Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Sat Mar 11, 2017, 01:14 PM
babyking babyking is offline
Member
 
Join Date: Mar 2017
Location: Hubert, NC
Posts: 5
marrow transplant?

I'm 68 and have a slightly low wbc. I'm not being treated at this time for anything and seem to be in perfect health. Many years ago my brother died of leukemia after I donated marrow. His death was horrific. It could not have been worse. I wonder, at my age, if I'm a candidate for a transplant. I remember hearing that transplants for old people don't work and that there are few success stories in general for old people and marrow disease. Your thoughts?
__________________
Watchful waiting now for about 2 years. My wbc count is low but just below the normal count. My younger brother died of leukemia, post bone marrow transplant, about 30 years ago.
Reply With Quote
  #2  
Old Sat Mar 11, 2017, 03:57 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,334
babyking,

Because you are in good health overall and assuming there was an ideally matched donor, then you might be a candidate for a transplant (possibly a "mini-transplant") if you had a disease that a transplant could cure. But that doesn't seem to be the case.

I'm unclear why you are asking this question. If you are wondering what would happen if you developed leukemia as your brother did, it would be very different circumstances because of your different ages and likely your other health circumstances, so it's hard to make guesses about the treatment.

Leukemia isn't directly hereditary, although there are some known genetic conditions that increase the risk of leukemia. A history of common environmental exposures could be a possible concern, if there's a possibly that your brother's disease resulted from toxic exposures. If I was in your circumstances, I'd want to understand my risk level but I wouldn't worry that there's a proverbial sword hanging over my head.
Reply With Quote
  #3  
Old Sat Mar 11, 2017, 08:12 PM
babyking babyking is offline
Member
 
Join Date: Mar 2017
Location: Hubert, NC
Posts: 5
My doctor is monitoring my border line low wbc. They are just outside the normal range. She said that she is watching for MDS.
__________________
Watchful waiting now for about 2 years. My wbc count is low but just below the normal count. My younger brother died of leukemia, post bone marrow transplant, about 30 years ago.
Reply With Quote
  #4  
Old Sat Mar 11, 2017, 10:12 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Has your doctor mentioned transplant (probably not). If transplant is in the future, keep one thing in mind ... go into the transplant in the best health possible. I was 68 when I had my stem cell transplant (SCT).
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
Reply With Quote
  #5  
Old Wed Mar 15, 2017, 12:55 PM
babyking babyking is offline
Member
 
Join Date: Mar 2017
Location: Hubert, NC
Posts: 5
were did you get your donated marrow? did you have to pay for it? I was a bm donor. while my brother, the recipient, received much financial assistance, I had to pay for everything including my housing and transportation while I was there. I had to donate platlets every day for at least a week. He died a horrible death even though the marrow had taken root. I'm not enthusiastic about being a recipient and don't know of anyone who would care to go through all that.
__________________
Watchful waiting now for about 2 years. My wbc count is low but just below the normal count. My younger brother died of leukemia, post bone marrow transplant, about 30 years ago.
Reply With Quote
  #6  
Old Wed Mar 15, 2017, 01:34 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
My donor was a 20 year old male from Germany. The process for donating stem cells (from the blood) is considerably less of a problem than donating cells derived from the marrow. I am not sure but I don't think there was any cost for the donor.

You have mentioned twice, "he died a horrible death". I understand it might be difficult to explain and feel free to ignore. What were the complications for your brother? Was the transplant successful for a period of time? Did he have other health problems beside leukemia? What kind of leukemia did he have? Was it decided that his death was caused by the transplant or the persistence of the leukemia? He must have been in a serious condition before they tried the last resort of the transplant.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
Reply With Quote
  #7  
Old Thu Mar 16, 2017, 06:56 AM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 779
Hi Babyking

I'm wondering why you are considering a transplant with all the possible ramifications if you don't have leukaemia, you feel well, your white cells are not much below normal and your other cells are OK. Are you getting numerous infections?

My WCC has averaged around 1.5-1.8 for about 12 years now, and I live a normal life apart from the 4-weekly IVIg infusions which help my immune system. I treat any infections promptly, and wouldn't dream of having a transplant unless my blast count rose above normal levels again. My haematologist wouldn't support me having one either.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
Reply With Quote
  #8  
Old Sat Mar 18, 2017, 08:04 PM
babyking babyking is offline
Member
 
Join Date: Mar 2017
Location: Hubert, NC
Posts: 5
my brother was put into remission for 5 years and then the leukemia came back. I was the donor. I don't recall the exact type of leukemia. i'm asking about a transplant because I'm looking ahead to see what I might have to face. I was wanting to know how the donor is compensated for the donation. my brother was given the bone marrow and the marrow was accepted and was taking hold and producing as it should. as I understand it, he was given too much radiation. I never saw him conscious after the transplant. he was restrained, on pain meds and finally put into a comma or paralyzed. i'm worried about my future.
__________________
Watchful waiting now for about 2 years. My wbc count is low but just below the normal count. My younger brother died of leukemia, post bone marrow transplant, about 30 years ago.
Reply With Quote
  #9  
Old Tue Mar 21, 2017, 11:52 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 779
Hi Babyking

I've only ever heard of bone marrow being donated, no charge to either party, though of course the procedure itself can cost a lot of money if you don't have coverage of any kind.

I understand your concern about transplants in the circumstances. These are high risk procedures. Not everyone can handle the level of radiation/chemo required. When I was coming up for a transplant, I went through numerous medical tests to determine if my body would be able to cope with it. Though I was cleared for transplant, fortunately I didn't have to go ahead because my blast count dropped.

Unfortunately chemotherapy and radiation can cause MDS, so it's possible that it or another type of leukaemia can return even after what appears to be a successful transplant. It's a big decision to make and I would encourage you not to worry about it provided your counts remain stable, or even better, improve!

Have you had a consultation with a haematologist?
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
Reply With Quote
  #10  
Old Mon Mar 27, 2017, 04:50 PM
babyking babyking is offline
Member
 
Join Date: Mar 2017
Location: Hubert, NC
Posts: 5
I have not seen a specialist. During my last visit with my oncologist, she decided to take a gene panel to get a more definitive answer that my marrow is ok. I will get the results tomorrow. She said that since I've been monitoring my condition for several years I will probably die from something else.
__________________
Watchful waiting now for about 2 years. My wbc count is low but just below the normal count. My younger brother died of leukemia, post bone marrow transplant, about 30 years ago.
Reply With Quote
  #11  
Old Mon Mar 27, 2017, 09:31 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 779
Please let us know how you go with your gene panel.
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 4-6-weekly. BMB Feb 2014 - no blast transformation. 2017 still stable.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Bone marrow transplant statistics? Cheryl C Transplants 4 Mon Jan 16, 2012 09:45 AM
NMDP Provides Transplant Information Marrowforums News and Events 1 Tue May 8, 2007 04:00 AM


All times are GMT -4. The time now is 01:38 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2016 Marrowforums.org