MD Anderson questions

[californiamom]

Hello,

My dad is going to make an appointment at MD Anderson and I wanted to get some Doctor’s names from the forum, since you guys have been so much help so far.

We have been to Stanford hospital and have not got much help. We are hoping that going to MD Anderson they will be aggressive. My dad was originally told he had RAEB-2 and now they are saying he as RA and his blasts were never over 1.8%.

He is very depressed in the fact that we thought a SCT would put him in remission, but were told that the percentage is very low and then they can’t guarantee the MDS won’t come back.

My dad is 68 years old and in very good health, but as he says he feels like he’s got a loaded gun at his head and he doesn’t know when it will go off. He’s also very concerned about the cold season, and the fact that he has 4 grandchildren under the age of 3 with very sticky fingers : )

Thank you in advance for the doctor recommendatioons at MD Anderson we appreciate all your help, this is the best place to come for updated information.

[Neil]

Think your dad really needs to clarify his classification. There is a world of difference between RA and RAEB-2!
If he does in fact have RA, he could have a very good prognosis. Would go to MD Anderson and get their opinion.
At 68 I would be very cautious with a SCT. He would surely need a matched donor and then the risk is very high.
How are his White cell counts? Had he been bothered with infections, colds etc to this point? I have 7 grandchildren from 5 weeks to 16 years. Not aware I ever caught anything from them. Just need a bit of common sense in dealing with them when they have any kind of an illness.
Think there is more risk in catching something in church, at the grocery store or on a plane trip.
Hope he discussewd a flu shot with his doc. I have been getting them since I was DX with MDS in 1997.
Aranesp has really helped keep my Red Cell counts up to a point where I have plenty of energy. Has he explored any of the drug options?

[californiamom]

Neil,

First thank you so much for all of your information.

The problem is we were told on my dad’s first diagnosis from his hemotologist that he was RAEB with about 18 to 20% blasts. Then when we went to Stanford to see about a SCT the hemotologist/oncologist said by reading my dad’s bone marrow tests in January, at first diagnosis, his blasts were at 1.8% and his bone marrow test in July after taking Vidaza were at 0%. He said my dad is considered RA because he doesn’t have any chromisomal abnormalities either.

I just feel like maybe we should take the approach of looking for new drug trials and MD Anderson seems to be the best place.

If anyone could recommend a doctor I would appreciate it very much.

I will ask his doctor about the flu shot as well, he’s never had it before except the reason he was diagnosed in January 2006 was because he came down with pneumonia and they took all sorts of tests. Since then he hasn’t had any problems except for a cat bite to the hand which swelled his hand up pretty good.

Thank you for patience, it’s still a little new to us and I’m always looking for information.

[sarah]

We went to MD Anderson March 2002 and saw Dr.Estey. Having trouble remembering first name. Started with (E) I think.

[TEMBO]

Dear Californiamom;

We spent January to April 2006 at MD Anderson. The hemo/ono we saw was Dr.Zeev Estrov. They claim the head of the department is the very best, and he takes patients(I cannot remember his name, but it is on the MD Anderson website). Dr. Estrov was said the be number two. He seems to be a high IQ type. However, he is from Israel and has a very strong acsent that can become hard to understand. He does not quickly medicate, and truly does alot of research. In April on our last visit he was so excited about the lastest stem cell research he was involved in. He explained new exciting findings were taking place.

With all that said check out this link on the MD Anderson website. I have seen this Dr. Jeffrey Molldrem name alot with the Department of Blood and Morrow Transplantation. Now he is doing trial on a vaccine that produces Leukemia remissions and they include high-risk mds in this protocol. http://www.cancerwise.org/february_2005/…yfull&color=red
If you have trouble just go to the cancerwise website and search the article Vaccine Produces Leukemia Remissions.

Hope this may be helpful. E-mail if you want more details.

God Bless,
Karen

[Carl]

Miloslav Beran, Professor of Medicine, is who I saw at MD Anderson. He took a lot of time with me, answered all of my questions and gave me what he saw as my options for treatment.

Be sure to allow two to three days in Houston for the tests and appointment because that is what it will take to get through the process.

[Author]

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