Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
Hello,
This is my first post here so let me introduce myself:
My name is Juan and Im from Spain. I heard from this groups and decided to look for support, advise and, of course, some "daily strength", even though there is an ocean between us.
My father is a 75 years old man who has always been healthy with no mayor health problems, still working (as an architect), but diagnosed with MDS a year ago, and more recently, with AML.
He started Chemo with cytarabine + idarubicin (5+3) a couple of weeks ago when he was diagnosed. At that time, he had fever, tiredness and some stomach pain so he went to the hospital. After a blood test, he was immediately taken to a room where he has been staying for the past two weeks for the chemo plan.
Today (one of the worst days in my life), the results from the bone marrow showed that chemo wasn't working good as blasts were 17% still (Ive been told that this chemo usually lowers those much more than that). Doctor said he might be refractory to this chemo, so they are now looking for other options... (something called Dacogen maybe).
Its so sad and hard to see my father feeling good and "sure" of his long term recovery, (he recovered his appetite, recovered from the constant fever, and is not tired any more) and then receiving such bad news...
I wanted to ask you all if anyone has had an experience like that, if any of you knows about this Dacogen treatment and/or any other options we might have...
Please forgive my english, im trying to focus and explain myself, but its a lot to tell and its hard to do so emotionally (and in a foreign language).
THANK YOU ALL
This is my first post here so let me introduce myself:
My name is Juan and Im from Spain. I heard from this groups and decided to look for support, advise and, of course, some "daily strength", even though there is an ocean between us.
My father is a 75 years old man who has always been healthy with no mayor health problems, still working (as an architect), but diagnosed with MDS a year ago, and more recently, with AML.
He started Chemo with cytarabine + idarubicin (5+3) a couple of weeks ago when he was diagnosed. At that time, he had fever, tiredness and some stomach pain so he went to the hospital. After a blood test, he was immediately taken to a room where he has been staying for the past two weeks for the chemo plan.
Today (one of the worst days in my life), the results from the bone marrow showed that chemo wasn't working good as blasts were 17% still (Ive been told that this chemo usually lowers those much more than that). Doctor said he might be refractory to this chemo, so they are now looking for other options... (something called Dacogen maybe).
Its so sad and hard to see my father feeling good and "sure" of his long term recovery, (he recovered his appetite, recovered from the constant fever, and is not tired any more) and then receiving such bad news...
I wanted to ask you all if anyone has had an experience like that, if any of you knows about this Dacogen treatment and/or any other options we might have...
Please forgive my english, im trying to focus and explain myself, but its a lot to tell and its hard to do so emotionally (and in a foreign language).
THANK YOU ALL
Welcome to the group. My son (age 33) also had MDS/AML and under went the same treatment as your father. They did not think it would work, but it did and he eventually had a stem cell transplant and almost 22 months later is doing well.
Many people have had to go through induction chemo more than once to get into remission. Cliff is one of those people and he is coming up on 5 years post treatment and stem cell transplant this September. I am sure he as well as other members will respond to your question.
In the meantime temain as positive as you can, help dad whenever you can and take this one day at a time.
What is you fathet's first name? I as well as many others in the group would love to add him to my prayer list.
Hugs and prayers
Karen
So good to know about your son (Im 33 just like him).
I asked the doctors about that second round of chemo, but they told me 17%blasts after the first round was too much and that as my father seems to be refractory to it, another one would not help.
Im trying very hard to remain positive, but its getting harder and harder... Of course I will have to as long as I stay with him at the hospital, but when i cross the door, i cant help but feeling incredibly sad.
Thank you so much Karen, God bless you
I'm so sorry about your fathers diagnosis. Please ask the Doctirs about a protocol called CLAG or CLAG-M.
Dacogen is same as Decitibane and in aml inductions is usually used for elderly patients who cannot tolerate heavy chemo so if your dad has recovered perhaps they'll reconsider and go for a different heavy chemo, or ask about Etoposide protocols
What about a study or trial drug???
Here in the U.S. the typical Ara-C plus idarubicn course is 7+3 rather than 5+3. And if one round doesn't bring the blast level down to under 5% they usually try a second round of the same or different chemo in an attempt to induce remission before they declare a patient refractory. As Karen said, many of us on this board, myself included, needed a second round of chemo to get into remission. 17% blasts isn't that high, I would ask the doctor why he is going to Dacogen rather than trying something else.
That being said, Dacogen is a good alternative for older patients since they many times cannot tolerate the more aggressive and stronger chemos. It's sort of a light chemo. I have heard of patients surviving many years on this protocol. It's likely he will be transfusion dependent for much of that time, both for blood and platelets, but quality of life is good.
Several of us also participate in the Leukemia and Lymphoma Society message boards. I suggest you post your question there as well. I feel this board is more emotionally supportive but the LLS board provides better clinical information. Try this link:
http://community.lls.org/forum/25-acute-myeloid-leukemia/
You can also search for Dacogen or decitabine (which is the real name of the drug, Dacogen is the brand name). I'm sure there are many posts on the subject. Good luck.
Lou
Ill ask the doctors about those CLAG, CLAG-M and Etoposide protocols, thank you Leapea.
The ARAS-C course my dad followed was 5+2 (not +3, sorry).
I think doctors (at least here in EU) are excessively focused in patients age on top of everything else and that might be the reason they dont want t to let him undergo a second round of quemo, I dont know... I was told he was on a very high percentage of blasts when he entered (around 80% and peripheral), so I guess 17% is not that bad after the first round and, as Lou said, a second round might be a good option...
Its so frustrating to see my dad having almost no side effects during chemo, seeing him so well recovered and strong right now, and knowing age will be the only reason form him not to undergo a possible effective treatment... so depressing.
Another thing I heard about is the Flag Ida protocol, any of you are familiar with it?
Thanks again for all your helpful and kind words and advice my friends, its good to know there are so many good people out there
I am sad that you have to go through all of this uncertainty. As Karen mentioned, I failed my first induction. My blasts were 68% on diagnosis, but fell to 5% after full-dose chemotherapy only to rise to 9% few days later. I was then treated with high dose Ara-c and I went into remission, ultimately received a transplant from a German donor, and am alive and well today. I was 58 at the time, and so, admittedly your father is old than I was. What bothers me about your doctor's recommendation is that he seems to be going more on your father's age than his general condition. I did not do as well as your father did on my first induction. I was very ill and in Intensive Care. Clearly, your father had the strength to get through the first round with no problems, so why not give induction another try with an alternative regimen?
I have a feeling that your father is at a very good hospital (in what city?), and all hospitals and doctors have their own method of doing things. I would ask your father's doctor to explain why he thinks that going from 80% to 17% blasts is a definite failure and a reason to say that your father is refractory to treatment.
Never forget that we are here for you.
Orando por usted y su pap,
Cliff
Doctors decided to send my father home as life in the hospital was starting to affect him mentally so bad, so we have been here for a week, returning there for platelets transfusions twice per week.
We are starting Vidaza tomorrow (they told us it was the best and maybe only option to do now).
He has been feeling so weak this week, even more than he was in the hospital, but he seems to be recovering a little bit in the past two days (even though he has no appetite at all, everything tastes like hell to him and is unable to sleep at night). I dont know, maybe they have taken him as a hopeless case or something... im so afraid of that and dont know what to expect...
Do any of you have any experience on VIDAZA treating AML? All I find is ingo on MDS but very little info or reviews for AML.
Thank you Cliff, Ill ask them about CLAG-M, but the way everything is developing, I guess they will keep him in with VIDAZA (by the way, its the Moncloa Hospital in Madrid).
THANKS TO ALL