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MDS Myelodysplastic syndromes

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  #1  
Old Fri May 9, 2014, 05:29 PM
rar rar is offline
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Why do only 5% opt for transplant?

My understanding is that a transplant is the only cure for MDS, and that other treatments are temporary at best. I have MDS-RAEB2 and will go for a transplant as soon as I have remission. I wonder why transplant rate is so low.

Ray

Last edited by rar : Sat May 10, 2014 at 08:52 PM.
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  #2  
Old Fri May 9, 2014, 05:41 PM
bailie bailie is offline
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Several reasons:

1) Other health problems that prevent the transplant.

2) Difficulty in finding a donor.

3) Cost .... they quoted me at $433,000.

4) Risk .... it is a roll of the dice and the stakes are high. It is a very difficult procedure for most people. Very few sail through it smoothly.
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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.
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  #3  
Old Fri May 9, 2014, 05:43 PM
riccd2001 riccd2001 is offline
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Good Question...

If you do a search for "transplant success rate" on this Site's search function, there's 29 threads that discuss the experiences of patients and caregivers. It may provide you with a better understanding. Other members will respond to you too.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #4  
Old Fri May 9, 2014, 08:31 PM
rar rar is offline
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Thanks for the response.

1. I am 73 and in good health.

2. I have 3 sisters who are 10 out of 10 matches, 3 brothers don't match.

3. I am told Medicare and supplement pay all medical costs.

4. This is the sticky one. In 6 months I went from 0 blasts to 13%. ANC went from 1.3 to .2. I was told at this rate of progression that with no action I had a median life span of 8 months. Any treatment is likely to have short term remission. If I get a transplant I have been told that there is a 20% chance of dying from it, 30% chance of it not working, and 50% chance of a cure. The odds of the transplant seem good to me. It will be a tough first year.

Ray

Quote:
Originally Posted by bailie View Post
Several reasons:

1) Other health problems that prevent the transplant.

2) Difficulty in finding a donor.

3) Cost .... they quoted me at $433,000.

4) Risk .... it is a roll of the dice and the stakes are high. It is a very difficult procedure for most people. Very few sail through it smoothly.
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  #5  
Old Fri May 9, 2014, 09:34 PM
bailie bailie is offline
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I am curious about the sisters match? Are they considerably younger than you?
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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.
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  #6  
Old Fri May 9, 2014, 10:30 PM
Whizbang Whizbang is offline
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rar,

I've been told that if any of your sisters 'Didn't' have children (everything else being equal) that they are the better match... Pregnancy/Child birth creates certain antibodies that aren't beneficial to SCT...

Also being in complete remission (after pre SCT chemo) will help your odds with relapse, and with the SCT in general...

SCT is all about the odds, and extending life expectancy, and 8 months is not a long time...

I wish the best for you and your SCT, may everything work out to the fullest (best) outcome... God Bless...
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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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  #7  
Old Sat May 10, 2014, 07:01 AM
Birgitta-A Birgitta-A is offline
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SCT

Hi Ray,
You know I was 67 yo at dx with low risk MDS 2006. I looked at the result for SCT and decided that I didn't dare to try a SCT. At that time they didn't transplant patients older than 65 in Sweden and not low risk patients so I really didn't have to choose. Now fit high risk patients 70-75 yo can get a SCT.

As far as I understand about 60% survive the first year and 50% of the survivers don't have GVHD.

After 8 years with supportive therapy, Thalidomide/Revlimid I have good quality of life. When the researchers compare the situation for low risk SCT patients with patients that didn't get a SCT they don't recommend SCT for this patient group.
Kind regards
Birgitta-A
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  #8  
Old Sat May 10, 2014, 12:35 PM
rar rar is offline
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If I had low risk MDS I would not be seeking a SCT. On the IPSS-R scale mine comes out at very high risk, altogether different betting odds. Your figure of $433K seems high, casual conversation with my doctors say more like $250K. Insurance typically settles at 1/3 to 1/2 of that. I thought Sweden had good public health insurance.

These days mini transplants are done on patients well up into their 80's if they are in good health. There does not seem like much of a difference in survival rates. The curves seem to say if you survive the first year you stand a good chance of having a near normal survival. 60% survival rate odds beats 0%.

My sisters are 66 to 78. The two younger ones had children, the older one is a cancer survivor in frail health. All else being equal my youngest sister seems to be the better donor. She had one child. My doctors seem to downplay the difference between male and female donors. My brothers range from 56 to 76. It is too bad that my baby brother was not a match.

I am currently on a clinical trial for AG221 which is supposed to suppress the 2HG metabolite that is produced by a mutant IDH2 gene. Early results showed partial or complete remission in 6 out of 7. Onr theory is that mutant gene is what caused my rapid MDS progression.
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  #9  
Old Sun May 11, 2014, 05:02 AM
Cheryl C Cheryl C is offline
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When considering SCT or BMT I understand it is wise to look at the 3 year survival statistics rather than just 12 months. Sometimes GVHD doesn't manifest itself until 2-3 years after transplant.

