Newly diagnosed with MDS as of 3/30/2011

[Andy R]

Hi Everyone,

While getting a blood sample checked for what I thought would be arthritis, it was discovered that my red/white/platlet counts were in the cellar. Follow up with a specialist and a bone marrow test show that I have MDS.

Realizing of course that everyone is different, I would appreciate feedback on good questions to ask the doctor.

Also, if there are medications involved, what might they be and what are the side affects?

I’m trying to avoid too much web searching else I will end up with information overload or working myself up.

Any help you can provide would be greatly appreciated.

Thanks,
Andy

[ramey2148]

Some of the questions you will ask about treatment are going to depend on your age.. If you let some of the people here know your age it will help them with giving questions to ask. Did you get a Bone Marrow Biopsy yet? If so how are your chromosomes, and what classifacation did they give you? Staying away from the internet is a good idea. Alot of stuff on there is 5-10years old and there are better treatments out there now. I am 33 now and got MDS last year and had a Bone Marrow Transplant on Aug. 31st. When I first found out I had it the internet made me think I was done. Keep a possitve attitude it will help a great deal. Good Luck.

Bob

[Andy R]

I am 44. I don’t know what my classification is yet but it was explained that 9 chromosome pairs are damaged.

To be honest, I didn’t even know there were classifications till yesterday.

I had a bone marrow test and was given the lab results but they are hard to make sense of. I see a specialist at Dana Farber in two weeks so hopefully there will be more answers then.

No meds have been prescribed yet.

There is a CT scan set for Tuesday. That is to check for an enlarged spleen?

Keeping positive here. Just wish I knew more. Trick is in asking the right questions.

I think the doctor I am currently seeing may be holding back some to avoid alarm.

[Andy R]

First, thanks for reponding to my original post. I was not sure how active this forum was. It is great to hear you are doing well. Could you describe what you had to go through for the transplant? How hard was it to achieve a match? I have two sisters and both are willing to help but they are living overseas right now. They have been digging into it but it looks like any databases they can join are specific to their county of residence.

Andy

[ramey2148]

I had to go through Chemo for 7 straight days to put the leukemia in remission. Once it was in remission i was told they had a donor. My donor was from overseas so they can check your sisters while they are overseas. If they use them they won’t even have to come back to the US. They can go to a doctor there and they will transfer the stem cells here and put them in you. I was told they don’t like to use woman if they have children unless they have to. I can’t answer how long it takes to get a donor because it is different for everyone. If there is a match in the data base then they will find it pretty quick (weeks). You do want them to start the search now so that you have the match ready. Once you find a match, they have to contact the person (donor) and the donor has to go through a series of tests. Hope I helped a little and good luck.
Bob

[Andy R]

Hi Bob,

This was very helpful. I forwarded your response to my sisters in England. Hopefully they can do something with it. One of my sisters had approached her doctor and was told that there is a marrow database she can join but it is for UK residents only. Wonder why they are resistant to taking from siblings who have had children?

Andy

[ramey2148]

It’s not just siblings that have children, it’s any donor that is a famale who had children. I think it’s a harmone thing.

[bobweinberg]

Andy, you are at the right place. Call Audrey Hassan at the MDS Foundation (800) MDS-0839. Ask her to send you the book "100 Questions & Answers About Myelodysplastic Syndromes" By Jason Gotlib, MD, MS & Lenn Fetcher, RN, BSN.

[Andy R]

What did you go through after the transplant? Were you in the hospital for an extended time?

[lindajo]

Get free information from the Aplastic Anemia & Myelodysplastic Syndrome foundation. Go to the home page and click on links.

Their information is easy to understand. Currently there are 3 classification systems. The first is (FAB) is French American British system. The second is the IPSS International Scoring System. The third is new from MD. Anderson Cancer Center and is gaining acceptance. I don’t get it yet/ Find out what system your hematologist/oncologist is using to classify you.

There are many treatments that can help you postpone a transplant and live a meaningful life. There are several types of transplants. You will need to get copies of all of your test results and labs to make sense of anything you read and to refer back to before asking your doctor questions. Don’t be afraid to take a tape recorder with you to your appointment. This forum is a great place for information and support. Good Luck Andy.

[ramey2148]

When I got admitted for the transplant I had to be in the Hospital for 37 days. It is not the same for all, but you can expect at least 25-30 days. I still go to the Dr. once a week for bloodwork. After transplant is a trying time. I was very tired and did not have any motivaation to do things on my own. I hope you have a good support group because you will need it. As time went on I started to get some motivation, and then started to walk. The restrictions they put on you don’t help much at all. They tell you not to be in public, no eating raw foods, no eating out, and stay away from EVERYONE who has been sick or thinks they may be getting sick. Somme of the smallest tasks will require a nap but that will eventually go away after a few months if you go for walks. I still can’t lift, run, or do things like I used to. The possitive thing is I am alive though. It is a slow process, but it’s better than the alternative.
Bob

[Andy R]

Wow! That is one hell of a stay. Do they put any restrictions as far as electronics to keep you from climbing the walls? Being unable to use my laptop or Xoom would drive me absolutely crazy.

[ramey2148]

Yes you can use your laptop. That is what kept me in touch with some people aand sane.

[2424]

Hello everyone.

[ccpat]

Hi Bob,
I don’t write much here, but have been paying closer attention since my husband is scheduled for a non-myeloblative transplant next month. What did you have, if I may ask? My husband is 65, diagnosed 2.5 years ago with RCMD, had 18 months of Vidaza which quit working in Jan. this year. We have read quite a bit, but, since everyone is so different, don’t really have any idea of what to expect. He feels pretty good now, has been "healthy", but his Hgb. now is kept up to 9 with tx, then falls quickly to 7. His platelets are down to 14 and he is usually neutropenic. We are not anxious to go ahead with this transplant, but it looks like that is what he must do. So glad to hear that you are getting along so well! And, thank you for posting here so we can have some encouragement!
Pat

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