PATIENTS OVER 40

[mdsingulfbreeze]

CONFUSED IS AN UNDER-STATEMENT WHEN DEALING WITH THIS. MY HUSBAND WAS DX ALMOST 2 YRS AGO…HE HAS WENT THRU 2 TREATS (CYCLOSPORIN & ATGAM) AND SEEMS TO BE IN REMISSION AT THIS TIME. HIS COUNTS WERE ALMOST UP TO NORMAL AND ARE NOW STARTING TO TREND DOWN WBC 2.4 RBC 3.7 PLATE 58 HMG 13.7. HE IS STARTING TO SUFFER WITH NEW AND MORE PAIN AND HAVING HIS HIPS STARTING TO DETIORATE (PER RECENT MRI). HAVE UNREALTED MATCH BUT WANT TO WAIT UNTIL PLATELETS GO DOWN. IS THIS NORMAL? THEY ARE SAYING AGE (46) IS THE PROBLEM AND THAT WE SHOULD WAIT. WOULD LOVE TO HEAR FROM ANYONE WHO HAS EXPERIENCED THIS.

THANKS

[Zoe]

Margaret,

Are his platelets 58 thousand, or 580 thousand? 58 is low, 580 is high, but I don’t think high enough to be a problem.

What is wrong with his hips? I don’t understand the age concern either. His young age makes him a good candidate, unless they want to wait to see what happens next?

What type of MDS does he have? How many blasts?

Zoe

[frank]

Margaret,

if he had a low degree MDS, wait and see may be a good option, otherwise you should push for the unrelated BMT, maybe you don’t need do it, but the matching game can last a year long, it is better to prepare well.

Frank

[mdsingulfbreeze]

Hi Zoe,

His platelet count is 58 thousand.

The Dr here said his bones are starting to detiorate. I have read patient stories where they believe it is the ATGAM. Of course the Dr in Gainsville said that was impossible.

[Zoe]

So do they want his platelets low because of his bone deterioration? I really don’t know anything about bone deterioration. Maybe someone does.

Zoe

[mdsingulfbreeze]

No, they just are saying it (Transplant) is risky because of unrelated donor and his age. They can not do anything about the hips deteriorating because the risk of having hips replace is risky for infections at this time until after successful Transplant. I read some simular stories and some (pateints) believe it it the ATGAM/Cyclosporin that is causing the deterioration. Doc’s have no clue.

[Neil]

Hi Margaret,
I would follow up with the docs on the platelet issue. There is no benefit in waiting till they go down. That is if they go down.
Another thought. Are you sure the docs were referring to the transplant? Is it possible they were looking at his hips. Hip replacements are not permanent. They last 20 years or so depending upon many factors. Could it be they want to wait on the hip to avoid doing 2 replacements on his hips over time?
As a rule and considering the info you provided One would think they would prefer to do a BMT/SCT at as young an age as possible. Platelets at 58000 would pose some risk. Think they would want them higher.
You might wish to get a second opinion. Dr List at Moffett in Tampa is excellent and might provide more insight.

[mdsingulfbreeze]

Hi Neil,

We have went to Moffitt for 2nd opinion and they suggest to wait as well. We are seeing Dr Hugo Fernandez there. They are saying unrelated donor is risky over 40 and want him to wait because of the mortality rate. They said HIP replace was not an option at this time and would not be until after transplant.

[Neil]

Hi Margaret,
About a year ago my sister in law attended a meeting at the NIH. One of the topics was MUDs.
The presenter was Dr Richard Childs. Apparently he has had considerable success with them.
If you google him at: Dr Richard Childs NIH you will get his basic info. If you click on research info you will find much much more of interest. Contacting him may provide a significant amount of insight.
These are really tough decisions and the more info one has the easier the decision when the time comes.
There was a rather significant amount of info on MUDs that became available at a year to a year and one half ago. It has been some of the most encouraging offered for years.
Another possibility is a cord blood transplant. The Univ. of Minnesota has some recent success stories that are worth reviewing.
After personally dealing with MDS for 11 years there is finally some real progress. If the research over the last 2-3 years continues there might be a light at the end of the tunnel.
It is getting difficult to keep up with it all.
Hope you husband can benefit.

[Author]

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