All the best with whatever decision you make!
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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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  #10  
Old Sun May 11, 2014, 06:12 AM
Birgitta-A Birgitta-A is offline
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SCT

Hi Ray,
Yes it is true that we pay very high taxes and that all kinds of treatment is almost free.

I pay 180 USdollar for drugs/year. On of the Revlimid caps I take every day 3 week of 4 costs 200 dollar.

Then I pay 180 dollar/year for all kind of treatment including txs and hospital care. A SCT should not cost me anything extra since I very soon get a "freecard" for treatment.
Kind regards
Birgitta-A
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  #11  
Old Sun May 11, 2014, 02:42 PM
sbk007 sbk007 is offline
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Ray, To answer your question about 5 % I'm assuming your talking MDS patients. I think 75 % of the people diagnosed with MDS don't have high risk so that leaves 25 %, of that 25 % 80 % or so are age 60 or above.
Age group eligibility has been extended to allow 70-80 year olds but that wasn't always the case and health is an issue for some. Forget about the money aspect especially if medicare is picking up the tab. If your odds are good you trust the team, and you want to do it then go with your 100% match sibling. That is something you can't put a price on regardless of age or gender its still a 100% sibling match.
All the best and thanks for participating in the clinical trial.
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  #12  
Old Wed May 14, 2014, 04:59 AM
Cheryl C Cheryl C is offline
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This is a good article to read when considering whether to have a SCT:

http://www.sciencedaily.com/releases...0624173242.htm
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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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  #13  
Old Wed May 14, 2014, 07:27 PM
sbk007 sbk007 is offline
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That article makes no sense to me and I can't understand how such a prestigious group would perform BMT's at all for those over 60 given those findings. When I first read it a few months ago I thought it was from 1999. If the net benefit for low risk is -36 months(negative 36) or whatever and the net benefit for high risk is 8 months then why subject someone to the recovery process of a BMT. How many people would knowingly go through the BMT, the recovery to buy 8 months?
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  #14  
Old Fri May 16, 2014, 06:28 AM
Birgitta-A Birgitta-A is offline
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SCT

Hi sbk007,
The patients hope to belong to the group that are cured after the SCT.
Kind regards
Birgitta-A
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  #15  
Old Fri May 16, 2014, 11:27 AM
sbk007 sbk007 is offline
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Hi Birgitta, The way I read that paper it sounds like there is not a group in that range that get cured. The Average is 36 months compared to the group that didn't have transplant which is 28 months. This is why I don't understand the publication. There is no conclusion section just the statistics.
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  #16  
Old Fri May 16, 2014, 05:09 PM
Birgitta-A Birgitta-A is offline
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SCT

Hi sbk007,
Yes even if we look at the original abstract they never mention the cured patients: http://jco.ascopubs.org/content/31/21/2662 .

If you read the original article and not only the abstract I am sure that they will report about the cured patients - probably about 25%.
Kind regards
Birgitta-A
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  #17  
Old Sat May 17, 2014, 02:20 AM
DanL DanL is offline
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Here is an article that demonstrates the importance of 2 year survival after HCT. It is not specific to MDS, but MDS and AML are two of the blood cancers covered in the study. There are a few charts that do break down by disease after reviewing the article further.

http://www.ncbi.nlm.nih.gov/pubmed/21464398

Seems to point to an 80% return to normal life expectancy for MDS once the first two years are out of the way, which I think is pretty encouraging. Primary issues after two years - Relapse 9%, and non-relapse (probably includes GVHD along with other health and age related issues) 12%.
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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. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #18  
Old Sat May 17, 2014, 11:53 AM
sbk007 sbk007 is offline
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DanL, Glad to see you posting and I hope your feeling better.
I read this paper a few months ago and its very encouraging. Seems after 2 years the probability of reaching 10 years is around 85%, after 10 years life expectancy returns to normal. Those studies were for patients receiving transplants prior to 2004 so with todays advancements you might see even better results. and as time goes on more advancements in medicine will increase those odds. The study done for the 60-70 age group is for non-myoblative conditioning and isn't as clear with the results as this one.
Take Care and get well soon! - Steve
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  #19  
Old Sat May 17, 2014, 07:45 PM
rar rar is offline
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Quote:
Originally Posted by sbk007 View Post
Hi Birgitta, The way I read that paper it sounds like there is not a group in that range that get cured. The Average is 36 months compared to the group that didn't have transplant which is 28 months. This is why I don't understand the publication. There is no conclusion section just the statistics.
The report lumps together too many groups. I am in the IPSS-R category of very high risk with a median life expectancy of 9.6 months, and who knows when the clock started ticking. So 36 months with a transplant doesn't look that bad. And there is the hope that I will be among the 25 to 50% who live a near normal life span. The difference is not always 6 months as implied. Two weeks into the AG221 clinical trial with no change so far. They were not expecting results this quickly.

