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MDS Myelodysplastic syndromes

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Old Wed Feb 20, 2013, 10:37 AM
AngieA AngieA is offline
Join Date: Sep 2012
Location: Decatur GA
Posts: 15
Upcoming BMT

My husband was diagnosed in May 2012. Although he had been very sick for about a year and a half before MDS was confirmed. He has had 10 dacagen treatments with a little improvement. He is still transfusion depedent for RBC although not as frequent in the beginning, his white cell count stays below 1.0 however is platelets stay pretty good. He's only had one platelet transfusion.

The hematologist started talking BMT in January. We saw the transplant doctor in February and they already found 4 donors. One of which is willing to complete the process and is rated a 9.5 match which I gather is very good. They want to schedule the transplant near the end of March. We were orginally told this process takes about 6 months. Don't get me wrong, I am very glad they found a donor so quickly, and that donor is willing to do this for a person they don't even know, but it made my heart stop when we got that call. It scares me to death! My husband was a little hesitant, but has accepted the idea and even anxious to get on with it.

I was wondering why so many people here that have had this disease for several years have not had a BMT. Just curious if this is an option to most and because of the high risk factor people mostly decided not to do it. The doc said there was a 40% mortality rate in the first year after the BMT. Very scary to the both of us.
Angie, wife to Bill age 65; Diagnosed MDS May 2012; Post mini MUDD almost 2 years. Has some GVHD in mouth, otherwise doing well.
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Old Wed Feb 20, 2013, 10:57 AM
TammyB TammyB is offline
Join Date: Jan 2013
Location: Winnipeg
Posts: 11
I am not sure where you are, but in Manitoba you have to wait until you have tried all other meds if any. I was told only 2 MDS patients a year get transplants here. Age is also a factor, after the age of 70 they do not do them as a rule here. I was diagnosed in Oct 2008 and I am just now in the process of getting that started. I actually see the Dr later today and hope I will know more.
Tammy, age 50; Diagnosed MDS Deletion 5Q- in 2008;
Currently on Lenalidomide.
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Old Wed Feb 20, 2013, 11:27 AM
Calimom Calimom is offline
Join Date: Feb 2013
Location: Los Angeles, California
Posts: 6
My mother has had MDS for 5 years. Because of her age she is can't get a BMT (she was 75 when she was diagnosed). Since then they've watched her numbers carefully and she's gotten Procrit/Aranesp injections. Today she has her second blood transfusion in two months.

Congrats on finding a match! Until this disease hit I'd never thought much about marrow donors or blood donors!
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Old Wed Feb 20, 2013, 08:43 PM
MDSPerth MDSPerth is offline
Join Date: Sep 2012
Location: Perth, Western Australia
Posts: 74
Besides age, my understanding is it could also have something to do with the patients IPSS score which is broken into Low, Intermediate 1, Intermediate 2 and High. It is not the general treatment for MDS patients who fit into the Low and Intermediate 1 category, because their life expectancy out weighs the risks one takes with transplant. However, patients with Intermediate 2 and High have a lower life expectancy and therefore it is considered that the risks involved in transplant may give them a better prognosis.

Do you know what your husbands IPSS score is?
Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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Old Wed Feb 20, 2013, 10:18 PM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Yes MDSPerth - that is my understanding too. I was Intermediate 2 to start and it was all systems go for a transplant, but when my blast cells dropped spontaneously putting me into Intermediate 1 it was no longer an option.
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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Old Wed Feb 20, 2013, 11:57 PM
Momhope Momhope is offline
Join Date: Sep 2012
Location: Hollywood,florida
Posts: 27
how did they drop? did you did something to made your blast count drop?
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Old Thu Feb 21, 2013, 12:07 AM
Momhope Momhope is offline
Join Date: Sep 2012
Location: Hollywood,florida
Posts: 27

we are in the same situatiin, my mom is hig risk and eventhough she looks great here only option right now is to have BMT we just saw a second transplant Dr today and he told us that the only way my mom can leave 5years from now is by having a BMT ,he also give us the same survivor % and that she will be in a lot of heavy med after transplat.. he did say that there is a lot of risk with BMT but without it my mom could only leave for 12months.. so in a situation like this you decide. on the one that give the better chance eventhough the % is low.
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Old Thu Feb 21, 2013, 12:33 AM
milliken2 milliken2 is offline
Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
BMT also depends on your other co-morbiities

My husband was not a candidate for a BMT first of all because of his age - 66 - and also because he had other co-morbidities working against him. He had 2 other auto-immune diseases - Antiphospholipid Antibody Syndrome and Leukocytoclastic Vasculitis. We were actually told by Dr. Mikkahl Sekeres at the Cleveland Clinic that his MDS might have been a result of two of the meds he was taking - one from each disease. But the damage was already done.
The preparation leading up to a BMT is difficult at best - and your entire immune system has to be destroyed so that the new marrow will make its own. But I do know this - if Earl had been able to have a BMT - I would have stood by him and encouraged him to do it. Ultimately - it is your husband's choice alone. Good Luck to both of you - whichever road you take.

Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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Old Sat Feb 23, 2013, 03:38 AM
SLB SLB is offline
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
I agree that it blows my mind someone out there is willing to do this so you can live. I understand the fear, very much a constant worry for me at the moment heading into my transplant scheduled for 6th of March. However definitely go for transplant before mds transforms to aml. I am interested in mortality rates they quoted in Australia I was told 20% die, 40% relapse & 40% cured with potential GVHD. Last percentage I was told was 20-30% mortality before the dr said "sign here to waver liability". Good luck with your decision. However I guess in scheme of things still better than 100% chance of not seeing the year out.
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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Old Tue Feb 26, 2013, 10:23 PM
kris kris is offline
Join Date: Feb 2010
Location: AL
Posts: 50
Transplant or not?

First, as a wife and caregiver I know the road you are traveling. Take care of yourself.
Second every MDS patient is different, the course of their disease is different and the decisions are made for different reasons.
My husband was at DX 2006, supportive care for 2 yrs, and then Vidaza whiched worked for him for 2 yrs. When it stopped working it was as if the electricity had been turned off. He started a spiral down hill. There were no clinical trials, no other drugs just transfusions. Luckily he had 2 siblings that were a match. He had a GI bleed and fungal lung infection the month prior to transplant. Transplant was delayed till the infection was controlled. He was under weight, weak but his mind was determined to push through. He ate even when he didn't want to, nor had the energy to lift a fork. He walked when all he wanted to do was stay in bed. He followed every order, took every medication and endured my incessant reminders that this too shall pass. That was 16 months ago. Today he excercises at the gym and my husband has returned. Full of life, joy and eager for adventure. No, it wasn't an easy path. The alternative.... plan a funeral. Yes, he entered the hospital with affairs in order. Yes, the odds in Vegas are better. When you have everything to gain and nothing to loose it is time to go for it. Survival is a wonderful instinct. It is not one day your sick then your well. It is a years journey to get back to normal. I am so grateful to the Dr, medical team, nurses, his sister/donor but most of all his spirit. I am grateful for these months together.
This is why he decided to go to transplant, (allogenic stem cell/sister).

Our best to you and your family.
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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