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  #1  
Old Thu Feb 21, 2013, 10:03 PM
LoveRapheal1 LoveRapheal1 is offline
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Bone Marrow Transplant

Has anyone had a successful bone marrow transplant? I am a 38 year old female and have been post ATG by about 5 months and my counts are still low. I have a 10/10 unmatched donor waiting for me and I don't know what to do. I may lose this opportunity if I wait and my coverage runs out or job status ends I may lose this opportunity. I'm not allowed back at work because my cells are too low and at risk of infection. I am putting my health first now but I must make a decision. I wonder if anyone has undergone this treatment. I have severe aplastic anemia only. That is my only condition. I would appreciate any advise possible.
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  #2  
Old Fri Feb 22, 2013, 04:27 PM
Janire Janire is offline
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I am waiting for a transplant too and I am really scared. On march 15th I have to go to talk with the doctors about it and make pretrasplant tests.
The doctor told me I have 2 donors with a "reasonable compatibility". He doesnt want to tell me more by phone and I am freaking out. What is a reasonable compatibility??
I am 33 years old and with a looong AA history. I am scared because of the amount of transfusions and everything....
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Janire, age 31, diagnosed AA september 2007; treated with ATG november 2007, no response; 2xATG april 2008, total remission..... RELAPSE and 3xATG in april 2011....now waiting for a response... not always easy. Http://anemiaaplasica.blogspot.com
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  #3  
Old Fri Feb 22, 2013, 08:55 PM
Cam Cam is offline
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I had a BMT 78 days ago. I am 39 years old. Well 78 days old now ... I was readmitted to the hospital today with the BK virus. It is not fun, but it to will pass. All my numbers are now in the Black. Prior to the BMT I had 23 blood transfusions, since it I have not had any.... I have had GVHD (resolved with prednisone) and now I have BK. I look at these as hills in my journey. Last week I was running 3.5 miles a day and lifting weights... Would I say it has been easy Heck no... I did this so I can see my children graduate HS, and beyond. Would I do it again, in a minute. I had a 10/10 match with the same blood type... If you want to talk please send me a message.. I truly think your attitude makes all the difference in the world.. You have to look at it as a battle and something you have to beat. Losing is not an option. If you want to read about my journey look for Hunkering down to beat MDS on facebook. It is my journey in my wife and my words...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #4  
Old Fri Feb 22, 2013, 11:18 PM
LoveRapheal1 LoveRapheal1 is offline
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Transplant

