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rar
ParticipantHi Grifty50, When I had my transplant I was told if I made it to day 90 I would continue to improve. Day 91 was the start of a 2 month hospital stay. I was told that many people feel better after a year which was when my chronic GVHD started. Then the magic date was pushed out to 3 years, then 5, now you say it is 8 years. Only 3 more to go.
Hold out hope, I have a few good days when I am almost normal. You will also. I listen patiently.
Ray
ParticipantWelcome to the club. I have had GVHD for 5 years. My team say they have nothing else to try. My problems include eyes, throt, mouth, fatigue, anemia, swallowing, dizziness, ect. I am willing to listen and offer my opinion.
Ray
ParticipantMedicare is good in any state. Supplement plans usually cover a small area.
ParticipantI would disagree about being too old to be treated. I had a SCT at age 74.
Ray
Participant4 years ago I was told I had life expectancy of 5 months. Life expectancy is a statistical average. Every day you wake up on the green side is a bonus day.
Ray
ParticipantSurvival statistics for MDS
The following survival statistics are based on the revised International Prognostic Scoring System (IPSS-R) risk groups. It’s important to note that this system is based largely on people who were diagnosed many years ago and who did not get treatments such as chemotherapy for their MDS.IPSS-R risk group Median survival
Very low 8.8 years
Low 5.3 years
Intermediate 3 years
High 1.6 years
Very high 0.8 yearsI have been told the chance of surviving 3 years with very high risk MDS is 4%. These are only averages. I survived very high risk mds 4 years so far. Don’t give up.
Ray
ParticipantHi Meredith,
This morning I listened to a webinar on MDS and Agent Orange presented by Dr. Steenams, a leading expert. He said the the incidence of MDS among veterans and non veterans has no hard numbers but in his experience they are about the same. I am still curious where you found the 778 vs 3 number?
Ray
ParticipantMark,
Scary – no. Risky yes. 3 year survival rate for SCT is about 50%. 3 year survival for very high risk MDS is 4%. So far I have survived over 4 years. I went with the better odds. You have to be healthy enough to survive the rigors of SCT.
Ray
ParticipantHi Mark,
I had my transplant at age 74. It is not unusual. I am 100% covered for any medical condition and drugs. Conditions do not need to be service connected. It doesn’t matter who’s is at fault. My drugs are about $13,000 per month.
Ray
ParticipantHi Meredith,
I am interested in the 779/100,000 number. In the population in general MDS afflicts about 12,000 or a little over 3 per 100,000 as you stated. In the year 2016 there were about 500 transplants in the US or about 5%. These numbers are pretty consistent. There are 9.2 million Vietnam veterans. At 779/100,000 that amounts to 72,000 veterans with MDS. You would expect a fair number of these to go to a VA hospital for treatment. There are two VA hospitals doing SCT and in 2016 they did no MDS transplants. Where are all these veterans being treated? I am a veteran. I asked about the VA doing a transplant and was told that there is a waiting list so long that I would die before my number came up. I called the VA hospital and was told there was no list and they did few transplants. I had my transplant paid by medicare.
Ray
ParticipantSee Citation Nr: 0812788
ORDER
Service connection for myelodysplastic syndrome (MDS)
[refractory anemia with excess of blasts, trisomy VIII] or
acute myelogenous leukemia (AML), claimed to be as a result
of dioxin or benzene exposure in service, is granted.
________________________________
ANDREW J. MULLEN
Veterans Law Judge, Board of Veterans’ Appeals
Department of Veterans AffairsThe main culprit in agent orange is the benzene used to thin it for spraying. This order seems to grant disability for benzene and thus agent orange. I was denied disability even though two cancer doctors said that benzene was as likely as not the cause of my mds. The denial was on technical grounds. My VSO sent the appeal to the administrative judge appeal. He thinks I have a strong case. I don’t think I will be alive in the 3 to 7 years such an appeal takes.
Ray
ParticipantUniversity of Colorado, Aurora, CO
ParticipantI had transplant about age 74. Transplant, TBI, and chemo was a piece of cake. GVHD was the pits. See my other postings.
Ray
ParticipantTransplant was 4 years ago. GVHD is usually not a problem 3 years from transplant, mine is rare. It is a major annoyance. The 2 months in the hospital was bad. The nurses told my wife that I would probably die. I showed them. About half the time I can feel reasonably normal. It is better than pushing up daisies.
Ray
ParticipantMy sister was a 10/10 bone marrow match for my allo transplant. I provided a cure for the MDS, but I am still fighting GVHD.
Ray
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