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
You are almost exactly the same age as my son. He was born in northern New South Wales but we now live in the Chicago area. He was diagnosed eight weeks ago with AML. He did one round of induction and last week finished his first round of consolidation. He is going to have a bone marrow transplant but they are still lining things up. Keir is a video editor and has been able to do one project from home but other than that, he's kind of living in a bubble to avoid infection as best as possible.
Keir reads this board sometimes and I tell him about everyone here but he has yet to post. I think he will soon, though, as he is anxious to talk about the upcoming stem cell transplant. I think you will find this board a wonderful source of support and encouragement.
I am so glad to see your post but sorry for your ordeal. I was diagnosed just the week before you. I too was very healthy and a48 year mother of three daughters- 9, 11 and soon to be 13. I spent 26 days on the hospital for induction with no complications. I have had three consolidations and waiting for the go ahead to get my fourth. I have been blessed to telework from home for the Air Force pretty much full time. What type of aml did you have?
Best wishes and blessings,
Julie
Lisa, I had my treatment at The Alfred in Melbourne. Having one round of induction and one round of consolidation. Originally they planned for 3-4 rounds of consolidation, however i took a long time to recover from the first one. The doctors decided not to go ahead with the rest.
Dave, at this stage no BMT is on the cards. However they have found a match if one is ever called apon. As for being back at work I had my last lot of chemo in the first week of June. Then spending a lot of time recovering at home heading into the outpatient ward 2-3 times a week for tests and blood products. I also had the chance to build myself back up physically and mentally I guess. Exercising and also a few little carpentry projects from my garage. My boss has been great throughout my ordeal. Pretty much letting me work to my terms. But I've found since starting work I'm a lot healthier in my own mind. Having said that I appreciate you advise and I'll defiantly take it on board.
Lori, I found being able to do a bit of work great. You can just about feel "normal" again. So if Kier is capable of getting a bit done from home it's fantastic. I hope everything goes to plan with the BMT. Also I'm sure just being able to have access to the forum would be grey when going through and dealing with AML and everything relating to it. Best of luck with it all.
Julie, I can't begin to imagine going through this with children. You must be a very strong and resilient woman. No doubt you have a great support team as well. It's great you have got through all your treatment to dye without any complications. Luck of the draw I guess. :) I have AMML-M4.
All the best everyone.
Dwayne.
It has been a while since I posted. I guess I have just been basking in my good health, 2.5 years after diagnosis and 2 years after a bone marrow allograft. I am very happy for you about your cytogenetics. My chromosomes were normal, putting me in the middle category where transplant was advised. You should do very well and I am glad that you have a wife who is there for you. Although you said that she is familiar with hematology, I have one word of advice, since I myself am a physician. Don't avail yourself of her knowledge. Don't read about your disease. Just trust your doctors and live your life. That's what I have done, and I do not regret my ignorance.
Cliff
We are AML twins except for the fact that I have 20 years on you. I had inverse 16 with a negative ckit and flt 3. I am very slow to recover blood counts so I am taking almost twice as long to receive my consolidation treatments.
I do have an amazing support group. My husband is absolutely support dad, my church is amazing, my neighborhood, my worldwide US Air Force family and most of all the ever present Grace and mercy of almighty God! I a.m. so glad that are back to work and fortunate to bs able to pace yourself
Please keep is posted on your progress.
Blessings,
Julie
Anyway, as you can see, you are already helping a lot of people. Please stay with us for the duration. (Whatever that means, but it sounds good.) Take care -- dave
I'm sorry you had to join but your very welcome. Any help or support we can offer please ask.
I'm 44 and 14 months and one week post BMT( but who's counting)
Prayers
Planxty
Bit of an update. Everything has been going really well. I just worked my first full week at work and I have been feeling pretty normal again.
I had another BMB in mid November and earlier this week I had a phone call from my Doc with my molecular results. As my stomach dropped when I was waiting for his next response he requested that he would like to see my wife and I that day. There had been an increase in of of the indicators. I haven't relapsed as such but there was an increase.
All along we have had the plan B of a BMT. Having found a donor in Germany shorty after my diagnosis in April. Who turns out is the best match we could hope for. So since the meeting with my doctor the wheels are now in motion to have a transplant in February.
Early January I'll be having another BMB. Pending on those results we will know where we sit.
It's been a big week, learning all about the transplant process.
I guess you have to look at it as another speed bump along the road.
I hope everyone is travelling well.
Sorry to hear about the indicators, but am glad that you are still doing well. My marrow also came from a German citizen. Their program is so much more inclusive than ours.
This is just another speed bump, Dwayne. We will be with you all the way through your transplant. We have a lot of collective experience about everything that you will be going through. Your goal over the next few months should be to maintain your stamina (through exercise), eat well, and keep positive. Things have a way of working out for the best.
Cliff
So sorry to hear about the speed bump but so glad you've found a match. You mentioned earlier that you only had one round of consolidation. As a fellow inversion 16 I am curious how long it took your counts to recover and why your docs opted to discontinue consolidation. Was in part due to post induction complications or just counts?
Praying for all the best,
Julie
Julie, After my consolidation chemo my hb and platelet counts never fully recovered. Which is why I only had the one.
It is so interesting how protocols are different. To get chemo, my players where supposed to get to 100 but I never made it. I got all consultations with plates at 96 87 92 and 76.
What are hb counts in your post? -Is this your red count?
How high did your platelets get?
Sorry for all the questions but we seemed to have struggled with the same issue, low counts.
Julie
If this is not where you are or where you want to be, then just listen to all of the advice given in this thread -- most of these people have also been through it and they know what they are talking about. A setback is not the end of the world. It is the beginning of a new adventure. Relish it and resolve that you are going to fight it with all that you have, and you are going to WIN! We are right here for you, will be praying for you, and we will rejoice when you get into the survivor mode -- I started counting that (since I did not believe it) when I recovered from my last chemo -- that was four years ago -- and I am sure I will talk to you four years from now. Keep the faith -- life is well worth fighting for. -- dave