New Patient confused and scared

[Anne Yeomans]

Hi everyone
I was just diagnosed (can not spell) with MDS. Other than I am four months from full blown AML and starting vidaza treatment on the 9th. Doc said I am High risk 1 and the cause is probably the chemo and radi. from my first bought of Breast cancer. Have had it twice. My only chance is a BMT. I believe my main road block is going to be that I only have medicare/medicaid thru disablity. what I have read so far is showing that, that insurance is going to be no good. I don't know where to go or what to do. lord saves me from 4th stage breast cancer to give me this. only have at the most two years. PLEASE HELP!!!!!!!!!!!!!!!!!!! lost and confused in florida

[Neil Cuadra]

Anne,

I'm sorry to hear that about your diagnosis. Both drug treatments and a transplant are ways to fight secondary MDS so it's worth learning more about both options. The first thing to learn about the transplant option is whether a matched donor is available.

For the insurance issue you should get expert advice, not assume that your doctor's office knows all the ins and outs. Coverage may depend on where you are treated (which health center). There are a number of organizations on our Resources page that can give you information about transplant coverage and/or financial help. You might start with the Aplastic Anemia & Myelodysplastic Syndromes International Foundation for initial advice about who else to contact.

[Anne Yeomans]

Thank you very much. at least now I have a beginning maybe not so alone after all. God Bless

[Alice P]

If you can get into a clinical trial at the National Institutes of Health there is no charge for the treatment (although you would have to travel to Bethesda, MD). Go to clinicaltrials.gov and search for "myelodysplastic syndrome AND nih."

[Anne Yeomans]

Thanks Alice. I see doc on the fourth, I will check with him and see where to go. I have just told brother and sister. they are trying to find info as well again thanks and god bless

[Lisa Z]

I know FL pretty well, as my mom lives there. There are wonderful medical facilities, but yes, you need an insurance expert to help you out here. If it doesn't look like insurance will cover BMT, (which would be terrible, in this country of ours), I would seriously and quickly have your doctor contact Neil Young at the NIH in Bethesda, MD.
If you qualify for any of their trials, (I have MDS and did the Campath trial in 3/09), this would be a good option for you. Since it is a federally funded research institute, there is no charge for the services provided; but with most trials, you need to be "local" for about 4 months. They do provide a stipend once you are released from the hospital, but it can be difficult to be away from home for months... something you have to weigh.
After I came home from my 12 days of being away for the trial, I felt strongly that if I had to do a BMT in the future, I would likely want to be close to home with my support group in tact.
Good luck with getting the information you need. Push the administrative people at your doc's office to do some leg work with your ins. company, if they can.
I wish you the best of luck!

[Anne Yeomans]

thanks for alll the info and support. See Doc on the 4th will get results and will ask him if they have had any luck. spoke with bother a sister they are willing to see but not sure what intails for them. Right now I have no answers for them. Quess thata will come was I figure out if they (ins.) will cover. May god Bless you all and keep you safe in this new year.