Do I have MDS

[Paul 36]

Hello everyone.

I am a 36 year old male with no prior chemo etc, only a few ct scans for kidney stones. My wbc at last CBC 2100 and platelets are 101,000. No mention of red cells being low. That was the second cbc in two weeks. I first had ulcers under my tongue, not painful, and the red spots over my eyelids, and what I thought was a stomach bug. Cramps etc for several weeks prompted me to see my GP. The first CBC just wbc was low, 2400, now platelets have dropped also. I have an apointment with a hematologist in Waco TX Wed Dec 17. Of course I am scared to death. All I can think about is not getting to see my little girl (4) grow up. If I have MDS disease, would I be a good candidate for a BMT.. I pray for all of you who have been struck with this disease. As for myself, waiting for answers is so hard, and very scary..

[jaxem]

Hey, paul
your counts are low but not ridiculously so you’re doing the right thing by seeing a hematologist and going to the next step. you’re very young so whatever the outcome, you’ve got that on your side. sounds like the hematologist will want a bone marrow biopsy to see what’s happening where the cells are made. the MD Anderson Center at the Univ. Texas in Houston is a good place to get a 2nd opinion. don’t start thinking BMT until you done with the 2nd opinion. good luck buddy.

[paml]

Hi Paul,
Waiting is awful however, as Jack suggested the only way to dx MDS is through a bone marrow biopsy. Also know that a virus can play havoc on a healthy person’s blood counts skewing their normal ranges until that virus has cleared the body. Wishing you good health, let us know after your appointment of the results.

Pam L.

11/08 – RAEB2, 12% blasts.

[ramboy]

Dear all,

Just stumbled on this forum – a ray of hope. Thanks to this community and our prayers with you all.

My father in law (MDS-RA) has swollen feet and ankles with excruciating pain (so bedridden), both warm and tender to touch. This started just after his first transfusion. Docs not able to pin down cause. Some antibiotics have not shown much results after 3/4 weeks.

He is in India (Chennai) – doctors not too sure of (or too cautious while) treating MDS patients.

When diagnosed he had 6.8 haemoglobin 1500 WBC 153K platelets 20% packed cell volume. Was put on transfusion when he fainted with HG falling to ~4. Has had 2 units of erythropoetin so far. Doc not willing to try Dacogen yet. In any case they want to wait until infection and fever have been dealt with, but it’s ~ 4 weeks now.

They wonder whether leg condition is cellulitis. Ultra-sound scan of feet show only a local impact. Initially they said it could be osteo arthritis but now not certain. Started with one foot and in 1 week the other caught on.

Latest blood results Dec-08 show ~20% blasts.

Please share your thoughts.

Thanks a lot!
ram

[ramboy]

Update to my post above:

FIL had HG down to 5.9. So he is receiving another transfusion today (3rd). 175K platelets. 1700 WBC.

He has been started on an IV course of Linezolid for the infection yesterday. I think it goes by brand name of Zyvox in the US.

What people have shared in this forum gives some hope.

Thanks,
ram

[Kristi S]

Hi everyone! I am Paul 36’s wife and I have also joined this forum. I am so glad that we have found a source of information from patient’s and their families about this horrible disease. I have noticed that the instances of MDS in someone in their 30’s is fairly rare…. Is there someone here that is also in this age group?? Do treatment options change depending on age? Thank you so much for your help..

Kristi

[jaxem]

kristi
i’m not in this age group but I know that younger people can withstand a much more aggressive chemo treatment if blasts are involved. Paul needs an analysis of his marrow to see what’s happening there.

[Kristi S]

Thanks so much for all your support. We are having the BMB on Wednesday and should have the results after a week. I’m hoping we can get a preliminary diagnosis so we aren’t completely clueless as to what is going on.

[Mary4Mike]

Kristi,

Jack is correct about your husband needing to know what is happening with his marrow and it sounds like that is going to happen this week.

Please let us know what you learn and know that you and your husband, along with all the other forum members, are in our thoughts and prayers.

Mike and Mary

[lindajo]

Kristi, Paul, How are you doing?

I was diagnosed in 1991 at the age of 29. I am now 48. My daughter was 7 and now she is married with a 1 year old.

Fear will feed any disease, fight it as much as you can.

I am surprised if you were given a MDS diagnosis without having a bone marrow biopsy result back.

I have only had infrequent transfusions over the years. They combined it with antibiotics as needed for infection.

A BMT will only be recommended if your disease is progressing rapidly. How are you now?
Linda

[Author]

Posts