[rar]

Close but not that old at just short of 74. My doctors ignore age, physical and mental condition more important.

Ray

[rar]

No one can guarantee how any one person will do a particular drug. In my case 4 years ago I had very high risk MDS with an expected life span of 5 months with a 4% chance of living 3 years. I tried an experimental drug that in 2 months reduced my blasts from 15% to 2%. This allowed for a transplant. I have been MDS free since then. I did get GVHD which has been plaguing me since the transplant. I am on a drug that seems to be helping the GVHD.

Ray

[rar]

Hi Tereze,

To answer your original question I was turned down for a SCT. I went to the VA oncologist for an answer on my MDS RAEB2. I gave them ny test results. They agreed that my condition was critical. She said the waiting list for a transplant was so long that i would be dead by the time my number came up. I called the VA transplant center and was told I had to go through my local oncologist. I decided I did not to trust my life into the hands of these people. I had two transplant centers that were eager to do a transplant and I picked one of them.

SCT is done after OC. Google stem cell transplant after ovarian cancer. Visit transplant centers until you find one creative enough to adapt to your needs. Find a cell donor.

Ray

[rar]

Hi Tereze,

My most recent post was more directed at the poster before my last one. I was to 2 different transplant centers and saw 3 other oncologists. None of them questioned my suitability, All thought I needed a transplant ASAP. Here are the unasked criteria I felt they were looking at. It might help if you see how many you fit. Risk involved in transplant less than risk of My MDS, having a full time caregiver, healthy enough to withstand the rigors of transplant, have a matched donor, have blasts less than 5%, able to be less than 5 miles from transplant center for 3 months. Age not a factor. I was 73. They transplanted some in their 80’s.

I meet the criteria except for blasts. Mine were 14%, ANC .1. I was put on a clinical trial for a drug that treated my mutation. In 2 months blasts were 2%, blood levels unchanged. Doctor said all drugs are temporary, get transplant now. That happened less than 5 months after initial diagnosis.

GVHD is a problem. It affects eyes, mouth, throat, skin, and nervous system. These are painful and annoying. The major problem is drug side effects. The worst is the dizziness that makes me afraid of falling and keeps me from operating power tools. I used to enjoy woodworking and hiking. I am also weak that keeps me from exercising properly. I can live with GVHD because I don’t like the alternative.

What is the excuse the transplant center give for turning you down? Which of the criteria above do you not meet?

Ray

[rar]

I assume that you have low risk MDS in which case wait and watch gives the best longevity and quality of life. With low risk MDS average longevity can be more than 10 years with the option of a transplant should the risk increase. I had very high risk MDS witch has a 4% survival at three years with an expected longevity of 5 months. Transplant is a risky procedure with about a 30% cure rate. The rest either die or relapse. My transplant was 4 years ago. I was lucky and was cured of MDS. Not the end of story. At 3 months I had acute GVHD that hospitalized for 2 months with the doctor not expecting me to live. I recovered. At 2 years I came down with moderate cGVHD that has really impacted my quality of life. I am on numerous drugs, one of which costs $14,000 a month.

A transplant was the right decision for me because otherwise I would be pushing up daisies now. With all the different varieties of MDS a transplant decision is an individual call depending on health and type of MDS. I was 73 at time of transplant.

Ray

[rar]

Why not ask in the transplant center rather than worry about something that might not be a problem? What are you exactly are you suffering from? Have you started any treatment?

[rar]

yes

[rar]

It depends how deep your pockets are. My SCT with side effects was billed at about 3 million. Insurance covered everything but was paid much less.

[rar]

I am a cold war veteran (1958 to 1962). I had MDS RAEB 2. I went to the VA for a second opinion. The oncologist said I had very high risk MDS, but unfortunately the waiting list for a transplant is so long that I will be dead by the time a slot opens up. Transplant survival rate at VA hospital is 60% vs. civilian 70%. If I were you I would go the medicare route. The total amount billed by doctors and hospital came to several million. Medicare and supplemental plan paid the whole claim. My transplant was 4 years ago.

I put in a disability claim for MDS due to benzene exposure. I was denied. I filed a notice of disagreement. It is going on three years.

Ray

[rar]

A person participates in a clinical trial in the hope that they will get a novel treatment that will help with their treatment or will help others. I have participated the latter mainly because the former helped. I am on a drug that won FDA approval on a single trial of 42 people, so a few can make a big difference. Also consider the consent forms say that you are allowed to stop your participation at any time without giving a reason. I opted out of one without a problem.

[rar]

I had a clinical trial for an IDH2 mutation. In two months it lowered my blasts from 15% to 2% which allowed my successful transplant. I also participated in 5 other trials.

Ray

• This reply was modified 5 years, 11 months ago by .

[rar]

With low risk MDS you stand to live longer on average with wait and watch. With high risk you have an edge with transplant. When diagnosed I had MDS so mild I would never need treatment. 2 months later my ANC was .1, blasts 13%, other blood counts critically low. I am still alive and MDS free 4 years later. My initial odds when MDS flared were 4% to live 3 years.

Ray

[rar]

Have you considered a transplant?

Ray

[rar]

A mask does little good. Hand sanitizer is good if used. If high risk with low ANC she should limit exposure and follow doctors orders. I spent 2 months in the hospital with an infection – no fun.

Ray

[rar]

Neither the chemo or the TBI made me sick. I did feel somewhat weak and fatigued.

Ray

[Author]

Posts