Scared of What the Future May Hold

[Hopez2]

My husband was diagnosed with MDS at the age of 32. It progressed to AML within months. A BMT was needed immediately with the speed of the onset of the disease; plus he had 3 cytogenetics. Post-transplant was tough. He never got to feeling actually good. He had some decent days, but never great ones. He relapsed at a year and had a second dose of his donor cells - a mini transplant (I forget the actual term). That was in Oct. He almost died from GVHD this time, but the Dr's saved his life. However, he has not had any quality of life since; he sleeps 22 hrs out of the day. I just found out that they found 1 cell with the abnormal chromosomes in the 6 month biopsy which means that the Leukemia is back.
They have told me that they can not cure him and are starting him on decitabine to help prolong his life. I am scared of how the next few months will play out. They told me he will not have much more of a quality of life than he does now, but with leukemia patients, do they normally die from the disease or other complications caused by the disease, i.e. heart, lungs, etc..
Any experience that anyone has had would be extremely helpful.

Thanks,
Hope

[Debbie W]

So sorry to read this message, I just want you to know that I'm thinking of you at this time and hoping you have a good support system during this difficult time.

Big hugs,
Debbie

[milliken2]

Hope;
I am very sorry to hear of your husband's relapse. With any type of cancer - your immune system is compromised, and generally more at risk for any type of infection. It might be a good idea to get some of those anti-microbial paper masks. I know how hard it is to get a guy to wear them - I argue with Earl every time he has to go to the Dr.'s or hospital - but he listens and usually wears them for his own safety. Let's face it - hospitals and Dr.'s offices are full of germs that may be any MDS patient's downfall. I have been told by 3 Dr.'s that it is not the MDS or Leukemia that does the most harm - it is the secondary infection. As with all patients - you need to keep him hydrated. How is his appetite? I know that Earl's has gone way dowhill since this first started. He is on the Dacogen therapy - but has only had 2 courses of it - and we are told that it takes between 4-6 to see if it works. One Dr told me he had 5 months - another one said 18 - so we are in limbo - and he is still getting weekly blood transfusions and sometimes platelets.
Is your husband on any Procrit or Aranesp injections? They are supposed to help build all types of blood cells - and even though Earl's levels are most always low, the Dr. wants him to continue the Procrit injections since the chemo bottoms him out.
Also - where is his hemoglobin level, B-12. iron (ferritin), copper, & zinc? May need to add some supplements to help build him up - but of course, check with your Dr. first.
I know how hard it is to be the caregiver - and watch the one you love. Again, good luck to both of you.
Beth