MDS Support

[Teresa T]

I am a 52 year old woman that was diagnosed with MDS in June 2015.
Never had any health problems not exposed to benzene and did not have previous chemo. IPSS score .5-1.0 IPSS Intermadiate 1; blasts are 5% or less; abnormal chromosome 7. Shocking to say the least. I have had 2 rounds of decitabine. (5 days once a month) I have had 6 blood transfusions (11 units of blood and 5 units of platelets since 6/12/15.
I recently caught pneumonia and had to be hospitalized for 3 nights with antibiotics.since I have had the last round of decitabine (8/10/15) I have seen an increase in transfusions and just an overall tired hopeless feeling. I have also made the difficult decsion not to continue to work as I have been neutropenic for so long I'm now scared to be around anyone that might be sick. Also I want to take extra care of myself which involves rest, small amounts of excercises research etc. I have started wearing masks every time I go into pharmacy or grocery stores. my last blood count was: WBC .5, HGB 7.7 Platelets 28. I meet with my DR from Dartmouth in Hanover NH on Friday. I'm afraid the decitabine is not working.
Any advise on additional questions I should be asking at this point would be helpful. I have not gotten a 2nd opinion yet as I have been told I have one of the best dr at dartmouth

[traceyn11]

Hi Teresa,
I am so sorry you have to battle this awful disease. I hope you find these forums helpful and supportive. I know I have found lots of information here and the members have been very supportive!

I am just a few years older than you. I was diagnosed in April 2015. I too have been neutropenic for a while and have also been on medical work disability since June due to being in the hospital several times for infections. I had 2 rounds of Vidaza - one in April and one in May. It did not go well for me so I have not had any more. I am currently on IV therapy at home due to a fungal infection in my lung and a small abscess in my colon. I was scheduled for a stem cell transplant on 9/23 which has been delayed until the fungal infection is gone.

Have your doctors talked to you about a stem or bone marrow transplant?

[Neil Cuadra]

Teresa,

One question for the doctors is how and when they would decide that the decitabine has helped or failed to help. Their timeline for a response may be different than what you've assumed.

Don't be surprised if the doctors concentrate on your long-term improvement and pay less attention to your transfusions, pneumonia, and any other "temporary" setbacks. Those events can be alarming and worrisome to patients, but not as important to the doctors' view of your overall progress.