new to mds

[fritolayman]

Hello everyone my name is Scott and I live Plantation Florida I have been a cancer patient for many years. First battle was with non hog lmph remission for 5 years 2nd battle same disease but this time I had a bone marrow transplant using my own cells it worked and went into remission for another 5 years. Now I have to cross a new bridge called mds. Two months ago I had a fever spike which went away after 10 hours so the next day went to the primary doctor to get checked out. He did blood tests and exam the next day he called me at work and told me he wanted to see me right away. This didn’t sound good but I went anyway he told me that my blood tests were awful everything very low. The next day I called my cancer doctor Dr. Howard Abel at Holy Cross and he told me to come right away. The next day more tests BMB,catscan,bloodwork the works. One week later he called me to his office with the results. Scott you have MDS with 10-15% blast cells and my reply to him was what the hell is that,he explained. Since then I have been to Moffitt and Md Hutchinson in Houston to get tested even further and meet with mds specialists. Final outcome they want me to start treatment locally here in Plantation with vidaza for 5 weeks and then a another bone marrow transplant but this time using a donors marrow. Getting the donor takes the most time so I wait. If anyone can help with the vidaza issue and handling mds I sure would be very grateful. I am 41 with two children and at the present moment feel pretty damn healtly even with having secondary mds…..bottom line please help I am really nervous and upset about my illness. thank you scott…..

[patti]

Scott,

Oy, you’ve been through the wringer, haven’t you? Your age is a terrific factor right now. Sounds like you have a good set of doctors you trust, which is really good. I can’t be much help with the vidaza but I wanted to encourage you. Read, read, read and learn all that you can about your type of MDS. Which MDS did they classify you as?

Welcome to this forum. You will find more help and encouragement than you could ever imagine.

Best Wishes,

patti

[eve]

scott

good luck with the vidaza treatment – many people have had promising results with it

i live in ny, but have a home in plantation – off nob hill – how did you make out with the last hurricane (wilma)

my house is standing, but all the shrubs and trees and fence are not – i am trying to get someone to clean it up before i go down – hopefully they will be there next week

eve

[Terri]

Hi Scott, Bob is on Vidaza about a year now. The doc said it was doing so well he spread it out to every six weeks a few months ago but then those wbc started going up and up. did a bmb and he really did not see increased blast actually lower now but his marrow is packed. He has him back on every 28 days again, we will see. Next he may add the drug hydroxurea to help with the Aches he has in the lower back hips etc doct says its a result of the marrow being packed and the disease as these are areas with the most bone marrow.
I wish you the best, prayers coming your way.

[Sandy L]

Hi Scott,

We are neighbors. Count your blessings – the younger you are the better your chances are. Read the posts about Vidaza. Mike has been on it for 2 months and after the first round he was tx dependant but the second round has been better. We started the juicing pineapple three weeks ago and the platelets have improved greatly. Two days ago we started juicing he beets. Will let you know if the HMG goes up.
Welcome to the Forum. How bad were you hit from Hurricane Wilma? We use a local hemo that we like very much. Feel free to e-mail me directly and we can chat.

[Sandy L]

Hi Terri,

Sorry to hear about Bob – what does that mean the ” marrow is packed and what kind of drug is hydroxurea?” I read somewhere about MSN 1500 mg daily helps with mds patients. I recently spoke ot someone in Whole Foods – This “Guru” was talking about an alkaline diet to help with back aches from MDS. He said you need to regulate your PH in your body to function properly. Maybe you should consult with Tom Mantos about this? Let me know what you think.

[frank]

hi, Scott,

just like patti said, don’t be so upset. you have to encourage yourself to fight the diesease, try to survive.
i knew what is the feeling as a parent, but we have to deal with it.

good luck for the Vidaza treatment, there are so many people responce for the drug, especially with high blast number.

Frank

[Warren]

Hey Scott!! You and I have alot in common. I was diagnosed 2 weeks ago at age 40. I too am going to Moffitt. I have MDS RAEB-1 with 3 abnormal chromosomes and a score of 2.0. Feel free to Email me warrenvolk@gmail.com

Warren

[Author]

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