Treatment Locations and Options

[Sue]

My 58 year old husband was diagnosed with MDS in March 2015. We are from central New York and our local oncologist monitors his condition but does not treat him as it is not one of their specialties. Upon diagnosis we traveled to MD Anderson in Houston and met with the brilliant Dr. Garcia Manero and his team for 3 separate visits. We had agreed on a watch and wait approach, with the understanding that we would eventually transition to a center closer to home since a transplant is the only cure. Fast forward to today – and we have had our first trip to Memorial Sloan Kettering just recently. In the time since initial diagnosis and now, we have come to understand that a transplant is our absolute last resort (especially since a quick look on the registery shows no match!) We have been told by our local oncologist that he will do whatever treatment is recommended by the primary (MSK) oncologist, i.e. chemo, etc.

So my question is for those that must travel to center- because we are a 5-6 hour trip from our treating oncologist, if he needs to be hospitalized during bad bouts, typically where does this occur? Our insurance covers travel and lodging only for transplant, but if he needs to be hospitialized for any other reasons, do you typically go to a local hospital or to your treating center?

And btw, it seems like this disease is such a chameleon I can barely keep up!

[Anonymous]

Hi Sue, Thank you for your post with information regarding your husband’s health. I know this is a difficult situation for you. Is there an MDS Center of Excellence that is closer to you? Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/.

• This reply was modified 8 years, 3 months ago by .

[LeAnn Duke]

Hi Sue, I am sorry that your husband has this very unstable disease. Your description of it being a chameleon struck me as being so accurate. It is different every month it seems.

My name is LeAnn and I am 58 yrs old with MDS. I have refractory Anemia with ringed sideroblasts which basically is means. That my RBCs are the only cells affected right now and that the RBCs that the bone marrow is producing are abnormal in size and shape and are not maturing but rather dying before they can mature. Those same cells also have rings of iron around them so I already have too much iron in my system. I get transfusions (2 units)once a month right now. I too have a oncologist that is some distance away but luckily only an hour and a half instead of 5-6 hours. We live close to Nashville, TN and my oncologist is on the south side of Nashville. He has been very helpful in agreeing to work with a dr here closer to where we live to keep a check on my hemoglobin levels and let’s me get my transfusions at out local hospital. That helps so much seeing it is an all day affair.

I am in a low risk stage right now so I don’t know a lot of ways to help others, but I wanted to respond to your post to just let you know there are many out there who are bearing the same burden and looking for answers as well. As this disease progresses a stem cell transplant looks to be the only sure fix for this. My doctor agrees that the transplant should be the last resort because the risk of treatments can be worse than the risk of the disease when it is at a certain stage. He says when the risk of the disease is greater than the risk of treatment then we will proceed with the transplant. I will keep you all in my thoughts and prayers and hope that a donor can be found for your husband.

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