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MDS Myelodysplastic syndromes

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  #1  
Old Tue Jul 23, 2013, 09:20 AM
mdsSUCKS mdsSUCKS is offline
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5/10 Family member transplant donor

Good Morning,

My dad was diagnosed with MDS in August of 2012. He has tried Vidaza and Revlimid and neither worked for him. They have been searching for a donor, and they havent yet found a 10/10 match. Now the hospital called me yesterday and told me that a 5/10 family member match can sometimes be as good as a 10/10 unrelated match.

Has anyone ever heard of this before?

Thanks
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  #2  
Old Tue Jul 23, 2013, 12:05 PM
Neil Cuadra Neil Cuadra is offline
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Yes, a half-match is called a "haplo-identical match". Chances are that 25% of a patient's siblings will be exact matches and another 50% will be haplo-identical matches. A patient's parents will be haplo-identical too; that's most relevant for pediatric patients. Other family members, such as aunts and uncles, can occasionally turn out to be haplo-identical matches too.

A 5-of-10 matched transplant is less ideal than a 10-of-10 matched transplant, but can still be successful. Unfortunately, you have limited choices and none are ideal. Have they told you that your dad has a 5-of-10 match or just that they will be checking for such a match?

The National Institutes of Health is experimenting with ways to make haplo-identical matches more successful, including using both the donor cells and a cord blood unit, but so far they are testing this procedure only with adolescents and younger patients.

Has the doctor suggested Dacogen (decitabine), another demethylating agent like Vidaza?
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  #3  
Old Wed Jul 24, 2013, 11:19 AM
DanL DanL is offline
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Johns Hopkins seems to be leading the charge in this research. I have attached an article on the use of haploidentical transplants that were completed a couple of years ago. The results have been pretty good. This study used cord blood and marrow that weren't perfect matches.

http://www.hopkinsmedicine.org/news/...pool_of_donors

The results were comparable to good matches, and half of the patients were over 50. There are sevearl other articles about this process and study.
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #4  
Old Wed Jul 24, 2013, 01:37 PM
Marlene Marlene is offline
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I echo Dan's comments. They've had some good success in greatly reducing GVHD which is a big problem in these types of transplants.
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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. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #5  
Old Mon Aug 5, 2013, 10:07 AM
mdsSUCKS mdsSUCKS is offline
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Thanks for the info everyone.

Turns out at this time I cannot donate to my dad. I am a 50% match, but there is something else they look for to be a mismatch and unfortunately I am a match to my dad. Does anyone know exactly what that is? I know I didnt give too much info, but as the nurse was telling me on the phone it all happened so fast I didnt ask her any questions.

Maybe a certain gene or something? I turned out to be a match in whatever they were looking for, now I'm worried I might get it or my kids will be diagnosed with a blood disorder down the line.

Any info will help.

Thanks
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  #6  
Old Tue Aug 6, 2013, 09:26 PM
curlygirl curlygirl is offline
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Hi! I'm sorry I can't help, but if you haven't gotten to talk to the nurse or doctor again, or if they explained it in a way that you don't understand, I wanted to suggest that sometimes the hospital social workers are a good source of information. They may be able to translate medical speak into regular english for you better. They've done that for me before. Good luck to you and your father!

Last edited by curlygirl : Wed Aug 7, 2013 at 08:48 AM.
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  #7  
Old Thu Aug 22, 2013, 10:42 AM
mdsSUCKS mdsSUCKS is offline
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They found a 9/10 match for my dad and I think he is going to go ahead with the transplant before things get any worse. Do 9/10 matches generally work? I'm very scared, as you can all imagine
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  #8  
Old Thu Aug 22, 2013, 10:47 AM
susanML susanML is offline
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found a match

Congratulations for the match - 9/10 sounds pretty good to me - so happy for you and your dad!!!!!
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #9  
Old Thu Aug 22, 2013, 01:24 PM
DanL DanL is offline
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The 9/10 match is a good match, depending on where the mismatch is. The location of the mismatch determines how it could be more or less significant to the transplant. The primary challenge with 9/10 is that the likelihood of GVHD is a little higher, and sometimes engraftment is a little more difficult than a 10/10 match. That being stated, I believe that it is considered a better choice than a haploid 5/10 match.
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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. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #10  
Old Thu Aug 22, 2013, 01:33 PM
evansmom evansmom is offline
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My son had a completely successful unrelated BMT with a 9/10 match. The mismatch is better to be on the DQB1 or DRB1, as opposed to the A, B or C loci. Evan's was on DQB1.

Best wishes.
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Nicole, mom to Evan (19); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #11  
Old Fri Aug 23, 2013, 01:12 PM
mdsSUCKS mdsSUCKS is offline
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Thanks for the great replies and well wishes everyone. I will defintiely keep you posted on my dads journey. This site has been wonderful for myself and my family over this past year so I just want to say thank you to everyone here for being such a great community.
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  #12  
Old Fri Sep 20, 2013, 02:46 PM
mdsSUCKS mdsSUCKS is offline
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My dad should be getting his transplant soon (hopefully). He went to the dentist yesterday and he needs to have 2 teeth pulled. Is that something he is able to do considering his blood levels are so low? Does this interfere with his transplant, will he still be able to go through with it?

