Another newbie with MDS
 

I'm 41 and was just diagnosed with MDS. I was treated for non-Hodgkin's lymphoma in 2007 and life was going pretty good until a couple of months ago when I noticed new bruises, bleeding gums, and a really hard time breathing during my training runs (for a disastrous 5k in June that I could barely finish). I'm looking for people in my age group especially for support. I'm facing a stem cell transplant (but not 100% sure whether it would be BMT). I found out tonight my brother is not a match so I will need to search the national registry for a donor match. I'm also trying to figure out where to go for treatment as my NIH doctors don't do un-related transplants. I'm scared and overwhelmed by all of the decisions I'm facing and would appreciate any advice.

Thanks!
Angela

Angela,

I can appreciate how overwhelming it feels. So many MDS patients had no idea they were seriously ill until they got this diagnosis. Even with your symptoms you probably weren't expecting to be broadsided this way.

Have you met with an MDS specialist at NIH or been referred to one? You should make sure you've discussed all of your options with an MDS expert. Get the free MDS booklets from the Aplastic Anemia & MDS International Foundation (AA&MDSIF) so you can learn as much as you can about this disease.

Like you, my wife was 41 when diagnosed and did not have a sibling match. You can read her story here. She made it through her matched-unrelated-donor transplant and so can you.

Angela,

Just wanted you to know that there are a lot of us who have felt that overwhelming OMG feeling when given the MDS diagnosis. My husband was diagnosed May 26th and I will never forget sitting in that doctor's office. Unlike you though, he is 73 and not able to have a transplant. I will pray that they will find a suitable match for you.
God bless you and keep us posted.

Linda
Husband dx 5/26/2010; Vidaza 28 day cycle.

Thank You
 

Thank you both for your response as I appreciate any words of comfort.

Neil - I was a previous patient at NIH and was going there for my 3 year cancer-free anniversary checkup when it all hit the fan. I had suspected something was wrong in May/June but had NO idea it would be this. I had my first clue it could be bad during the middle of a 5k race in June when I could not breathe after mile 1 and had to walk/run just to finish. I crossed the finish line and collapsed into tears because I just something bad was going on. Ha ha - was I right.

Anyway, my cancer doctors at NIH passed me over to Dr. Sloand, an MDS specialist, and I've been working with her somewhat to figure this out and see if my brother is a match. Since he's not a match, I'm meeting with her tomorrow and a transplant team from NCI at NIH to consider a pilot study of un-related donor transplants. I'm a lot scared because there are only 25 patients on this study, but I will talk to them. I'm also meeting with Johns Hopkins and trying to get a consultation with MD Anderson.

What's so overwhelming to me is that we (the patient) has to do all of this research without understanding the terminology and we're scared and confused. Then we have to figure out our best course of action and pick a transplant team we hope and pray will get the job done and we can go on to live a long, happy life. It's scary!

Angela,

You are in great hands with Dr. Sloand. We've heard her speak at patient conferences. She's very knowledgeable and knows how to talk to and explain things to patients, a skill not all doctors have.

Good luck at the appointment. I hope it becomes clear whether the study makes sense for you.

Al's wife
 

I know just how you felt when your husband was given the diagnosis of MDS. My husband was diagnosed on June 30, 2009. We were told that he had from 4 months to unknown, we chose the unknown. He has been on a 28 day cycle of Vidaza and it seems to be doing what it is supposed to do. In the meantime, other problems have risen. I think they are contributed to by the MDS but congestive heart and pulmonary edema have kept us busy going to, not only the oncologist but a cardiologist, a primary care physician and a pulmonary doctor. We thank God for each and every one who are treating my husband. We are going through a rough spot at this time but don't count us out. I feel like MDS is a disease of all the family. Each one of us just have to do the very best we can to keep our loved ones' spirits up as well as our own. God bless all you Caregivers.
ann

Angela,

I'd like to chime in with Neil - Dr. Sloand is an amazing doctor. I was lucky enough to have her finish up a bmb I was having at NIH that the first doctor could not manage. She was incredibly competent, skilled, very quick! She also was involved with my medical team during my ATG treatment, and I always enjoyed speaking with her - very clear, and direct. You'd be in very good hands with her as your doctor.

Dr Sloand
 

Hi - I also had the opportunity of being treated by Dr Sloand - she is fantastic. She explained and took very good care of me during my ATG treatment 7 yrs ago. I wish she was closer and I could see her again for my problems now.