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.
Thank you to all who have reached out to me. I am truly, truly grateful, and am keeping you all in my thoughts and prayers.
Keir is doing well as far as I can tell. The "bloodwork is where it should be at this point" (everything low) and the side effects of the chemo are being well managed. He's eating, drinking, keeping very active. Still no hair loss yet but we understand that can take a few weeks. No fevers in a few days. One hand and his feet are swollen and they think it's just the many fluids he was given but since he had that port area issue on the side that the hand is swollen, will do an ultrasound.
Today he asked the doctor a "what if" question. What if the bone marrow biopsy shows he is not yet in remission, were there good options. The doctor said, yes, there were good options but it was probably not helpful to detail them as they may not even be applicable to Keir's situation and he might not need them at all.
I am struggling a bit with this. I was primary caregiver to one of my dearest friends who had metastatic (stage IV) melanoma. At the time - almost three years ago - there were virtually no effective treatments for that outside clinical trials (unless you had particular genetic mutations that he did not) and an excellent performance standard. I had to engage in battles with Bristol Myers Squibb to try and obtain compassionate use of an experimental drug and was too late (he declined too much in the interim). So my instinct is to have five things lined up in advance because there was - in that situation - simply no time to waste and no "simple" (e.g. FDA approved) ways to get into new protocols. I know melanoma is a far different illness and Keir is, as far as anyone can tell, responding fine to the very standard treatment here. Is my wanting to push for Plans D, E, and F unhelpful? Dr. Venugopal here at Rush is, from what my scoping him out tells me, very good at cutting edge stuff and involved and on top of clinical trial options.
We're doing okay emotionally - Keir better than me, I think! He feels good and is very positive.
Thank you all again - your help is invaluable.
Keir is doing well as far as I can tell. The "bloodwork is where it should be at this point" (everything low) and the side effects of the chemo are being well managed. He's eating, drinking, keeping very active. Still no hair loss yet but we understand that can take a few weeks. No fevers in a few days. One hand and his feet are swollen and they think it's just the many fluids he was given but since he had that port area issue on the side that the hand is swollen, will do an ultrasound.
Today he asked the doctor a "what if" question. What if the bone marrow biopsy shows he is not yet in remission, were there good options. The doctor said, yes, there were good options but it was probably not helpful to detail them as they may not even be applicable to Keir's situation and he might not need them at all.
I am struggling a bit with this. I was primary caregiver to one of my dearest friends who had metastatic (stage IV) melanoma. At the time - almost three years ago - there were virtually no effective treatments for that outside clinical trials (unless you had particular genetic mutations that he did not) and an excellent performance standard. I had to engage in battles with Bristol Myers Squibb to try and obtain compassionate use of an experimental drug and was too late (he declined too much in the interim). So my instinct is to have five things lined up in advance because there was - in that situation - simply no time to waste and no "simple" (e.g. FDA approved) ways to get into new protocols. I know melanoma is a far different illness and Keir is, as far as anyone can tell, responding fine to the very standard treatment here. Is my wanting to push for Plans D, E, and F unhelpful? Dr. Venugopal here at Rush is, from what my scoping him out tells me, very good at cutting edge stuff and involved and on top of clinical trial options.
We're doing okay emotionally - Keir better than me, I think! He feels good and is very positive.
Thank you all again - your help is invaluable.
Each session we were in the hospital we found something new about the hospital or process.
The first time was that she was able to go to the outside world with someone of course. She just put her hands in her pockets, didn't touch ANYTHING or ANYONE, did wear a mask in the lift and corridors but once outside she was able to sit in the hospital grounds and have some fresh air
This gave her another place to go for a walk and a change of scenery, it also gave her the daily walk.
She could do this pretty much any time but when her numbers were very low (ie Platelets were at 10)
Ask the nurses if there is a secret lounge that no one knows about ?
xx
Ed, no one here seems to leave their room; it's SO quiet. I have not seen anyone in the small family area lounge. Some of the people on the floor seem to be quite elderly and perhaps can't leave the room. The doors are almost always closed so it's hard to tell. It's eerie - there are people there but you virtually never see them. Once in a while I will see a family member / friend on route to a room and have said hello. Even the nurses are almost always different. They are assigned to different rooms all the time so we've only had one more than a single day. Kind of strange situation all around! Just a little Twilight Zone-esque....
I know you should limit exposure but are any others visiting? This lifted my spirits so much for a friend to pop in for even half an hour, gave me something to look forward to and my docs were ok as long as they weren't sick or had anyone else in their house sick. Even if it was someone to visit you and you go for a coffee to help break up the time. Maybe ask the nursing staff if there are any other families in the ward that they think would like to meet and chat in the lounge.
Nicole
Good luck, and keep walking!
--Tina
Just ask the nurses, being there you will find a repeat on the nurses and get a good relationship with them.... they may know some tricks :)
Whilst you are trying to work what on earth is happening you learn lots of little tricks to get through each day... routines also help with day to day :)
Today the doctors said the same thing. All okay so far, things going exactly as expected, blood counts where they would anticipate they should be for this point. We're walking and he's eating well and keeping as busy as he can. Now, I think, it's mostly a matter of staying as emotionally and mentally focused and positive as possible while doing the waiting. I return to your messages to re-read them often and greatly appreciate them. I am able to sleep nights without shaking nonstop as I did the first few here. The hope I've found here has been truly a godsend.
Sounds like the doctors are happy with where everything is.
Honestly the first round is long and drawn out, even when you know what to expect and know its a waiting game.... just keep on saying "when" everything is ok, not "if" everything is ok.... he is young and strong and fit.
the Consolidation rounds are easier on the waiting game as you know what to expect and you know how everything jumps back :)
Mum had induction and 2 rounds of consolidation, she just went to her monthly follow up on Monday and the doctor said everything was going well and doesn't have to go back for 3 months.
The nurse said that if the biopsy still shows signs of disease above the threshold, it could be due to many factors. His disease could be more aggressive, the chemo may not have been strong enough, etc. She thought his lack of fevers and so forth were encouraging, though.
To be honest, without the encouragement on this board, I'd be a far greater wreck and far less use to Keir, and I am - again - very grateful. I made a huge mistake and googled his chemo to find something out about it and ended up staring at a bunch of scary statistics again. I came back and re-read the messages here and that helped a lot. I know we all want certainty and that's not possible with anything, really, not just AML. But I cannot imagine getting through this and helping Keir stay positive without the hope I've found here.
Keir's progress sounds terrific. I think both of you are doing just great.
I'm right with Keir-had a surprise BMB last night and waiting for results. It never get easy in the sense that waiting is hard. My family and I pray for Keir everyday-for remission.
Peace and Blessings,
Julie
xxx
We are watching movies, reading as best we can, taking walks (shorter ones today as Keir is feeling a bit tired). The doctors reported the same thing today: he is doing very well and there's no news until the biopsy result.
I used to live in the northern part of Israel. It was by the Syrian and Lebanese borders and from time to time, we'd have to be in the bomb shelters for various reasons. There, you'd sit and sit and wait and not be sure what to hope for or whether to think about things at all. This reminds me a bit of that. Sometimes shells would fall and sometimes people would get hurt and most of the time nothing would happen at all. But mostly what you remember is just the endless waiting. I should have learned some tactics then, I guess!