I am 72 years old and was diagnosed with AML in May of this year. I have just completed the first course of chemo in the trial and would like to know if anyone out there has been on the same trial? and how they reacted to it. Ginny
I noticed your post a few months ago and was not sure about respoding. My father recently went through AML16 trail and sadly did not make it through the first set of chemo. How are you getting on after treatment?
My son had cml,with a transplant 2007.In may 2009 he turned acute had a dose of chemo in july and september then going on to have his dli.Unfortunatly he did not make it and passed away 22nd Jan 2010.I hope things go well for you.Linda
Hello, I found your posting as I looked for more info on the AML 16 trials. My Dad is shortly to start & I would like to hear someone elses real life account.
The Doctors & nurses all sound positive, and I'm sure Dad will go ahead with the trial even if I present him with some negative info.
But I would like to know please how old your father was, and how acute his condition prior to the start of his trial.
My father is meant to be getting Cytarabine, what did they trial your Father with?
Thank you for taking the time to read this, I am so sorry your Dad didn't last a bit longer. AML is such a strange condition in that you just can't predict a thing, & we are taking each day as it comes and doing our best. It's all anyone can do.
I very much appreciate you taking the time to offer your story to help me, but also appreciate that you may not wish to do this.
I do understand, and thank you for reading this far.
My mum got diagnosed with this at the beginning of may. She is currently on a two week break after 2lots of chemotherapy. She is due to have a bone marrow transplant at the end of july. Her sister is a match for her. I am absolutely dreading it as I've heard there can be risks????
My mums diagnosis came as a complete shock. She was attending the doctors twice a week for nearly three months. They were telling her she just had flu and chest infections. My mum knew there was something more to it when she was breathless and noticed blood spots on her skin. When she went back to the doctors they rushed her straight to the hospital and started treatment straight away as her body was starting to give up!!!! Very scary!!!
She has been amazing through this, far better than me. She has had no sickness or any other bad side effects apart from the metal taste in her mouth!
It's always sad to read about those that have been diagnosed with AML, but it's seems that none of you have heard about a new follow-up treatment to be used after the chemotherapy.
It was launched in April 2010 and should be avaliable at the clinics soon.
After the induction and consolidation treatment you should have reached first remission if the chemotherapy was successful.
Then this new treatment with Ceplene/IL2 could/should be used in three treatment cycles over 18 months.
This treatment are a immunotherapy that are supposed to strengthen the body's own immune system to fight the rest of
We've been right through the mill since I last posted, Dad was supposed to go on Cytarabine but ended up on clofarabine. the very day he finished his 1st week of chemo we nearly lost him! I no sooner took him home then I had to rush him back an hour later. He stayed there a month and after nearly losing him a second time it turned out there was an infection in the hickman line. So now he's back home and making white blood cells himself he seems to be okay but his main problem are more to do with his frame of mind, which is something I can't do much about apart from trying to ensure he is comfortable or busy doing something (if he can) His kidneys were damaged so he cant have that chemo again,
Its truly a miserable state right now. He lives with us now, so our lives are completely upsidedown and its putting a strain on my husband & I. It just feels like its a waiting game.
Anyway, I am trying to avoid being a whinging old Pom, and trying soldier on!
Sounds like your Mum has a much better chance than my Dad. Of course there are risks which is very scary, but you've got to think of what will happen if she doesn't do the treatments & I think thats possibly scarier. My Dad was not able to have a transplant, so the fact that they are offering it to your Mum is a good thing as they wouldn't do it if they did not think it would have a good chance of working. I have been constantly amazed by what they can do, so do have a bit of faith.
The metal taste is common, my Dads nurse said make sure not to use metal cutlery cos it can make it worse. But your post was back in july, I wonder how your Mum has fared since then?
