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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Tue Nov 6, 2012, 06:30 PM
newfintexas newfintexas is offline
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Tomorrow starts the BMT process!!

Well..it's funny, we've been almost ignoring the fact that the transplant time is approaching, then all of a sudden here we are. Tomorrow hubby gets admitted and Thursday starts the chemo to totally wipe his system out, then next week the actual transplant - we've been sort of walking around the house, not bored, not restless, not scared - just sort of in a daze. I know deep down that this is exactly what we need to do,but the thought of watching Lee go through this and not being able to do much to help him is hard! I keep telling myself, we are so very lucky - many can't find a match or for reasons can't have a BMT but still the not knowing is nerve wracking. Hubby is doing great, says he is more worried about the chemo side effects then the actual transplant.
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  #2  
Old Tue Nov 6, 2012, 07:04 PM
Neil Cuadra Neil Cuadra is offline
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Good luck, Laura. I know the daze you describe. It's a strange transition where you put yourselves in the hands of the transplant facility and depend on the skill of the medical staff, the magic of the process, and the marrow of your generous donor.

However, don't think that you can't do much to help Lee. If you're going to be there with him then your job is as important as anyone's, to be his voice, to deal with practical problems that might show up, to let family and friends know what's going on, and most importantly to have him know you are there.

You are welcome to post here if you have time, to let everyone know how you and Lee are doing and to rely on support from our patient/caregiver community.
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  #3  
Old Tue Nov 6, 2012, 08:24 PM
newfintexas newfintexas is offline
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Thanks Neil ..your words hit home. And you are so right, I've already found out that I need to be there not only to be a voice, but to remember. Lee has so much thrown at him and was/is dealing with what they called chemo brain that he doesn't always remember what is told to him by the staff and doctor.

Thanks again, I needed it.
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  #4  
Old Tue Nov 6, 2012, 09:28 PM
Cam Cam is offline
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Good Luck and Gods speed through the process. I hope to be getting my BMT next month.

Cam
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #5  
Old Tue Nov 6, 2012, 09:42 PM
MDSPerth MDSPerth is offline
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Good luck to you both. Lee wishing you a speedy recovery.

Everything has moved so quickly for you. The process of finding a donor seems to move much faster in America than here in Australia. We have been told 6 months is the average for finding out if there is a MUD.
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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  #6  
Old Tue Nov 6, 2012, 11:53 PM
newfintexas newfintexas is offline
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Thanks so much all. Feels good knowing we are not alone, can always count on the forums. Yes it was fast for sure for Lee - just a month and a little. The chemo wasn't working and his liver was showing damage after only 4 of the dacogen. His doctor had hoped to get at least 6 in but when the liver started and then his marrow stopped producing even red cells and platelets altogether, transfusions were averaging 3 - 5 of something every week to ten days, the bmt team decided not to wait....and here we are. he was diagnosed on June 29th, his age - 56 and health played a part to I think since all the testing they did on heart and lungs etc etc etc all came back good. But yes thankfully we don't have to wait any longer. The docs say that here it is usually at least a month to month and half - of course we had started looking at a bmt back in late July when they realized that Lee was moving to the high risk mds quickly.

Thanks again everyone, Thanks Neil for having this site - I will certainly keep updating. The thought of a cure for us after the bleak prognosis we were given just a few months ago, certainly makes us believe in miracles.
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  #7  
Old Wed Nov 7, 2012, 12:01 AM
newfintexas newfintexas is offline
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Cam..

Wow, you sound like you have a great doctor as well. That is pretty much what our doctor said, he doesn't want to do anything but cure - and this is the way to do that. I wish you so much great luck in this. Please keep us posted, seems we will be going through this at close to the same time frame. I do find that there isn't enough people who continue to post once they are through especially the 100 days post bmt. I hope not to forget all the help we've received through this forum and hopefully can help and provide hope to others as time goes on.
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  #8  
Old Wed Nov 7, 2012, 02:12 PM
DanL DanL is offline
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Best of luck with the transplant!
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #9  
Old Wed Nov 7, 2012, 08:12 PM
kris kris is offline
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Keep moving no matter how bad you feel....

Nov 1st was one yr post transplant for my husband. He is doing well, still on immunosuppressants, still careful about exposure to germs and virus but doing very well and stronger every day.
The best advice is keep moving. Every day walk , then add balance, then hand weights. When strong enough one flight of stairs and progress. DO something physical every day. BE POSITIVE ! Time is all you want and all you have.
God speed!
Kris
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  #10  
Old Thu Nov 8, 2012, 02:03 PM
mausmish mausmish is offline
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Best of luck to you, Lee! Great advice, Kris. Laura, remember to take care of yourself, too! You have the hardest job. We transplantees have to focus only on getting better. You have everything else. Hugs. Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #11  
Old Fri Nov 9, 2012, 08:31 PM
Lori Patrick Lori Patrick is offline
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Good luck! I remember sitting at home waiting for the hospital to call that they had a bed ready for me. It was my 52 birthday when they began my chemo. They have drugs for naseau and I took them. I took all the medicines I could to be able to live with the least amount of side effects (or affects!). Your role as caregiver is so HUGE. My husband was beside me the entire time. He slept on the floor in a sleeping bag and/or on the couch during the nights and went to work during the day. I could not have done it with out him. I am still plodding along and am alive! Blessings to you. Keep us updated.
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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