Quote:
Originally Posted by Janire View Post
I am waiting for a transplant too and I am really scared. On march 15th I have to go to talk with the doctors about it and make pretrasplant tests.
The doctor told me I have 2 donors with a "reasonable compatibility". He doesnt want to tell me more by phone and I am freaking out. What is a reasonable compatibility??
I am 33 years old and with a looong AA history. I am scared because of the amount of transfusions and everything....
You should read about squirrlypoo. She had a positive outcome. Plus you are much younger. You may very well have a more positive turnout then. The best compatibility is 10/10. If they can not find one then maybe you can look into various organizations or ask about it so you are prepared. I wish I knew more myself. Be persistent and call again. Simply say, "I need to know what a reasonable compatibility is." After all you are dealing with your life and you need to know what the match is. You want the best match possible if that can be provided for you. That's what I would do.
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  #5  
Old Fri Feb 22, 2013, 11:32 PM
LoveRapheal1 LoveRapheal1 is offline
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Yes that is the right attitude. It sounds as though the transplant worked. I believe that I will beat this in the now too. I'm just trying to find more information. I wonder, 'Did your counts increase?' and if so how long did that take? Good luck and I admire your strength.
Quote:
Originally Posted by Cam View Post
I had a BMT 78 days ago. I am 39 years old. Well 78 days old now ... I was readmitted to the hospital today with the BK virus. It is not fun, but it to will pass. All my numbers are now in the Black. Prior to the BMT I had 23 blood transfusions, since it I have not had any.... I have had GVHD (resolved with prednisone) and now I have BK. I look at these as hills in my journey. Last week I was running 3.5 miles a day and lifting weights... Would I say it has been easy Heck no... I did this so I can see my children graduate HS, and beyond. Would I do it again, in a minute. I had a 10/10 match with the same blood type... If you want to talk please send me a message.. I truly think your attitude makes all the difference in the world.. You have to look at it as a battle and something you have to beat. Losing is not an option. If you want to read about my journey look for Hunkering down to beat MDS on facebook. It is my journey in my wife and my words...
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  #6  
Old Sat Feb 23, 2013, 02:10 AM
SLB SLB is offline
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Hi everyone, I too are waiting for my transplant which is scheduled for the 6th of march.My conditioning chemo starts on wed. And even though I knew this was coming and use to be so positive, the whole thing terrifies me! However my story is different as I only have an 8/10 match, and have since Nov last year have been in hospital for 12 out of 14 weeks. I transformed from meds to aml and had induction chemo which failed and second lot of chemo (with a stay in icu due to an infection) which has produced remission but no real count recovery & are basically getting platelets every second day and red twice a week. But terrified or not what choice do I have!Like u Cam I have two children 5&8 who need their mum! Good luck everyone and I say grab the chance while you are well. I am already so tired of hospitals & being away from my kids & have lost 8 kilograms so far. But this is my only option so I have a few days to work on my positivity & find some mote inner strength and get this done.
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #7  
Old Sat Feb 23, 2013, 07:11 PM
LoveRapheal1 LoveRapheal1 is offline
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I think you will be OK. You have your age in your favor. So that is good. Squirrelypoo's story inspired me. It sounds like her transplant worked well for her. The computer is horrific. You should try and read some positive stories. That story made me feel much better. I'm hoping to hear more responses about this transplant prep myself. Please keep in touch. I am in Staten Island. We can chat over the computer and I can keep you in my hopes and prayers too. Good luck to you and your children.
Quote:
Originally Posted by SLB View Post
Hi everyone, I too are waiting for my transplant which is scheduled for the 6th of march.My conditioning chemo starts on wed. And even though I knew this was coming and use to be so positive, the whole thing terrifies me! However my story is different as I only have an 8/10 match, and have since Nov last year have been in hospital for 12 out of 14 weeks. I transformed from meds to aml and had induction chemo which failed and second lot of chemo (with a stay in icu due to an infection) which has produced remission but no real count recovery & are basically getting platelets every second day and red twice a week. But terrified or not what choice do I have!Like u Cam I have two children 5&8 who need their mum! Good luck everyone and I say grab the chance while you are well. I am already so tired of hospitals & being away from my kids & have lost 8 kilograms so far. But this is my only option so I have a few days to work on my positivity & find some mote inner strength and get this done.
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  #8  
Old Sat Feb 23, 2013, 08:36 PM
BrianFlaigmore BrianFlaigmore is offline
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I just want to tell you guys that there are lots of positive stories. I had a unrelated transplant last June. I have many many previous transfusions for quite a while.
Today I am back doing most of what I was doing before. I now have some GVHD of the skin, but it is very minor. I often got caught up in what I read online, it is good to know about the process and your illness, but unnecessary stress is well, unnecessary.
Blessings to all who are undergoing a transplant or are about to begin.
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26m Mystery liver failure 6/11 treated with prednisone. Falling counts, Rituxan attempted for Evans syndrome 11/11. Tx dependent and SAA dx 12/11. hATG 2/12, no response. MUD BMT 5/6/12. Living life!
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  #9  
Old Sat Feb 23, 2013, 09:13 PM
Cam Cam is offline
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My counts are all in the normal range now. Prior to coming in for the induction regime I had hemaglobin counts as low as 6.5 and now they are all in the normal range, my bloodwork today was 14.2... All my other major markers are all in the positive also. Prior to getting BK virus I was working out and doing 3.5 miles run/walking.

For both of you I truly believe that attitude is 90 percent of this. You can wake up each morning and say this day will be horrible or OK.. Even when you feel awful get out of bed, take a shower, and do something. I had another rule too, the bed was for sleeping not to just lay in... Also my hospital has an app so when they do blood work as soon as it hit the computer I could check it... I felt that made me part of the team because evey morning they posted the numbers I would call them...
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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  #10  
Old Mon Feb 25, 2013, 01:47 PM
kris kris is offline
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Positive Outcome!

