overwhelmed and confused

[CathyW]

I was just diagnosed with an aggressive form of MDS. This all started about a month ago when a routine blood test turned up pancytopenia. I’ve had two bone marrow biopsys and am still waiting to find out information about the chromosomes and then I will meet with the doctor to figure out a game plan. Right now I feel completely fine — although a little tired. My preliminary research has scared me. It sounds like most people don’t last a year with this diagnosis. Any comments, suggestions, ideas?

[patti]

Before you panic about what you’ve read about aggressive forms of MDS – breathe. My MIL was diagnosed with MDS RAEB-t with greater than 30% blasts in her marrow. She was told 4-6 months to live and everthing we read said that also. It’s been 16 months now and she still feels well and transfuses every 4 weeks. Age is a factor also, my MIL is 75.

The literature out there about prognosis is very old. So many new treatments have come about since then. I would see what your doctor says. Make sure he/she is a good one!

I would encourage you to look for a good cancer naturapath that can help you strengthen your body while you work with the doctors. Sometimes called integrative medicine – it can do a lot for keeping you healthy throughout whatever treatment you choose.

Best wishes,

patti

[Suzanne]

Hang in there! I know from experience how scary this sounds at first. The statistics can be alarming and the prognosis they give you in the beginning sounds like the end of the world. They told me and many others here something like 6 months to a year life expectancy except maybe with a bone marrow transplant. I was extremely high risk from the beginning with a statistically very low chance for chemo to even work. Here I still am. So much progress has been made in the past few years. When I was diagnosed there were no approved treatmentsspecifically for MDS. Now there are 2 with others close to being approved. Everyone is different so take one step at a time and if you haven’t already, go to a Center of Excellence for MDS at least for a consultation and be sure you are working with a doctor that is very experience with MDS with access to new treatments and drug trials. Things will get less confusing as you have more information on your individual disease and learn more. Welcome to the Forum.

[sugarwhale]

Dear forlorn friend,
I just read what Suzanne and Patti wrote. I can’t do better than that! You’ve come to the right place by coming here; all of us here can help you.
Just look at all of our posts. You’ll find people who have LIVED with MDS for many, many years.
Here are my suggestions for you SO FAR:
First, find an outstanding doctor at a “Center of Excellence.” Your doctor should be a specialist in MDS. Secondly, learn all you can. “Google” MDS and arm yourself with knowledge. Third, don’t be discouraged. Of course you’re going to die. We all are. But prepare yourself for a long life first! You might get the MDS people to send you their packet of information too. Fourth, take action NOW, while you don’t feel bad. There are lots and lots of very good treatments. You should be able to discuss everything with an outstanding doctor.
By the way, my mom was supposed to die several years ago. She’s now 88; she’s mentally alert, reads, drives everywhere, does yardwork, cooks, etc. Yes, there IS hope. Don’t let anyone tell you anything different!
You can always come to us. We’re here for you.
~~~ Janet

[Jerry]

Wow !! You have been given the best of information. I am only writing to stress the NEED to go to a Center of Excellence as soon as possible. The staff here at the MDS foundation can get you an expedited consultation. I live outside Columbus Ohio and have been to the Fred Hutchinson Cancer Clinic in Seattle and to the Cleveland Clinic. I cannot tell where you are from, but the is no place too far when your life is at stake. Hang in there. There are wonderful people working on MDS all over the world. And when you see your doctors, ask, ask and ask again until you feel that you understand. And after that, come here and ask some more. Good luck!!

Jerry

[CathyW]

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