Treatment from afar

[Sue&Dave]

My 59 y/o husband has been in watch and wait mode since March 2015 when he was first diagnosed with MDS. We have strongly considered a SCT, but since he does not have a donor and a cord blood/HAPLO transplant is our only other option, we've held off on that decision (plus he had 3 brain surgeries over the summer for a subdural hematoma and resulting infection). In the past month or so we have noticed a big change. He has become much more fatigued and his numbers continue to slide. He's having blood work every two weeks and his local oncologist yesterday said they are concerned about his HGB (9.1) and HCT (26.8), so they will be testing his B12 and ferritin levels next week. All of this to say it appears we are moving out of watch and wait and into treatment, either vidaza or dacogen, but still haven't taken the idea of a SCT totally off the table. When he was first dx'd in 2015 his local oncologist advised us to find an expert in MDS, since SCT's are not performed in our hometown in central New York. He assured us that he will work closely with whomever we choose and can carry out any treatment they prescribe (except of course SCT). We now travel to NYC to Sloan Kettering (about 6 1/2 hours door to door) for consults. So I am curious how others have handled having your MDS expert so far away. I expect there will be transfusions and possibly hospitalizations during his treatment and am curious how others have handled not being in close proximity to your MDS expert may have affected your treatment and/or outcome? Also, how do you manage traveling for your consults in a weakened state?

[bailie]

Sue & Dave, I have a primary (SCT) oncologist/hematologist that is an hour and a half away and a local oncologist/hematologist where I get the azacitidine (Vidaza) seven days a week with a 28 day rest between cycles. During the stem cell transplant I was at the hospital 17 days and lived close to the transplant hospital for 80 days.

I am very surprised to learn that there is no location closer than 6 1/2 hours from central New York for a stem cell transplant. I would encourage you to have the stem cell transplant as soon as Dave's health permits if that is in the plan. It sounds like that is the way your doctors are leaning.

[Sue&Dave]

Bailie - There are 2 centers, one within a 1.5 hour drive (started our journey there and not impressed) and then another that is 3.5 hours; however since he has no MUD we need to use a center that is well versed in cord blood transplants. His transplant doc in NYC helped develop the procedure years ago so we feel comfortable with her knowledge. It seems so odd that during his treatments (whether it is conditioning for SCT or trying to keep the MDS under control), that the doc that knows the most about his disease will be so far away. Educating local treating medical personnel (at a hospital for example) on this disease is exhausting!

[bailie]

As far as Vidaza treatments, they are pretty basic. Two subQ shots in the stomach each day for seven days. It is no problem for our local cancer center. Takes about 15 minutes and I'm on my way home. I had 8 cycles (7/28) before SCT. My CBC numbers came up to normal levels to be ready for transplant. I still go to my transplant center for my bone marrow biopsies (I will have my 19th tomorrow) and follow up appointment two weeks after biopsy.