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  #1  
Old Thu Sep 19, 2013, 01:30 AM
Heather8773 Heather8773 is offline
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Donor from over seas question?

Hi my husbands Drs are still being kinda vague (bc they are still unsure I guess) but they said they "think" his donor is from europ (I'm guessing Germany, my husbands family has a lot of German background) they were saying this will result in slightly higher risks. Anyone been told this?
Also they said they would be using fresh donor cells not frozen but that they would be flown in? Does that sound right?
I'm kinda wondering how they know they will be flown in but still unsure if the donor is over seas or in the U.S.A?
Any info is so appreciated!
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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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  #2  
Old Thu Sep 19, 2013, 07:28 AM
susanML susanML is offline
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Heather -

Hi - I had a call from a lady that had her transplant 3 yrs ago where I am gonna have mine. She told me that her two sisters did not match and her donor came from Germany. A 19 yr old girl, and the cells were flown back here and transplanted to her. She has had a wonderful response - also I have heard alot of donor cells come from Europe because it is a law there to give DNA when they get their drivers license (?) I have not heard that the risks were higher - your doctor knows where they are coming from but may not have been up on all the details at the time. They may have had a couple of choices and he may not have been sure which one they choose at the time. Just speculation but I would try not to worry I would be happy. :-)
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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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  #3  
Old Thu Sep 19, 2013, 02:03 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by Heather8773 View Post
Hi my husbands Drs are still being kinda vague (bc they are still unsure I guess) but they said they "think" his donor is from europ (I'm guessing Germany, my husbands family has a lot of German background) they were saying this will result in slightly higher risks. Anyone been told this?
Also they said they would be using fresh donor cells not frozen but that they would be flown in? Does that sound right?
I'm kinda wondering how they know they will be flown in but still unsure if the donor is over seas or in the U.S.A?
Any info is so appreciated!
Heather, What kind of SCT is your husband having? You mentioned radiation in another post. Is it a "mini" transplant? Did you ask your doctors why there would be slightly higher risks from a European donor?
Thanks, Steve
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  #4  
Old Thu Sep 19, 2013, 03:16 PM
vickij vickij is offline
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I had my stem cell transplant on June 24th. I was told that my donor was European male, and that's all I'm allowed to know for 1 year. I wasn't told anything about more risks because he was from Europe. It is true that the cells are flown in fresh. Mine didn't get to the airport until after 11 p.m. and were brought straight to the hospital.
Will be Praying for you & Ronald.
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  #5  
Old Fri Sep 20, 2013, 02:05 AM
Heather8773 Heather8773 is offline
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Susan thank you. Yes he had 3 potential matches (blessed) and at the time we asked she said she would have to double chk.

Steve no it is a full on transplant. total body radiation and chemo. They are waiting until he zeros out (about 7 days) then they will transplant. They were wanting the donor to give bmt (marrow) not sct but haven't told us which the donor agreed to. Unfortunately I wasn't at the appointment where they talked about risks of over seas donor but from what my mother in law remembers it is that in Eroupe there was a time period that some infections were present. Maybe Neil knows?
Vicki so good to hear from you I have been thinking about u a lot! Well same appointment I missed they talked about flying in the donor cells. I thought ins payed to bring the donor over!? That's what I was told when I joined the be the match registry to be a donor. So idk why the cells are being flown over and still wondering can they really not need to be frozen?his drs prefer them fresh so I do also
Vicki how are you doing now?
Praying for y'all
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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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  #6  
Old Fri Sep 20, 2013, 02:15 AM
Heather8773 Heather8773 is offline
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Susan thank you. Yes he had 3 potential matches (blessed) and at the time we asked she said she would have to double chk.

Steve no it is a full on transplant. total body radiation and chemo. They are waiting until he zeros out (about 7 days) then they will transplant. They were wanting the donor to give bmt (marrow) not sct but haven't told us which the donor agreed to. Unfortunately I wasn't at the appointment where they talked about risks of over seas donor but from what my mother in law remembers it is that in Eroupe there was a time period that some infections were present. Maybe Neil knows?
Vicki so good to hear from you I have been thinking about u a lot! Well same appointment I missed they talked about flying in the donor cells. I thought ins payed to bring the donor over!? That's what I was told when I joined the be the match registry to be a donor. So idk why the cells are being flown over and still wondering can they really not need to be frozen?
Vicki how are you doing now?
Praying for y'all
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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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  #7  
Old Sat Sep 21, 2013, 01:55 PM
sstewart09 sstewart09 is offline
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Overseas donor

Joe's donor is overseas, Poland. The only extra form he had to sign off on was the possibility of the donor being exposed to mad cow disease. It wasn't saying that she was, but I guess that's a risk. Our doc didn't discuss any additional risks with an overseas donor and didn't seem concerned about the meat issue either.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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  #8  
Old Sat Sep 21, 2013, 04:55 PM
Susan L Susan L is offline
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Donor

How awesome is that - from Poland-wow it just amazes me where these donors come from - mostly I hear is from overseas. Thats really something. How is Joe doing since the transplant?
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #9  
Old Sat Sep 21, 2013, 06:32 PM
sbk007 sbk007 is offline
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I wonder what Archie Bunker would do if he needed a BMT and found out afterwards he was now Polish..
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  #10  
Old Sat Sep 21, 2013, 08:18 PM
sstewart09 sstewart09 is offline
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He's doing well, thanks for asking! Counts are pretty much back to normal, back to work on day 120ish, we are truly blessed. The weird thing is about his donor is that Joe is everything but Polish so it was a real surprise! Hope we can meet her one day
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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  #11  
Old Sat Sep 21, 2013, 09:34 PM
Susan L Susan L is offline
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Polish donor