Yes, there are plenty of positive outcomes. My husband is 17 months out. Still tapering immunosuppressants. He has had very little GvH. he is the most compliant person. Does as he has been instructed, doesn't take risk nor cut corners. So may people go into transplant thinking once the procedure is done the journey is done. It has just begun. It is a gift of time. Rick is cured of MDS! He was taking only one med prior to transplant. He still takes 18 pills a day. The body needs time to adjust and repair. Someday he maybe off these meds but right now Life is good. That was the goal to be alive and active again.
It wasn't easy but well worth it.
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Kris, wife of Rick. DX; MDS/ Ringed Siderblast 5/2006. Supportive care, then Vidaza x 25 mo. HSCT 11//1/11 doing GREAT!
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  #11  
Old Mon Feb 25, 2013, 03:52 PM
Momhope Momhope is offline
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Hi All

it so good to be here and read all of this story, My Mom is 67 and here MDS is about to change to AML, Dr only giving her 40% chance of suvivor if transplant is done but eventhought is only 40% is a high percentage vs. to the her other option if nothing is done.. So I really would like here to have her transplant done; I know with God willing she will be good and also know that if we all stay positive we all going to be doing good. so let God decide what plans he has for us , we just need to have hope and believe on him, he will give us what we need. knowing that I know my MOM will be great after transplant..
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  #12  
Old Mon Feb 25, 2013, 11:36 PM
Cheryl C Cheryl C is offline
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All the very best to your Mum! and to you too as you support her.
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Dx MDS RAEB 10% blasts + hypogammaglobulinaemia, Sep 2011. Jan 2012 BMB - blasts had reduced to 2% without treatment so BMT cancelled. IntraGam (gamma globulin) infusions 4-weekly since then + watch and wait. Now MDS RCMD. Pancytopenia. BMB A/T 12 Feb 14 - no blast transformation. Still stable.
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  #13  
Old Tue Feb 26, 2013, 07:51 AM
Keri Anne Keri Anne is offline
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Living life on Life's terms ;-)

Good morning all,
My husband was diagnosed 10/26/11 with MDS. First of all, those of you waiting, undecided, or already have had the Aloe or Auto transplant. It is a very difficult decision and process to go thru, for you and your family. However, I am so thankful my husband chose to go thru transplant. It is a very tough decision. I, as a caregiver can only express what I experienced and each one of us is different. You can follow our story on Caring Bridge search for Tom Wilcox. I noted everyday all medical, mental, and emotional events we experienced during the process. Yes, "Process." Everything in life is a process in which every day the "Event" happens and we can choose to accept and make the best of what life gives us. Tom and I did just that.
If anyone out there has questions or just needs a shoulder, I am here. I am truly blessed that God chose me to be with my husband during the process.
I found the Marrowforums back in 2011 when he was diagnosed. Looking for information on the disease and how it correlates with Vietnam. My husband spent 18 months in the jungle. From 1970-1975. If there is anyone out there with medical evidence, advice, etc. please let me know. My husband made me promise that I would fight for our kids and myself for benefits. When a soldier enlists, he gives our country a blank check for his life. My husband did just that.
Blessed,
Keri Anne
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Keri Anne, widow of Tom W. age 63; dx Myelodysplastic Syndrome 10/26/11; Rec. Aloe at Audie Murphy SA, TX 5/12; passed 10/23/12;.
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  #14  
Old Tue Feb 26, 2013, 08:53 AM
Marlene Marlene is offline
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Hi Keri,

You might want to look at this thread regarding Agent Orange and the VA. If you search this forum for it, it will bring up other threads.

http://forums.marrowforums.org/showt...t=agent+orange

Marlene
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. FE is down to 384.
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  #15  
Old Tue Feb 26, 2013, 12:12 PM
Neil Cuadra Neil Cuadra is offline
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Keri Anne,

Thanks for posting and offering support to others.

Dr. David Steensma wrote an excellent article about Vietnam vets, MDS, and Agent Orange exposure. It's at the MDS Beacon website.
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  #16  
Old Tue Mar 19, 2013, 08:39 PM
LoveRapheal1 LoveRapheal1 is offline
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Janire

Did your doctor tell you what a reasonable compatibility is? Also you have your age in your favor so that's a good thing. I wish you well.
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