[Bob]

You are fortunate to be near quite a few Centers of Excellence. I would call, make an appointment, del(5q) is generally favorable but may not align with excess blasts, which is a separate category. There are lots of factors that determine treatment. You need to have everything explained to you.

[Bob]

The Dr. should be able to give you a report of the Bone Marrow Test. You should be able to see the important blood test results and how they match-up with the norms. (Was it Hemoglobin at 5 or 4.3 – that is quite low.)

The Dr. should be able to tell you what kind of MDS you father has and at what level the MDS is, and what the specific treatment options are.

It is going to be a lot of information particularly since you are not used to thinking about MDS. It is a difficult but important first step. There are people here and at Marrow Forums ( http://www.marrowforums.org/ ) who have dealt with the worst MDS has to offer.

Try to avoid looking up things related to MDS that are more than ten years old. Things have certainly changed in ten years and much of that information is not current.

Please share where you are located and what hospital your father is going to and to by all means get to a Center of Excellence. That’s where the specialists are.

[Bob]

It is overwhelming to learn about something like MDS. MDS takes many different forms and many different paths. You need more information to understand what is happening. There is tremendous variation among treatment centers and for me, it made a big difference to go to a hospital on the list of Centers of Excellence on this site. If he is not going to a Center of Excellence that might be a good option.

[Bob]

We have somewhat different issues. However, an important question is where you are being treated. I noticed an enormous difference when I went from my highly regarded hematologist to a hospital listed as a Center of Excellence on this site. That may be a good step if you are not already at one.

[Bob]

It is a very difficult situation. The problem is he does not have enough information unless he has been thoroughly evaluiated at a hospital that specializes in MDS after a BMB. The BMB is no big deal — I did it with no sedation. Not as bad as a visit to the dentist’s office in my opinion. Better to have a sore butt than sore gums.

For me, going to an MDS Center of Excellence was night and day

Right now he does not seem to have even a first opinion.

It’s time for him to think of his family and get the best diagnosis ad the best care.

[Bob]

I know from experience that even a good hematologist may not know enough about MDS to be helpful. It is definitely worth making the effort to go to a hospital on the Centers of Excellence list. The difference I saw at a Center of Excellence hospital was remarkable.

It also helped me to post and read the posts on The Marrow Forums board. Here is the link to the MDS section of that board. Visit the Board and post your specific issue and ask for a response.

http://forums.marrowforums.org/forumdisplay.php?f=7

• This reply was modified 5 years, 10 months ago by Bob.

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