So glad he is doing well - back to work at 130 - dang I am amazed at all the differences in people - And not polish - isnt that something!!! Best wishes to you both.

sbk007- That is funny - Archie would be fighting with himself every minute hahaha

Best to all -
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Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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  #12  
Old Sun Sep 22, 2013, 01:10 PM
gramous gramous is offline
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Hello,

I come from Europa, and I can you assure that there are not more risk here than in the USA. A lot of infection's risk are check for blood and blood's products and the standard security for those products is very strict, for sure in Germany :-) (but also in the other countries in Europe: the law is common in Europe).
I wish you a lot of courage, friendly regards, béné
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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  #13  
Old Sun Sep 22, 2013, 01:26 PM
sbk007 sbk007 is offline
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Quote:
Originally Posted by sstewart09 View Post
He's doing well, thanks for asking! Counts are pretty much back to normal, back to work on day 120ish, we are truly blessed. The weird thing is about his donor is that Joe is everything but Polish so it was a real surprise! Hope we can meet her one day
Back to work in 4 months wow!! Congrats!!
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  #14  
Old Sun Sep 22, 2013, 02:42 PM
Heather8773 Heather8773 is offline
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Quote:
Originally Posted by sstewart09 View Post
Joe's donor is overseas, Poland. The only extra form he had to sign off on was the possibility of the donor being exposed to mad cow disease. It wasn't saying that she was, but I guess that's a risk. Our doc didn't discuss any additional risks with an overseas donor and didn't seem concerned about the meat issue either.

I think that sounds right bc his mom said it was not something that they thought anyone needed to be concerened about. And that it didn't mean his donor was exposed to anything.
I was just curious as I wasn't able to attend that visit and his mom was trying to fill me in on everything thx!
I'm so happy about Joe! I've been thinking about y'all!
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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 Sun Sep 22, 2013, 02:51 PM
Heather8773 Heather8773 is offline
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Quote:
Originally Posted by gramous View Post
Hello,

I come from Europa, and I can you assure that there are not more risk here than in the USA. A lot of infection's risk are check for blood and blood's products and the standard security for those products is very strict, for sure in Germany :-) (but also in the other countries in Europe: the law is common in Europe).
I wish you a lot of courage, friendly regards, béné
Bene thank you I'm not certain which country yet but I'm just guessing Germany. Im really excited and thankful they found a donor for him and that there is an international registry available!! I have been just curious about everyone's experience if they were told any of the things I posted.
I have been thinking a lot about how so manny donor come from Europe and been inspired by it. I wonder how many register here? (just literally curious)
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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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  #16  
Old Mon Sep 23, 2013, 12:40 PM
sbk007 sbk007 is offline
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20.5 million donors and 590,000 cord blood units.

From the bethematch webpage:

A patient's doctor can search our Be The Match to Registry and other registries worldwide to access more than 20.5 million donors and more than 590,000 cord blood units.

There may be other registries...Hope that helps.
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  #17  
Old Fri Oct 25, 2013, 07:59 PM
Jill2008 Jill2008 is offline
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My donor was a 48 year-old male from Germany. Unfortunately, I came down with a respiratory illness the day I was to be admitted and the stem cells had to be frozen because my donor wasn't able to go through the process again at that time. I was 100% donor following transplant though. I relapsed eight months later for whatever reason they do not know. I was able to contact my donor two years following transplant and we still keep in touch via e-mail. I thanked him for giving me another chance at life and told him how much it meant to me. He said if I was able to have another transplant, he would donate again. The guidelines have changed though and the maximum age for donors is 40. Many donors are European. From what I understand it is a very big deal over there. Best wishes!
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  #18  
Old Sun Oct 27, 2013, 01:30 AM
Heather8773 Heather8773 is offline
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Awe Jill thx for sharing. All donors from all country's are a blessing. I hope that the message of donating can save lives is spread to the country's w low donor numbers. I have been told your donor probably matches your background so if there are low donor numbers w a specific group that person in need will be less likely to find a match. My friends co worker has been waiting 8 yrs bc (she says) of that reason.
Im happy y'all still keep in touch. We re looking forward to that.
I hope that things start to improve again for you!
God bless
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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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  #19  
Old Sun Oct 27, 2013, 01:35 AM
Heather8773 Heather8773 is offline
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Ps.. They were not frozen I think I got someone to accidentally admit to Germany and it was Marrow (read back)
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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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  #20  
Old Sun Oct 27, 2013, 05:23 AM
Cheryl C Cheryl C is offline
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Jill - I'm interested in you saying the maximum age for donating marrow was 40. When I was programmed for a transplant here in Australia one of my brothers turned out to be compatible and was accepted as a donor. He was 65 at the time.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #21  
Old Mon Oct 28, 2013, 02:08 PM
Hopeful Hopeful is offline
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Originally Posted by Cheryl C View Post
Jill - I'm interested in you saying the maximum age for donating marrow was 40. When I was programmed for a transplant here in Australia one of my brothers turned out to be compatible and was accepted as a donor. He was 65 at the time.
Jill may have been referring to the recent change in the US where you can only join the reigstry for free if you are between 18 and 44 years old. If you are 45-60, you can still join the registry but will have to pay ~$100. I think this is because doctors prefer younger donors, and there is cost involved with putting people on the donor list.
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  #22  
Old Wed Oct 30, 2013, 12:49 AM
Cheryl C Cheryl C is offline
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Oh, OK.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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