

I am also a T-PLL wife. My husband was diagnosed in 2004. He had chemo and then a mini mud transplant in August of 2005.
My husbands illness has definitely changed the direction of our lives. Our lives post transplant have been completely different than we could have ever expected. My husband started out very strong very determined he was out of the hospital in 11 days. He did have to return for 3 days due to fever , but he was the poster child for success.
As to what to expect, my husband went to the hospital 3 times a week for blood work. He was very tired, had nausea, and little to no appetite. Mostly he slept.
Things I have learned..nausea medication, give as often as it says you can. Don’t wait for him to feel nauseous. Stock the fridge with ensure or liquid food if he feels like he can’t eat. Let him sleep. When he is up, encourage short walks. Immerse yourself in a hobby or support group. Take time for yourself.
We rented short documentaries or shows that you can continue if he gets tired. One we enjoyed was Band of Brothers, and John Adams series. ( when he is asleep you can watch Sense and Sensibility) ha
After your 100 days and you return home ( if you have to leave like we did) expect to feel insecure. We live in Dallas he had transplant in Houston. I felt so insecure leaving our Dr.’s there. I would advise finding an oncologist that you like and will work with the others and see them often.
My husband has had many complications. See the Dr. immediately if anything is remotely different. My husband had lost his balance. He convinced me that he had an inner ear thing going, just sinus trouble. We went out of state to a family reunion. I worried the entire time because he was still very unsteady. As soon as we came home I made him go to the Dr. and he had had a stroke! Fortunately it was very mild, so don’t let him tell you he is ok if you think something is amiss. You are probably a better judge of how he really is. Do not be afraid to talk to the Dr.s tell them what you are concerned about.
Would we go through this again? Most definitely, in fact we are. My husband relapsed last year and we are looking at doing another transplant. This time we are not leaving home. We are having it here in Dallas so we can come home to our own bed, have our family and friends here to support us. Our Dr. here is wonderful and we have trust in him.


Anne S.

Mark said...


thank you for posting this! I hope you would not mind contacting us directly; please email us!