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My husband was diagnosed with MDS and is now in treatment and included in a clinical trial using a drug called SGI110. So far this has caused him few problems for which we are very grateful. However I fear we are skating on thin ice as I cannot see into the future and fear what is coming. Quite honestly I am terrified. A bone marrow transplant may be an option and a donor search is underway. I truly hope this will help him.

yobuddy,

I'm sorry about your husband's diagnosis and how much it's worrying you. Please know that he's getting top notch care because he's in a clinical trial.

You're at the first step of a journey that many users of these forums have taken. That includs patients in clinical trials, patients who completed clinical trials, patients facing transplants, patients undergoing transplants, and patients who have had transplants.

Good luck with the donor search, in case that presents a good option for your husband.

I've found that the best way to fight the fear is to learn as much about MDS as you can, so that you'll understand what it is, what can be done about it, and so you and your husband can work with his doctors to determine his treatments.

The Aplastic Anemia & MDS International Foundation can support you too, so contact them if you haven't already. You'll also find information about MDS, written for laypeople like us, at the MDS Foundation website.

There are two live webinars, one today at 2:30 EDT (MDS Research Updates 2015) and one tomorrow at 2:00 EDT (MDS: Low and High Risk Diagnosis and Treatment).

https://www.pathlms.com/aamdsif

This is excellent current information.