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Old Thu Aug 23, 2012, 08:31 PM
ltw ltw is offline
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Join Date: Aug 2012
Location: Frostburg, MD
Posts: 3
FIL's MDS turned to AML

Hi, I am a new member. I have been browsing this forum since March when my Father in Law was diagnosed with secondary or treatment related MDS. We found out today that his MDS has progressed to AML so I figured it was time to join the forum. I have been doing tons of research on MDS and AML but am sure that my family is going to have tons of questions in the upcoming weeks/months and think that communicating with people that are dealing with or have dealt with the same thing will be helpful.

As I said, my FIL, age 74, was diagnosed with MDS in March 2012. It was treatment related or secondary MDS stemming from his treatment of CLL three years ago. His treatment plan was to be 4 rounds of Vidaza followed by another BMB to determine if he was a candidate for a transplant. He just finished 4 rounds of Vidaza 2 weeks ago. He did great throughout his treatments - no major side effects or infections of any kind. We thought that he had this thing beat. On his last day of his last Vidaza treatment, he was hospitalized for a very severe sinus infection. During his stay in the hospital, his blasts went from 4% to 12% but his doctor said that it was a side effect of his nupagen (spelling ?) shots. Dr. discontinued his nupagen and his blasts went back to 2%. He was released from the hospital but was receiving daily antibiotic treatments and continued receiving blood and platelets. Yesterday his blasts were up to 6% and today they were up to 30%. His doctor informed him today that he no longer has MDS, it has progressed to AML. He was sent directly from our local hospital to Johns Hopkins in Baltimore, MD. My husband, his sisters and his mother are there with him now. He is being checked in and hopefully will meet with a doctor this evening to be evaluated.

I have read that AML that develops from treatment related MDS is more resistant to treatment and has a poor prognosis rate. Does anyone have experience with this? My FIL is in good physical health, other than the AML...no heart conditions or other underlying health issues so I think that his body will be able to withstand induction chemotherapy, which I've read is pretty rough. No one has mentioned a survival rate or long term prognosis. I guess my biggest fear is my FIL spending what time he has left being deathly ill in a hospital 2 1/2 hours away from his home and his family.

Sorry about the rambling....I have a ton of questions, concerns, and worries churning in my brain right now and it helps just getting some of them off of my chest. Any information / personal experiences that you can share would be greatly appreciated...good or bad. I just feel like his MDS has progressed to AML so quickly and I need to be realistic about what we are dealing with.

Thanks so much and sorry again for the super long post!
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