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.
Hi friends.....
I dont know if this is a proper topic here. If not, Id understand.
Ive been reading many cases, many posts, and see how often you all talk about BMT, stem cells transplants, and so on.... Im so happy for you all having those chances and grateful that God gives power to men to develop new techniques to save lifes.
I also have, by the time being, the chance to save my life with a BMT if I ever need it, because as a spaniard citized I have access to the medical services, including BMT. But most of my friends, even my own children, wouldnt be so lucky. In Central America, BMT are not practiced. Nor we have MRT, nor many tests currently done in other places.
In Central America, if you dont have an international medical insurance with enough money available, you dead from any kind of leukemia that needs a BMT. No matter if you are poor, mid class. mid-high class. BMT are so expensive that you just cant afford it. And very few people have international medical insurances. I dont have one. Neither my sons or husband.
So.... some times I think that my mission in life is to find out programs for BMT for people in my country. Im not the one I was, anymore.... Im a miracle. Some other day I will share how I discovered I had cancer and all that happened around.... So... I have to give it back. I've had so much....
My dream is to find out about programs for helping people who cant afford BMT, to get it done and save their lives. Some of these people might pay a little. Some might pay more. Some might pay nothing.
If someones want to help me give extra meaning to my life.... please let me know and give a hand to many people, waiting for a hope.
I hope Im not doing something wrong by writing this. But I cant stop thinking about this idea I have.
Blessings to all of you
I dont know if this is a proper topic here. If not, Id understand.
Ive been reading many cases, many posts, and see how often you all talk about BMT, stem cells transplants, and so on.... Im so happy for you all having those chances and grateful that God gives power to men to develop new techniques to save lifes.
I also have, by the time being, the chance to save my life with a BMT if I ever need it, because as a spaniard citized I have access to the medical services, including BMT. But most of my friends, even my own children, wouldnt be so lucky. In Central America, BMT are not practiced. Nor we have MRT, nor many tests currently done in other places.
In Central America, if you dont have an international medical insurance with enough money available, you dead from any kind of leukemia that needs a BMT. No matter if you are poor, mid class. mid-high class. BMT are so expensive that you just cant afford it. And very few people have international medical insurances. I dont have one. Neither my sons or husband.
So.... some times I think that my mission in life is to find out programs for BMT for people in my country. Im not the one I was, anymore.... Im a miracle. Some other day I will share how I discovered I had cancer and all that happened around.... So... I have to give it back. I've had so much....
My dream is to find out about programs for helping people who cant afford BMT, to get it done and save their lives. Some of these people might pay a little. Some might pay more. Some might pay nothing.
If someones want to help me give extra meaning to my life.... please let me know and give a hand to many people, waiting for a hope.
I hope Im not doing something wrong by writing this. But I cant stop thinking about this idea I have.
Blessings to all of you
I know what you mean about wanting to give something back.
It is pathetic that we have the technology to help so many people and yet in most nations, these techniques are so costly that no one can benefit. I am glad that you are a Spaniard and can get a BMT if needed. I have been blessed by having health insurance in a country where so many people can be helped by transplant. All nations waste so much money on things like war and other needless activities. I am ashamed at my fellow man for having such misplaced priorities. I wish you wel and am very happy that you are now posting., It is heartwarming to get inputs from people allover the world. When it comes to AML, we are all brothers and sisters.
Be good,
Cliff
It warms my hearth to know you understand.
As Cliff said, its just pathetic how unfair we human beings are.
While I was sick, the very first days after my diagnosis (I got remission one month after that !) I was so scare.... not only by this "black beast" but by discovering my own vulnerability and my great need and dependency on otherssupport and care. Ive been very independent in all possible ways... travel alone when husband cant.... work full time in executive positions.... took care of 2 young boys myself and supported them with my job, without their fathers support (my husband is not their father)...
And all of a sudden, I had a mortal desease ! without warning ! without signs ! Couldnt beleive it !! I was so terribly shocked, and scared of how little power I had to keep my life !!
