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.
If you look at the participation on the various discussions you will see a LOT of GREAT people on this forum, most of whom have are survivors or sufferers of cancer and here particularly, AML. Lots of activity, but I am concerned that there are very few new people coming in who can use our help. Perhaps they are intimidated by the ongoing discussions and are afraid to "break in."
Well, this subject is for you. Please give us your questions and concerns. We are here to help you. Just a couple of us have medical backgrounds -- most of us have just been through what you are about to experience. Make it an adventure! ... and let us help you along the way. That is what we are here for and that is what this discussion subject is all about. We are waiting to hear from YOU! -- dave
Well, this subject is for you. Please give us your questions and concerns. We are here to help you. Just a couple of us have medical backgrounds -- most of us have just been through what you are about to experience. Make it an adventure! ... and let us help you along the way. That is what we are here for and that is what this discussion subject is all about. We are waiting to hear from YOU! -- dave
Today is his first day of chemo and also the first day I can visit him because I've been getting over a cough and his doctor (understandably) didn't want me to come until I was over it.
I am also the sibling who lives the closest to the hospital, so I will be the point person when my brother's wife has to go back to work next week. They live about 2 1/2 hours North of Seattle and the rest of the family is coming from across the state, so it makes sense that I am second "in charge" behind my sister-in-law.
Ironically, we've been told that my brother's identical twin is not a suitable option, so it's up to the rest of us. We all want to get typed ASAP but they're holding off on it for the time being.
Thank you all for the warm welcome and for your advice. Even though he has a tough road ahead, I am feeling very hopeful and encouraged that he can beat this thing!
- Linda
Please excuse my ignorance, but I do not understand why an identical twin would not be the best option. Are they afraid that the twin's marrow has a tendency to transform into AML? I just don't understand.
Cliff
We're just as baffled. I will be sure to ask the doctor myself when I see him later today. It just doesn't make any sense, right?
- Linda
Who am I to proffer an opinion, but I must say that I am as in the dark as you are. I always thought that identical twins were the ultimate for transplants. Go figure! Please let me know what he says.
Cliff
I am new in this forum but in a tremendous need for your support and help. My mum, 57, was diagnosed with an AML, M4 on October 3, 2012. She is done with the first induction therapy and is at home for a 2 weeks break. In 5 days she's returning back to see if she is in remission or not. She feels much better though, but still lacking strength and stamina.
On the other side I feel devastated and can bearly function normaly. I am so afraid and scared of losing her:(: She is everything to me and simply the thought of losing her scares me to death! The worst thing is that my brother and father are doctors, and every grim prognose they make, because of any result, breaks my heart so badly!
I would appreciate any positive and supportive answer from this forum. God bless you all and help all of us to overcome this ordeal
I am new in this forum but in a tremendous need for your support and help. My mum, 57, was diagnosed with an AML, M4 on October 3, 2012. She is done with the first induction therapy and is at home for a 2 weeks break. In 5 days she's returning back to see if she is in remission or not. She feels much better though, but still lacking strength and stamina.
On the other side I feel devastated and can bearly function normaly. I am so afraid and scared of losing her:(: She is everything to me and simply the thought of losing her scares me to death! The worst thing is that my brother and father are doctors, and every grim prognose they make, because of any result, breaks my heart so badly!
I would appreciate any positive and supportive answer from this forum. God bless you all and help all of us to overcome this ordeal
You have come to the right place -- welcome aboard. The chances of your losing your Mom to AML is quite low. Take it from an AML survivor who is going on three years since my last chemo, There are several lists here, including the survivors club -- feel free to get on any of them and ask questions. But the main one is -- do you need to be overly concerned? Well it is only natural that you are -- any kind of cancer is a serious thing and not to be taken lightly. But the medical approach to AML is well developed and when the cancer is caught early enough and the patient is in good physical health otherwise, then the chances are extremely good. So relax and pitch in to help and stay very positive -- talk about things you are going to do when she gets better -- make plans -- let her know you have faith. Good to hear she is feeling fairly good after her induction round. She might need another one -- this is fairly normal, to if she does, don't let that bother you -- it took me two. After that will come the consolidation round. I am sure they have told you the many precautions to take -- if not let us know and we will give you a run-down. Lack of stamina and being tired goes with the turf -- this is something that will only be solved once she puts several months after the chemo. So this is nothing to be concerned about at this point. Please keep us up on how she is doing ... there are many care-givers on this forum, so you should feel at home -- dave
AML is not a death sentence. We are all surviving one day at a time, one week at a time. The new normal is being thankful for today ( a cliche I have learned is truth). I have had two inductions, am in a clinical trial and exploring other options for transplant since a match has not been found. I tell family and friends that 98% of the success is between the ears, you need to believe and visualize good health and be aided in medicine's advances.
