(((MDS)))

[alawe]

hi
i have MDS 5q del
my dr do not tell me any thing about MDS
am i die???
pleas some one hellp me
i am 26 old

[Birgitta-A]

Hi alawe,
Try to read this book. http://buildingblocksofhope.com/

You have a chromosome aberration (5qdel). Many patients with 5qdel will respond to the drug Revlimid.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive results with Thalidomide + Prednisone.

[alawe]

Hi
thank you for answer

[Birgitta-A]

Hi,
Don't hesitate to continue to ask questions. MDS is quite complicated even for patients who have had MDS during many years.
Kind regards
Birgitta-A

[alawe]

What happens if I am not involved Revlimid for many reason ??
what happen????

[Neil Cuadra]

alawe,

What happens to you depends on how severe your MDS is (see MDS Classification) and what kind of treatments you get. The first goal is to make sure your blood counts don't get too low. Do you know what your blood counts are?

Revlimid is only one of the treatment choices (see MDS Treatment). You might get transfusions, growth factors, immunosuppresive drugs, or chemo drugs. If your blood counts are very bad then you need some treatment. If your blood counts are good then the doctor may want to wait and see what happens without any drugs yet.

Since you know that you have MDS 5q del, the doctor must have examined your bone marrow, so the doctor also knows whether your MDS is low-risk or high-risk. I think that you should ask your doctor about all the treatment choices that are available to you in your country, which one the doctor recommends, and why.

You and your doctor can both get detailed information about MDS from the Aplastic Anemia & MDS International Foundation (they will send you a free MDS packet) and the MDS Foundation (download their MDS handbook in your choice of language).

[NLJabbari]

Hello Alawe,

You need to talk to your doctor and they have to recommend a treatment. Is this a problem for you?

You shouldn't ignore your diagnosis...

[alawe]

thank you NLJabbari and Neil Cuadra very much to answering.
my wbc is very low.after bone marrow and Cytogenetic my dr tell me i have mds 5q del and low risk.now i use fefol and b12 and b6 .my wbc is coming up from 2/3 to 3/9.but the problem is i live in iran we dont have the drug and i dont have mony to buy it from another country.any way i just wanne to khnow if i dont use any drug am i die????

thank you and i am sorry i cant write and speak english well.

[NLJabbari]

Hi again Alawe,

Have you been in touch with AAMDS.Org They might be able to give you more information or advice.

I hope that things work out for you...

Take care

[Neil Cuadra]

Originally Posted by alawe

thank you NLJabbari and Neil Cuadra very much to answering.
my wbc is very low.after bone marrow and Cytogenetic my dr tell me i have mds 5q del and low risk.now i use fefol and b12 and b6 .my wbc is coming up from 2/3 to 3/9.but the problem is i live in iran we dont have the drug and i dont have mony to buy it from another country.any way i just wanne to khnow if i dont use any drug am i die????

thank you and i am sorry i cant write and speak english well.

alawe,

Your low white count is dangerous because you could get a serious infection. Try to stay away from people who are sick. Wash your hands often. Make sure food you eat is properly cooked, refrigerated, or washed. Avoid animals if you can. These are some of the small steps you can take to protect yourself from infections.

Since you have low risk MDS you may be OK even without the drugs that you have read about. Drugs like Revlimid are used for the patients with higher risk MDS.

The sad news is that any type of MDS puts your life at risk. The good news is that many patients are able to live with MDS for years and years and years. The doctors can make predictions but nobody can tell you exactly what will happen in the coming years.

I suggest that you contact the Iranian Blood Transfusion Organization and find out what kind of information or assistance they can give you. They might also be able to tell you about other organizations in Iran that can help you.

[alawe]

Hi Neil Cuadra
first thank you very much.
your answering very help me.
thanks for advice .
i dont know about things you told me because no article or website with persian language about MDS . i just search with english web sit and article i undrestand some thing but it is very hard me to know. any way thank you again.