My biggest concern at that time was to need the national health and security system !! Thanks God I have a private insurance and my husband was great and payed most of copayments. But going to the national security system was like signing my death sentence. Lets say in a few words: what about 1 nurse for 60 people? what about isolation rooms where at least two people were togheter? what about being in a room with 20 other people around you, some of they screaming, some of them dieing?
Ive been so blessed.... that I cant forget. I must not forget how I went on Mercedes Benz while others have to walk. I have to do something.
I work with one ONG founded by an ovarian cancer survivor. She left her information systems career (lm also a TIC professional) and devoted her life to love cancer patients. My dream is to quit my job and join her. By the time being is not possible. I just contribute with money and praying. But I feel is not enough.
Arent there studies, or charity programs, or religous orders, who would be available to bring them cases from poor countries like mine and give them a hand?
As I said before, some people might pay a part of its BMT. And I have this ONG and another one specific for leukemia.
Please any suggestions would be appreciated. As I say, not for me.... You dont need to be involved nor mentioned. Just give some hints....
I think this is why I was kept alive. Soon I will share my battle ..... after that, you will understand... so.... my life cant be the same.....
Blessings.
Your comments brought me to tears. The priorities of governments all over the world are warped. Saving lives is the name of the game. I know you live in Central America, but what country and how long has your family been there?
I admire your dreams, but right now focus on yourself. Despite our insurance, we too are paying a lot for our care. It is just awful.
Por favor, intenta enfocar su energa en s mismo. Perdone mi mando horrible de la lengua.
Cliff
I live in Israel. Here we all have health insurance. I didn't have to pay anything and got top notch care. Isolated rooms, CT, all the best equipment, tests, medicine. Here there is a national Bone Marrow registry that is relatively very large. It has around 600,000 people in it, in a country with a population of 8 million. And access to all international regiteries.
This seems almost natural to us living here.
But then I found out that this is the case probably in a small minority of places. I believe most of the Middle Eastern countries rarely do BMT. Many countries such as Russia and , China, huge countries, barely have any people registered (a fee thousands) and BMT is extremely rarely performed.
To me this is terrible as I know now and appreciate how BMT is such a simple way to save lives. And how if I were in a different country, with less good care, I might not be here now.
So it's amazing that people like you are taking this on in your country.
There was recently someone on this board from Egypt, I am not sure what happened to him, but he knew he wouldn't be able to get BMT in his country. If he were lucky enough to have incredible amounts of money, he could maybe go to Europe and get it there. And still, the chances of finding a match are slim, since the match is so dependent on origin and genetics.
Good luck!
And I'd love to read your story.
Abby2
thanks for sharing. i'd like to say sth about leukemia treatment in China.
leukemia patients here are divided according to their risk level and age group. most younger patients, (younger than 50),except for those with very good risk level and chemo response, and older patients with bad risk level are advised to transplant.
we have many types of transplant, mini, cord, related all match, related half match, non-related..., and many major hospitals can do this. But most people are quequing to be transplanted in the few very experienced hospitals.
for the chemo only patients, they generally don't take the very intensive chemo, mostly, standard dosage, or even smaller than this. very few take the intensive dosage, ----but i take four rounds of intensive consolidation chemo. we stay as in patients to do chemo. one round for one month. with three or two patients in one room, and two or three caregivers, i can't sleep well, and constantly worry about infection.--luckily, i am fine, only had fever each time.
problems with transplant are, first, because of the one child only policy, most people in their 30s, or younger don't have a sibling, so finding a related ALL MATCH is hardly possible. second, the bone marrow donors are not many. i guess only around one million people are registered. To such a heavily populated country, it is really very small number. i didn't find a match. So, we do a lot of half match. But parents need to be young to be donors for their children ,and children need to be adults and healthy to be donors for their parents. So, finding a suitable donor is hard and GVHD is also another problem. though most people have medicare, we still need to pay a lot for transplant.
For chemo only patients, we have one more worry--- the higher possibility of infection because of the relatively poor equipment, and also long time stay.
leukemia was such an alien desease several years ago, then, i suddenly find there are so many leukemia patients.How i wish one day, leukemia patients only need to take a few pills each day to kill leukemia.
love and luck to all of you.
Donna