Provide you mum with positive support. I rely on my children to ask me routine, everyday things. I tell them it makes me relevant and I fight so I can continue to provide them every level of support. My God knows what is best and He has carved my path. I want to provide my children and husband what they need and this drives me to health and makes me want to be home, healthy and wiser to the every day things I once took for granted. I wish your mum every blessing and the strength she needs to overcome AML.
Andrea B.
I am so sorry to hear what your mom, you and your family are going through, it is very difficult. I am glad your mom is feeling better and that she made it through induction, that is the first step on the road to recovery. Take it one day at a time. Understanding the disease and treatment takes time, be patient with yourself. Your mom would want you to make sure you are taking the time to eat and rest. Praying for your mom, you and your family and for good upcoming bone marrow results.
Take Care,
Suzanne
Sorry to hear about your Mom, but as the others have said, you must not take a pessimistic approach to your mother's treatment. I am 14 months post-transplant. I don't know what kind of AML I had, only that I was in the middle category prognosis-wise and was advised to be transplanted. I have done very well so far and enjoy every moment that I can. Having an optimistic spirit will help both you and your mother. You need to have faith in her doctors and not do too much reading about prognosis, treatments etc. You have to have trust in your mother's doctors. Just encourage her to eat well and try to get sleep while in the midst of her treatments. Also make sure she gets out of bed and walks and deep-breathes. You do not want an pneumonia or other kind of infection that happens when people are immunosuppressed with chemo and then lie around. You will be a very important support for her. You father and brother can translate some of the medical jargon for you, but getting too worried about numbers and statistics will not help anyone
She will do well. Keep this always in the back of your mind, and, as others have said, we are all here to help you get through this. We are all at one stage or another of treatment and recovery, and we are there for you!
Cliff
I thank you from the bottom of my heart for all your support and optimism you are shinning. I never thought that joining a forum will be so helpful and stress relieving as this!
First, let me wish you all a fast and easy recovery, and may we all enjoy life as long as possible with our loved ones. Tanya, I am so sorry for your loss, my thoughts are with you and your family. I can feel your pain from here.
As for today, my mum and myself, enjoyed it very much, and I owe this satisfaction to you, my dear friends. Your supportive mails have changed my attitude toward myself, first, and then my mum. Never till now have I felt more optimism and strength to overcome this ordeal. If only my mum could speak English, she could join this forum and share all the thoughts and feelings with you! Just for your information, I am from Macedonia, Europe.
My mum today felt very well, she could even walk with more strength and do some easy house work. She is an extremely positive person. who only sees the best in things. She has so much hope and faith that she is going to overcome this disease and lead a happy life for many more years to come. She is making plans now for many years to come:). I also do my best in hiding my real feelings about her situation, but when the nights come, that's when I reveal them, alone in my room.
Some of you asked me about the future steps planned. Well, we are considering BMT for sure,the doctors said it is a must. Her general condition is very good. She has never had any other serious problems, and has been very fit. Doctors think that she can handle it. We still haven't decided for the donor, that's the next phase. She has only one brother, but they are also considering auto-transplant if she enters remission now. As for the chromosome change, it was with no mutation, which meant average survival rate, around 60%.
Once again, let me thank you for the support, and wish you a fast recovery. I am praying every day for all of you out there and my mum.
Hona
I am afraid I was not too optimistic, but I do care and want to help. I am glad the doctors are all for BMT. This is definitely the right approach. BMT from the healthy donor is much better than auto transplant, because it is very hard to ensure that there are no leukemic cells in the bone marrow of AML patient, even when remission is achieved. I don't think auto transplant is even used for the treatment of AML in the US. I hope your Mom finds a donor that is a good match.
Concerning mutations-what you are referring to is chromosomal make up. It is not unusual for AML patient to have normal chromosomes-no deletions, extra, or missing chromosomes. But all AML patients have mutations of some kind-this is what drives this cancer, mutated blasts. For example, my father had normal chromosomes and FLT3 mutation. He also had NPM1 mutation which is supposed to be favorable for prognosis, but it looks like FLT3 just took over. This is called cytogenetic analysis. It takes longer to do than chromosomes. Ask the doctors about cytogenetics specifically.
Wishing you all the best. Let us know how things are going and stay positive.
Lots of love and support going your way
Cliff
I hope all of you are doing well.
I just came from the hospital and the result from the first induction is 'partial remission'. I was so devastated when heard this word 'partial' but the doctor said that he was very satisfied with the result and hopes to get a full remission in the next round. She is resuming with another, a bit more stronger therapy tomorrow. Before treatment, the amount of the malign cells was 70% and now, only at certain spots, it is 10-20%. the rest of it is less than 5%, which the doctor said, is a complete remission.
Did anyone of you go through this period? Do you think my mum will have the chance to get to full remission this time? The doctor was very optimistic, and I want to believe him so badly.