My dad is 63 and recently got diagnosed with MDS/AML after a routine blood test showed low blood and platelet counts. He's just finished hgis first round of Vidaza and we are hoping it's successful but his doctor doesn't seem particularly optimistic. He says rarely does anyone with this combination make it past a 1-2 years and even 6 months is a real possibility. It seems from skimming this board people do get cured of this disease and there should be some hope, but unfortunately my dad doesn't have health insurance so can't even get a second opinion anywhere. We are hoping he can get into a remission from the Vidaza, but the doctor says even a remission won't last long. He will do a bone marrow biopsy after 3 rounds to determine if he is responding and if not he will recommend a more aggressive inpatient chemo that lasts 6 weeks or so. I'm a little confused and trying to think positive but it's tough. My dad lives out of state and has no family with him so I've been visiting regularly, and luckily he hasn't had many side effects from the Vidaza, but he seems to have no energy and can't get things done so easily. Would love to hear any advice, input info any of you have about this particular diagnosis, experience with Vidaza and thoughts about how to deal with a situation like this. Look forward to hearing from anyone...
Jayd, It sounds as though you a a bit overwhelmed, and rightly so, as all of us that visit these boards have been at one time or another. I wish I could offer some pearls of wisdom, but I'm on the Lymphoma side of things, so know little to nothing about MDS/AML. I'm responding to let you know that if you go to the LLS Cancer Discussion Boards, scroll down to the end, you will find a link with others that have been faced with some of the same circumstances, and you can, at the very least, read what others have gone through.....and beat the devil at his own game.
God Bless you and yours, and the very, very, best of luck to you on this journey.
It is a frightening time and may I suggest you post this in the topic forums (such as AML) so more people will see it. Also the more information you give the better the answers will be. My husband who is 58 was first diagnosed with MDS RAEB 2, in late April. At the time his blast count was between 10-15, depending on which hospital read the slides. We decided early on to explore a stem cell transplant, tried two months of Dacogen not Vidaza, but the blasts increased to 20% at the end of two months. They recommended induction therapy, basically a week of chemo and then three weeks of monitoring him and supporting the low blood counts. His 5 week BMB showed 4% blasts and his 7 week BMB showed 2% blasts and is scheduled for a transplant next week.
I'm fairly new to this as well, but find any details you can about the original diagnosis as that will help going forward. Unfortunately a troubling aspect is the insurance angle and I'm not versed at all in how to handle this, but I would try contacting some of the organizations directly as they might be able to answer some of these questions.
Also see if there are any local organizations that can help him. You will find the people here to be very helpful, find out what you can and ask questions.
Thank you both so much for your responses, I very much appreciate it. DebbieW - I'm not sure exactly where you mean by topic forums (sorry I'm really new here and still trying to figure the site out). I'm sure with time I will slowly understand better the nuances of this diagnosis and figure out all the steps I will need to take along the way. It is definitely scary and overwhelming, but I'm sure resources like this site will be very helpful. Thanks again.
You can look through the various discussions at the main index link
Scroll down to Living with and click on that, it should bring up the folloing page
Then you can choose either the AML page or the MDS page, this is for AML, but there are a few people who have AML that evolved from MDS.
Another thought is to ask your Dad if he will give you permisson to speak directly with his doctor about his condition.
Best of luck!
So far as I can tell, the only way to get rid of any form of MDS is to do a bone marrow/stem cell transplant. I blew through MDS-RA on my way to AML. We never knew I had the one before I was dx'd with the other. I made it through my AML induction to remission by my marrow remained dysplastic. Really sucks.
I'm curious as to why the doc's trying such mild approach to your dad's AML. Near as I can tell that should be treated first and, unless your dad has several major health issues, I can't figure out why the doc wouldn't go after it with standard AML induction therapy.
I know there are always a lot of things we don't think to write. There are things the doctor says and we just miss it or misunderstand it. In other words, I know likely there are things you didn't think to mention but I'd really want to know why no induction for AML?