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
Dave, will you be my spiritual advisor?
Eddie, I can't wait to read your NY magazine article.
Violet, my new neighbor and friend, it was wonderful to speak with you on the phone the other day. It made my day!
Robin, Planxty, thanks for your words of wisdom and for calming my fears.
The doctors identified David's infection and are giving him appropriate antibiotics. They said that it's a difficult strain to attack but they are confident that they will be able to get it under control. Another bump in the road . . . I suppose that we will have to learn to live with them.
This site has been my lifeline and I thank all of you for your continued support.
Myra
I am glad the critter was identified. I had fusobacteria bacteremia on my last hospitalization. Normally, that type of bacterium does absolutely nothing bad as it lives happily in the mouth. I am sure that David's organism is from the mouth or gut and they can treat that. Once that is over, it will be full speed ahead. I will leave you with one thought.....one of my doctors told me (when I was fretting about my ANC count going south every other week) that the patients who do the best, in his experience, are those who do hit the speed bumps (our term) and not those very rare individuals who just coast by. Speed bumps not only give one character, they give one added strength to extricate oneself from the unpleasant situation and move on to claim the gold ring. I doubt I need to say what the gold ring is in our circumstances.
You will have much more to smile about.
Cliff
David's white blood count rose from .4 yesterday to 2.1 today. The doctors want to send him home tomorrow. Surprisingly, he is quite scared to leave. Did anyone else have that same feeling? On one hand, he is so anxious to get home, but on the other, he is fearful that his fever will spike again. He will have IV antibiotics and I will have to give him neupogen (sp) shots. That is something completely new for me! I'm concerned but determined to do what I have to do. Today we were overwhelmed with visits from case manager, physical therapists, etc. As always, thanks for your support.
Myra
Congrats to David. Take him home. It is a place with less bad germs than the hospital. Just follow the dietary restrictions. Ask your doctor if David might get Nulasta instead of Neupogen. The former is just like the latter, but it lasts for 2 weeks and you don't have to give constant injections.
The first time I went home after treatment, I was very worried, because that was the time that I had been in the ICU and was incredibly weak. But thats the only way to regain your strength, and it is wonderful not to be awoken constantly for vital signs.
Love to you both,
Cliff
Yes, I argued with them and I really did not want to leave. I think I was still in denial and really did not think I was going to make it so felt like staying in the hospital was the safest thing. Crazy, since most people are just dying to get home -- but I can certainly relate to what he is going through. Well, there really is no big choice since the hospitals have criteria for the insurance folks -- they cannot just keep people in because they want to. So, once the patient gets to a point where medical practice deems he is better at home than in the hospital, they essentially kick you out (which is actually good). As long as you maintain the neutropenic precautions, home is much safer than in the hospital. There is stuff in there that you just do not want to catch. Please keep us up -- dave
Congratulations it's a great milestone for David. I fought tooth and nail to get home after my first round, and guess what when I got home all I wanted to do was go back I was so anxious. It's common we start this disease being treated so fast and aggressive we have terrible fears.
You will be brilliant.
Planxty
After I completed induction my doctors raised the possibility that I could go home if I wanted to. I was so scared to go home ,I was not yet ready.I remember that night I had a horrible dream that I was at home and someone mixed up my medication and gave me horse hormones!! I woke up gagging and spitting the non existent pills out of my mouth. I declined their offer to go home and I ended up staying in hospital for a total of six weeks, then went home for 1 week before being re admitted for consolidation. After that first home visit my fear went away and I always went home on the day my chemo finished but always returned with a fever mid cycle.I didnt mind this as even 1 day at home was a godsend.
Lisa
I am sorry that your husband is battling AML. This group is filled with the most wonderfully supportive people around. When you say your husband is in the second phase of induction, do you mean he is getting consolidation treatment? Or is he getting an actual second round of induction because the first induction did not get him in to remission? I understand your fear and we are all here to help you in any way we can. Stay strong, keep positive. Wishing your husband excellent restored health in the very near future.
Thanks so much for your replies. For a moment, I thought that there was something wrong with David's fear of going home. As (bad) luck would have it, he spiked a fever last night so we will be here for a few more days. We are actually pleased because had we left yesterday as they had indicated, we would have been back at the ER in the middle of the night. The doctor said that it's a minor hurdle since his numbers are rising and that's what is important. In fact, I may not have to give him the Neupogen as originally suggested.
Once again, your insight is invaluable.
Myra
My husband is in the second part of induction because the doctor said they saw some cancer cells in the fluid drawn from the marrow. The marrow itself looked relatively clean. They had to use several different high powered stains to find any bad cells. The doctors felt like he should have a 5 day chemo therapy as part of induction. They did not say remission yet! They are testing DNA so they can begin looking or a match. All this is happening very fast and is very complicated as well as scary! I would like to talk with someone who has been in this position and can talk me through this.
Thanks for becoming a part of our group. It is not a group that people want to join, but it is a group that helps in so many ways. As I have posted many times, I wish I knew about this wonderful bunch during the darkest hours of my diagnosis and initial treatment.
I was in the same situation as your husband at the time of diagnosis. I had no detectable chromosomal abnormalities, and so I was in the intermediate risk group. I was only 4 years older than your husband when I was diagnosed on March 28, 2011. It was a shock, as it is to even those among us who were already not feeling well at the time of diagnosis.
I was essentially given no choices (although in reality there always are branch points). I was told that my best chance of long term survival was a transplant. I avoided reading anything about statistics (even though I am a physician myself) and, as I always say, put my blinders on and just trudged forward. There were some "speed bumps" along the way, but I got through it and received the marrow from a savior from Germany. It has now been 18 months since my transplant and I am well. I am just getting over the flu, but amazingly, this is the first illness I have had since getting my transplant. My wife, children and others have all gotten sick before, NOT ME. So, DH, your husband will get through this. Because he has a trisomy 8, he also will be recommended to have a transplant as well. Where is he being treated?
The bottom line is that he will do well. Have faith in your doctors. We are here for you.
Cliff
It does all happen very fast, aml is very aggressive. But we have all been through it and were just as scared as you. There is light at the end of this very long tunnel and if you can focus just on one step at a time. You are probably getting bombarded with medical lingo and it is frightening you so much. We know we all felt the same way.
I am not very good at understanding the cytogenetics so I'm not familiar with the one you have listed, however I have a flt3 mutation which put me straight to transplant. I have 4 children the youngest being 6. If I can offer you any support or answer any questions please ask.
The people on this site are very caring and have been through almost every scenario and will only be too happy to help.
Prayers for you and your family
Planxty
I have been right there. And I understand how it all happens so fast. You can hardly get your breath. I have AML in remission. Spent a few days in CCU. Here I am, still standing. Feeling pretty good most of the time. I was diagnosed Easter, 2012. What a ride that was. Your husband will get through this. And you both will look back and wonder how you did it all. Keep up the faith and hold on.
Be Blessed,
lily