Thread: I was told I have Myleodeplastic (MSD) level 2 risk factor

Hi,
About 15 month ago I was told I had Myleodeplastic (MSD) level 2 risk factor. Tomorrow I will get my 69 th transfusion. Would love to hear from anybody with the same problem.
tjcolombo

Although still pretty rare, especially in children, the incidence of myelodysplasia seems to be rising -- likely from the increased exposure to pesticides, synthetic chemicals, GMOs, EMFs, etc that we all face. Besides packed red cell transfusions, what have you tried?

They started me on vidaza that didn't work. Then I was switched to the second choice chemo, but don't remember the name. I landed in the hospital twice this past year and almost didn't make it out. It was then decided that there would be no more chemo treatments. That apparently left only transfusions of which I've had 69 up to today. Thanks for your intrest. tjcolombo

Chemo & PRBCs are not going to turn things around for you if the problem is a toxin, chronic viral infection, etc.

If you haven't already, you soon will have iron overload from all the transfusions. This is treated by chelation. It's possible that the DFO (desferrioxamine) they will give you could, along with the iron, pull some other heavy metals and such out. But look into other detox approaches to help reduce dependence on PRBCs.

Thanks Dr. Malak, I'll talk to my doctor about this on Monday morning 1/16.

To learn more about Myelodysplastic Syndromes follow the link.

Myelodysplastic Syndromes Treatment (PDQ®) - National Cancer Institute

Treatment Option Overview

Key Points for This Section

• There are different types of treatment for patients with myelodysplastic syndromes.
• Treatment for myelodysplastic syndromes aims to relieve symptoms, slow progression, and improve quality of life.
• Three types of standard treatment are used:
  
  • Chemotherapy
  • Supportive care
  • Chemotherapy with stem cell transplant
  
  
• New types of treatment are being tested in clinical trials.
• Patients may want to think about taking part in a clinical trial.
• Patients can enter clinical trials before, during, or after starting their treatment.
• Follow-up tests may be needed.

I am sorry to hear of your situation. In researching I found the following suggestion at the National Cancer Institute:

New types of treatment are being tested in clinical trials.
Information about clinical trials is available from the NCI Web site.

Patients may want to think about taking part in a clinical trial.
For some patients, taking part in a clinical trial may be the best treatment choice. Clinical trials are part of the medical research process. Clinical trials are done to find out if new treatments are safe and effective or better than the standard treatment.

Many of today's standard treatments for disease are based on earlier clinical trials. Patients who take part in a clinical trial may receive the standard treatment or be among the first to receive a new treatment.

Patients who take part in clinical trials also help improve the way diseases will be treated in the future. Even when clinical trials do not lead to effective new treatments, they often answer important questions and help move research forward.

Patients can enter clinical trials before, during, or after starting their treatment.
Some clinical trials only include patients who have not yet received treatment. Other trials test treatments for patients whose disease has not gotten better. There are also clinical trials that test new ways to stop a disease from recurring (coming back) or reduce the side effects of treatment.

Clinical trials are taking place in many parts of the country. See the Treatment Options section that follows for links to current treatment clinical trials. These have been retrieved from NCI's clinical trials database.

Reference Page - Myelodysplastic Syndromes Treatment (PDQ®) - National Cancer Institute