Thanks in advance for the responses.
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  #13  
Old Fri Sep 20, 2013, 10:57 PM
Heather8773 Heather8773 is offline
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My husband had some teeth pulled and redone before his upcoming transplant. He went to a dentist the transplant team recommended (as he was used to pts w low counts) and he was given platelets the day before. (his platelets sit around 28 normally ) They transfuse him at 9 but just to be safe)
It is important to have dental work done before transplant to deal w any
Bacteria/decay. So no worries! Sounds like he's in good hands
I met a woman on bmtsupport.org last night who had a sibling half match in her 40's in 2011. She is doing very well and no GVHD! This seems to be newer technology so it's an other reason to believe he is at a great place!
Best of luck!
Heather
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #14  
Old Fri Sep 20, 2013, 11:10 PM
Heather8773 Heather8773 is offline
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Just thinking is his dentist well experienced w pts low counts?
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
Now no PNH or AA. Mixed Chimerisim
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  #15  
Old Mon Oct 14, 2013, 12:49 PM
mdsSUCKS mdsSUCKS is offline
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Hi everyone, my dad got the call that, if everything goes as planned, he will be admitted to the hospital on October 23rd to start the transplant process.

I have a question, what happens if the transplant does not work? Is that the end of the road?? Sorry if thats a silly question, I am just feeling a little down/sad/worried.

Thanks again for all the info.
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  #16  
Old Mon Oct 14, 2013, 04:02 PM
Whizbang Whizbang is offline
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Most transplant centers / hospitals will do the transplant at least a second time if the 1st one doesn't take... Some will even do three, but that's probably the extent of it... And this is all dependent on the donor willing to give a second / third time...

There is not much time available in between transplants (I believe), as you will be very suseptible to various infections...

Quote:
Originally Posted by mdsSUCKS View Post
Hi everyone, my dad got the call that, if everything goes as planned, he will be admitted to the hospital on October 23rd to start the transplant process.

I have a question, what happens if the transplant does not work? Is that the end of the road?? Sorry if thats a silly question, I am just feeling a little down/sad/worried.

Thanks again for all the info.
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #17  
Old Mon Oct 14, 2013, 07:38 PM
DebS DebS is offline
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My husband is at Day +6. He is having his issues but is doing well all things considered.

One of his "buddies" on the floor is in for his second transplant. He had AML and had a transplant a few years ago. Then relapsed. He had umbilical cord cells two weeks ago and is going home tomorrow!!!!

Soooooo, there are LOTS of things that they can do. The first thing you can do is stay positive and NEVER give up hope!

Good luck!
Deb
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  #18  
Old Tue Oct 15, 2013, 06:43 AM
susanML susanML is offline
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Deb

Hi Deb - So happy for the news that Doug continues to go well. Does he get to go home after awhile or does he stay close by for a number of days. When I have my transplant (hoping soon) I have to stay at a lodge for patients because I will be going back and forth for treatment daily. Just curious how it works in other areas. Keep up the good work!!!
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #19  
Old Mon Oct 21, 2013, 09:58 AM
mdsSUCKS mdsSUCKS is offline
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Dad was going through pre-admission tests and it has now been determined MDS has turned into AML. He will be starting chemo today, and hopefully if everything works out with that he can get the transplant in about 4-6 weeks.

Any prayers would be appreciated.

Thanks to all.
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  #20  
Old Mon Oct 21, 2013, 02:17 PM
susanML susanML is offline
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Mds Sucks

Quote:
Originally Posted by mdsSUCKS View Post
Dad was going through pre-admission tests and it has now been determined MDS has turned into AML. He will be starting chemo today, and hopefully if everything works out with that he can get the transplant in about 4-6 weeks.

Any prayers would be appreciated.

Thanks to all.
hI - And it sure does. I am sorry that it turned to AML but atleast he is in the right place at the right time for getting help and then the transplant. Hang in there with him - there will be alot of ups and down but help him fight this. Prayers are on their way.
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MDS RAEB 2 w/excess blasts - 3+ Fibrosis - previous treatments ATG, Vidaza, Dacogen and Rituxan. Waiting to find my match - Susan
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  #21  
Old Mon Feb 24, 2014, 12:58 PM
mdsSUCKS mdsSUCKS is offline
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Question - Need Help

Hey everyone,

My dad is on day 39 and things have been going ok. A few hiccups along the way but he is still fighting strong.

I have one question..The hospital took a test of "his blood vs the donor blood" and it came out to about 40%, now the doctor said it should be a little higher. Can someone explain to me what this is? Should we be concerned the transplant is not working?

Thanks
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