MDS and BMT … any successes???

[lbeachbum2]

Hi all
2 more months till my BMT ,, they are close to a match and then after harvest I will enter North Shore University Hospital on Long Island ,, I know that we hear more from people still fighting MDS but this time I would love to hear any stores of Cures , so if you or someone you know has been cured with a SCT or a BMT ,,, I would love to hear from you ,, lately all I have been hearing is sad stories … lets start this thread for successful stores ,, I hope to do my part by having a smooth BMT in march …thanks Mike

[patti]

Mike,

There are a couple of folks on this board that have had successful transplants. Hopefully they will chime in and tell you their stories for encouragement.

All the best as you start your journey.

patti

[katiebear]

Hi Mike,

I could use a few success stories too. My dad is going into Sloan on the 23rd of this month for a SCT. Good luck to you.

Katie

[SimonChai]

Hi, MIke. I don’t think I can consider myself cured this early in the game, but I had a successful double-cord blood transplant for MDS in April 2006. I’ve got chronic GVH of the gut but so far, my disease is in remission. I’m able to work 3/4 time and feel that life, while challenging, is good! I am worried about relapse and long-term side-effects, of course, but I’m very, very grateful for this second chance. So far, so good. Please let me know if you have any specific questions. All my best to you.

[J.claire]

My good friend’s daughter will celebrate her four year anniversary of her bone marrow transplant on Jan. 23! She feels wonderful!! She lives in Florida. I wish you all the success that she had. I’m sure there are many more positive stories still to be posted.

[Jimbob]

I am almost at 34 months post transplant after CMML suddenly erupted into extreme AML. I am supposedly totally cured but I am stil trying to beat some of the after effects. Quaity of life is okay, definitely better than the alternative, but I still have chronic fatigue, chronic pain with periphial neuropothy, and more than a bit of “chemo brain. I actually had some of these problems before but the SCT did make it much worse. But I am alive and getting better day by day. Postive attitude and get yourself ready in every way that you can. I do reccommend nutritional and natural methods to help get your body ready. Also get you dental health up to snuff because you won’t be able to have dental work done for many months after. Andthat may help keep down GVHD in the month, throat and stomach.
Jim

[SLStrout]

Hello friends,
I have never posted to any forum before, so I’m not even sure what I’m doing. But I’m so glad I have found this group! My husband has MDS RAEB, Int.2, and was diagnosed with it 8/06. He’s been on Procrit (60,000) weekly, and is on his third round of Vidaza this month. He is a very young 62 and is potentially going to have a BMT in the coming months. Very scary to consider. City of Hope in Duarte has found a 10/10 match for him, but we don’t know if the donor has been contacted officially. I don’t really know what I’m expecting here at this forum, but wanted to get ourselves introduced. I look forward to any comments/experiences. Pls. let me know if I need to provide more info. Thanks, and best of luck to us all.

[lbeachbum2]

Just checking for any new stories …Bump

[willie]

SLStrout There are many items you both will need to consider but some of them are practical in nature. You will need to find a place to stay for 3-4 months within 15 minutes of the hospital. My wife needed to be that close twice – once when she had a bout with GvHD and once with a serious blod clot. Secondly, it would really help if you could find a second person to be a caregiver with you for the preop time and for 3-4 weeks after the initial chemotherapy. The chemo can be administered round the clock and there are meds to give prior to giving the chemo. Maybe City of Hope does it differently but at the SCCA the caregivers gave the chemo three times a day and it is timed to mesh with the transplant time of day. Likely you will have a chemo administration at 2 in the morning with prep meds an hour earlier. It is just much easier for 2 caregivers to support each other during this time.
Willie

[g-masews]

Luckily you are not too far from City of Hope. They have housing right on their campus for the transplant patients and a good website to answer many other questions, but they will also give you all that information prior to admittance. Best of Luck to you.

[Billy’s Dad]

Hello,
I have one of the GREATEST success Stories. Next month (Mar. 4th) will be 3 years since our Son received a bone marrow transplant from an un-related Donor who was a 10/10 match. You can read all about Billy’s Story by visiting Billy’s Page . I am currently on Page #89!

Be Well,

Billy’s Dad {Bill}

[lbeachbum2]

I got a call today from the Hospital they located a 9/10 match and want me to come by with my family next tuesday to discuss, my oncologist believes this means that we must be within a couple of weeks of the MUD SCT …. thanks for the thoughts ,,,Mike

[Billy’s Dad]

….That’s just FANTASTIC news! a 9/10 match!! We will continue to hold you in our Hearts.

Bill

[lbeachbum2]

So Im now BMT + 8 days …..lots of bearale mouth sores ,,, no prolem with th chemo reactions and all the doctors here say Im doing great …. question here is next week the Bone Marrow that was donated , should start producing Blood cells ,,, a what point will I knw that Host V Graft and Graft v Host fo the most opart is clear of any fatale outomes and I can start to uncross my finger ………. Mike

[jga_socal]

Mike, do you have a blog where you can post your progress? Like http://www.caringbridge.org or http://www.carepages.com?
We’d love to stop by and provide support and encouragement as you recover from your bmt. This is your second xplant so you’ve already proven your toughness.
My understanding is that the 100 day mark is a milestone or sorts. The official milestone used by marrow.org people is 1 year. My second opinion doctor says I should go for the sct by end of the year since my blasts count has increased. So, I’m looking for all the success stories I can find! I’m counting on you to pull through!
Jim

[Author]

Posts