Ray
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  #20  
Old Sun May 18, 2014, 06:52 AM
Birgitta-A Birgitta-A is offline
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Ag-221

Hi Ray,
Very interesting with a new drug! I do hope you will respond!
http://www.ascopost.com/issues/may-1...-syndrome.aspx
Kind regards
Birgitta-A
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  #21  
Old Sun May 18, 2014, 03:26 PM
Caregive Caregive is offline
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For all the negative news we get regarding health issues, read too many newspapers, there are dedicated doctors around the world who are working on treating these blood diseases and thank God for that. Thanks for posting that article.
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  #22  
Old Sun May 18, 2014, 06:34 PM
Whizbang Whizbang is offline
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Awesome news... I met a 30 year old at MSK, who had AML 88% blasts and 235,000 WBC count, he was lucky enough to get into the AC-220 study over a year ago.... there rounds of chemo had failed before that (no response)... 2 - 3 weeks on AC-220, and near complete remission with 11% blasts.... 13 months later he's doing great!!!
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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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  #23  
Old Sun May 18, 2014, 10:08 PM
rar rar is offline
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Here is overall MDS survival data from the VA.

Outcome of patients with myelodysplastic syndromes in the Veterans Administration population.

RESULTS:A total of 2242 MDS cases were registered during the period analyzed. The median overall survival (OS) was 2.1 years, but varied by French-American-British category. Median OS for patients with RA, RARS and RAEB was 3.4, 4.9, and 0.7 years, respectively.

The type of MDS makes a difference in OS.

I did go to the VA for an opinion on my MDS. Bottom line they told me they have one transplant center with a long waiting list and I would probably be dead before my number for a transplant came up. Fortunately I have other insurance.
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  #24  
Old Sat Jun 7, 2014, 08:29 AM
writer writer is offline
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I want a bone marrow transplant!

Although I was newly diagnosed this year (I'm 53), I've lived all my life with "my" variety of MDS.

Doctors kept ignoring my symptoms and lab results or calling them something else. I've been told I'm just plain lazy (as a child) or that I'm depressed (teenage and beyond) because I never had any energy.

I kept wanting to know what was wrong with me but no doctor ever saw it as anything worth going after. One doctor did do a b12/Folate study to poke at my elevated MCV result. But, when it came back normal he just took an "oh well" position. Then, I volunteered for a clinical trial at Mayo Clinic for an overactive bladder.

I had a pre procedure CBC. When the urologist saw the result he dropped everything and called the Heme/Onc doctor himself to ask him to get me in "today as a courtesy to him". He handed me over to the Heme/Onc department THAT DAY and I was having a bone marrow drawn by the end of the week.

However, my Heme/Onc doctor (different one) is hesitant to even discuss or suggest we do a bone marrow transplant because I have lived so long with it ... but I'm going to push him as hard as I can for it.

First, I don't want to continue to live like this with no energy. The only cell line impacted in my MDS is the red cell line - which is very uncommon. I have great immunity but now my chronic anemia has become transfusion deendent. I've always wanted to jog or run! I have a hard time getting up and down now - I consider I'm only 53 now and can only imagine what it will be like when I'm older.

Second, my anemia is macrocytic. This has resulted in tinnitus - which I've had all my life. When I started with the transfusions the tinnitus became softer - which I attribute to the smaller RBC's going through my ear vessels. As the transfused cells die off the tinnitus once again increases. It's maddening to have it soften then come back in spades!

Macrocytic anemia is also know for causing dementia like symptoms as you get older. I'd rather take my 50/50 chance of a cure vs. death than take the same chance of ending up like that.

Beyond transfusion or a BM transplant there isn't anything out there for me.
My erythropoetin is off the scale high and my iron levels are just below "overload" levels - getting higher with each transfusion. None of the drugs available work on what I'm missing.

So that is me - I'm sure the 50/50 chance of survival beyond 3 years doesn't appeal to everyone but I'd rather be dead than know what I'm going into from here without it.
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  #25  
Old Sat Jun 7, 2014, 03:48 PM
Birgitta-A Birgitta-A is offline
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RA

Hi writer,
As far as I understand you have RA (Refractory Anemia) that accounts for 20% to 30% of all patients with MDS. http://www.cancer.gov/cancertopics/p...essional/page2

Since your erythropoetin is high EPO drugs won't have any effect as you wrote.

How high is your ferritin value? Most doctors start to give chelating drugs like Exjade when the ferritin level is more than 1000 - this is very important if the patient is going to get a SCT.

Can't you go to one of the Centers of Excellence in Florida (Mayo or Moffitt) and discuss with a real specialist in SCT?
http://www.marrowforums.org/resource...ransplantation
Kind regards
Birgitta-A
75 yo, cx MDS Interm-1 2006. Now taking Revlimid with positive effect.
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