Jon...I am on Vidaza after being diagnosed in March of 2009. I am on a clinical trial for oral vidaza but have to go to Houston, Tx. once a month to pick the meds up. Oral vidaza is not FDA approved so this is why I'm on clinical trial. I am doing great with the Vidaza. My blasts are down to 2% which is wonderful. I think it is very expensive unless you are on a clinical trial. MD Anderson pays for all my chemo, so see if you can get on a clinical trial to pay for the chemo. I know others are on here with different treatment options so you will want to hear theirs also.
Mikey....I was just like you and not wanting to give in to the transfusions but my doctor said it's no big deal to have one occassionally. I feel like a new person and almost back to normal after my transfusions. You might too.
Granny....I know exactly where your husband is coming from. I felt the same way because I felt it was doomsday for me. This is part of the process to acceptance. When I was first diagnosed, I wouldn't even tell my friends and family where the hemotologist was located because it was in the cancer center. I was in total denial. Then came the anger and pity and finally acceptance. You might want to talk to the doctor about an antianxiety medication for him too. This might help him get through this initial diagnosis and treatment.
We are all here to help each other. If he has concerns that we might be able to help him with, I hope he will ask.

Susan, what a wonderful response! Advice like yours is invaluable in our group, because you've "been there, done that." You made me laugh because I too go to a building with a big sign reading "Cancer Center." For a long time, I wondered what I was doing in a place like that, especially when I saw the clientele. I still feel like a fraud because I still take the stairs for my blood work.

Jon, where in California are you going? Wave to me in little ol' Coarsegold.

Granny, consider getting "The Bucket List" DVD for your husband. Sure made me think a lot about what I want to do for the rest of my life.

Hope our Christopher is doing well.

I second that.....I also hope Chris is kicking up his heels and having a good time. We think about you Chris.....:).

Please read my new post about Chrisjb. Just read his last post which made me laugh and cry.x

this is so sad. I am so terribly sorry for this news.

Though I did not have the pleasure of following Chris like you all did in this short time I did admire his spirit, hope and following his dreams. I think that must add tremendously to one's quality of life.
How sad but beautiful, hope I can do the same thing til my last breath.

I seem to be having difficulties with viewing or recieving posts from you Nickybarr. I clicked on your name and clicked other posts and none showed up so not sure what is happening.

From the couple of posts after your one discussing reading his last post the news does not sound good.. Could you please repost it or send it through to me.

From the sounds of it we may have lost a good freind. If so I would say from his posts and notes that I have recieved from him that the song "I did it my way" fits pretty well. There is a saying live to inspire and he surely has done that.

Please repost the original message. God Bless everyone.

Mike

I found the post and added a reply there.

As I said there our leaky boat captain is under full sail without problems or storms now.

Thanks
Mike

To our Leaky Boat Captain...Youll be truly missed. Rest in Peace.

Rachael

Hi everyone. I haven't been around for a while and thought to come back today... and I swear that the spirit of Captain Chris blessed me today! My Doctor encouraged me today to LIVE my life...

Transplant will always be in the background for my MDS, and the Dr said that they have to weigh up the risk of BMT with the risk of the disease, before they will go ahead. So instead of worrying about the possible future... I am going to salute our friend Chris by taking hold of my LIFE and LIVE IT the best I can.

"Weeping may endure for a night, but joy comes in the morning." Psalm 30:5

I am sorry to hear about Chris. He was a true inspiration to us all. He lived and lead life to the fullest as we all should.

"Do not let your hearts be troubled. Trust in God; trust also in me..." John 14:1-3

The ole blood is running low today. WBC 1.5 RBC ?? HG down to 7.2. So I'm in chemo now as I write this and will finish chemo and get transfusion where I live the rest of week.

Just a note for a smile. When I read the latest post while they were hooking me up, I looked down and saw I had put on m shirt that was full of sail boats. Our buddy and Capn will stay with us through it all.

And bionicJ amen to your doc's advise. Mine said the same thing. Have no fear of those french fries of a good piece of pie. Life is sweet so we should give it every thing we can.

Have a great week everyone.

MIke

Dear Leaky Boat Crew,

Lou and I are in shock....we're so sorry to hear Chris has moved on to the great ocean in the hearafter. Hopefully he will fill his boat with a new crew and enjoy more times of "determination"...as was his way.

Ok...in the words of Chris, we must now rely on our own determination to get us through...he has shown us the method that worked for him and Lou and I are vowing to move forward with strength and DETERMINATION.

I nominate Birdmom to take over the helm of our Leaky Boat. Do I hear a second? All in favor...say aye!

Your faithful crew members - Lou & Gayle

I'm trying to learn about treatments for my newly diagnosed AML. New Zealand doesn't support any new drugs, but I am looking into treatment in California, where I'm from anyway. Someone suggested Dacogen. Has anyone used it? Also, any idea on treatment costs? Any other more focused and less toxic treatment options than chemo?
Thanks
Jon

Jon

I've been on Dacogen/Dectibin for MDS going on 3 years now. Am getting blood transfusion right now then day two of this round of the chemo this afternoon. Again this has been for MDS diag not AML

It appears to have stopped doing it's thing so I'm on this round and maybe another next month then we are considering a current clinical trial of an oral drug called Clofarabine. There has only been 24 on the first phase trial and 26 on the second phase Not sure yet if I'll get on it.

The billing cost of the Dectibine/Dacogen to the insurance (which is not what they pay) runs about $35 thousand for the 5 days of infusion plus lab and office visit costs. Not cheap stuff but has done me pretty good over the years.

Hope that helps some.

Mike