Please help!
 

My Dad is 76 years old. He was diagnosed in 2006 but had MDS at least a year prior. He began transfusions about 3 years ago. His Ferritin level was getting high so they started him on Exjade to which he had a bad reaction to. He began Vidaza about a year ago but they stopped because his port became infected and he had staff infection on his ankles. The now have him taking Desferol and begain the Vidaza again. He finished his second treatment on the 18th. He had a very bad week and begain shaking uncontrollably. He had a Dr. appt. yesterday and they suspected kidney problems. He had another transfusion last night and his temp was 103. They gave him Tylenol and sent him home. Our local hospital is now transporting him to one closer to his Dr. They think he is septic. I am so scared and I don't know what to do or think.

Dear Daughter
Hang in there. This MDS is so tough to deal with . . . I'm sure it will be a good thing to get your father closer to his regular doctor . . . so few doctors really understand or know how to deal with all of this, so getting him within reach of his own doctor is a great step. I don't have any great advice, just letting you know that someone cares.

firstdaughter,

We've heard from many patients going through experiences similar to your Dad's. Unfortunately, these are serious treatments and they have side effects and can exacerbate other health problems. The doctors have to keep on top of things to determine which treatment has the most manageable side effects and when the risks or side effects of a treament outweigh the benefits. Stopping infections is necessarily the highest priority, and next comes getting your Dad's blood counts up, getting him to a stable place, and reducing his iron stores.

Good luck navigating this difficult path. Many of us have struggled with these same treatment tradeoffs, and I hope it gets easier for you and your family.

Fever
 

Dear Firstdaughter,
As Neil wrote treating infections are very important - actually a MDS patient with suspected sepsis should be treated at once and not sent home/to another hospital http://www.mayoclinic.com/health/sep...ents-and-drugs.

Hopefully he will have all kinds of tests taken at the new hospital and then antibiotics without waiting for the results of the tests. Often they can't find the focus of the infection but get good effect of the antibiotcs in any case.

Too bad with the infected port - has he got a new port? Has the infection on his ankles diappeared?

You don't write anything about his counts. The most important counts are hemoglobin (HGB), white blood cells (WBCs) and platelets. The counts often decrease during Vidaza treatment - many patients need blood and/or platelet transfusions and Neupogen or a similar drug for low WBCs.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, transfusion dependent from dx. Treated with blood transfusions, Neupogen injections, Desferal and Exjade. Since 2010 Thalidomide + Prednisone with good effect.