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.
Good luck with the biopsy. No doubt, the waiting is oen of the hardest things with AML.
And yes, AML is VERY different than most cancers. So there are so many things I hear from friends that they know from other types of cancer, and they are really not applicable to AML.
Yes, there are good options for getting someone into remission. It's not uncommon to have 2 rounds of induction, or different protocols.
The good thing about being young with AML is that they can tolerate very strong treatments.
So I don't think there's a need to look at any plan B or further for now. The standard treatments are pretty much the same anywhere, especially in the first and important phase of getting him into remission.
And statistics are on his side.
I was 42 when diagnosed, I got into remission with induction (my bone marrow test was controversial but they decided to assume remission, for which I am grateful now, looking back.).
Good luck!
Abby
Keep in mind that failure to achieve remission in first induction is not a catastrophe. Many of us, Cliff and me included, have required two rounds. Don't look too far down the road - just trust your doctor that there are good options if induction doesn't happen as easily as you may have wanted.
Lou
Keir's main (attending) doctor, Dr. Venugopal, is adamant about physical activity being essential. Keep moving as much as possible. Have the rest of you found that makes a difference in terms of overall well being and recovery?
Physical activity needs to be optimized -- they told me to take three times around the floor three times a day, but that would be enough especially while neutropenic. My nurse prac put it this way -- your internal organs need that blood more than your muscles. So, it is not time to life weights and break down your muscles, run a marathon or anything like that. But another nurse said: "I can tell the ones that are going to make it -- they are the ones who are walking around." So, for what its worth, yes some activity, but if he is getting tired I would cut it off there. I still have to watch my activity especially in the heat down here in Alabama -- I have to listen to my body and not over-do it. That is what Keir needs to be doing as well. -- dave
Just like Abby I had a controversial BMB that showed more than 5% blasts but they believed the blasts were dying. To be extra sure, they waited a week or so and the second BMB showed remission. Just be prepared for not a 100% definitive result and trust what the docs tell you it means.
Blessings,
Julie
CLiff practically promised me a beating if I didn't do laps around the floor to stay active. He was right. The first time I didn't and I got pneumonia. The next time I did and never got it. Simple answer. If he is up for it, stay active
Ed
Glad to here that everything is going to plan and it sounds like he is doing well.
As much as it is hard to do, just try and focus on this session of treatment, once this is done then focus on the next round. There are so many different routes that this journey can take, there is no point worrying about the hardest one.
This is why you may feel that the doctors are being a little airy fairy, every single person has a slightly different road to travel.
Keeping strong healthy, not getting any additional infections should be your focus
xxx
I wish I could stop fixating on the bone marrow biopsy results. It is clear that many of you needed more than one shot at induction or had some unclear/inconclusive results and are around to post about it. This is a such a psychological challenge for me - to do as the suggestion says, take this one step at a time. As a mom, I guess, I just want to fix it and make it better. However, I don't have a wand and realize we are just going to have to "work the problem" a step at a time. Knowing this does not make it an easier task, though, I will admit. Keir is doing well tonight and eating a bit better. Not sure which, if any, challenges will come up tomorrow but for tonight, he feels good. Weekends in hospitals are kind of extra tough; so empty and eerie.
I so understand your need for definative BMB results. I agonized when my results were not conclusive but as Cliff has eluded to I have blocked out most of my Induction days. Just like when I was given the chemo only track becuase of Inverse 16-I set myself on a scheduel to be complete with ALL consolidation by Sept. This was due to the advertised 30 to 35 day recovery time for counts. Well guess what, it is now Sep and I am just headed (God willing) to consolidation 3 of 4. I am now planning to be complete by CHristmas-God willing.
AML is unpredictable some times and for thoses of us who like predictability it can be VERY frustrating. But somehow by God's grace I have accepted this path because I know what my final destination is (cure) even though the journey may be unpredicatble.
Prayers for a great BMB result for Keir!
Julie
You are doing a fantastic job. Reach back and pat yourself on the back. I am so happy Keir is still in great spirits.
I will tell you my bone marrow biopsy story. I get your anxiety. Between June 2012 and June 2013, I had no less than 18 BMB. Part of this was because of being on a clinical trial and having two institutions that unfortunately could not share smears, but that's it own issue. Point is, I actually became dependent on them after a while, looked forward to them, and to this day, predict based on my draw, what my results will be. It makes the docs insane, my husband and me crazy and I don't even know why I do it. I logically know I cannot change the outcome. It's bizarre, I know, but I got so worked up every time, believing I was relapsing that I made myself goofy. Please don't be like me - what I know now it that there will be a plan regardless of the outcome and that is the goal -Setting the right treatment plan.
So hang in there. I wish I could get the one young Girl at my institution, I met, to join our group, she did so well post transplant and we communicate frequently via text mostly. My husband spent much time talking her parents through the process.Her strength and determination are very much reminding me of Keir. She got bored, she got well, she is now ready to move on - she is about 120 days post transplant. I just think these younger folks bounce back really fast if they can get past the boredom.
Stay well yourself. Keeping you in thought always,
Andrea
And I agree with others. Keep him walking once or twice a day. That goes a very long way in how quickly he will recover strength when he gets out of the hospital. Make it part of his "job" to do each day. Just like taking his meds, etc. Its all part of it.
Keep us informed. I'm praying for you and Keir.
--Tina
Today was another "waiting day" - doctors came in and reported all fine so far as they can measure at this point sans bmb. As the day nears, the anxiety seems to get worse so I am very grateful for for all the encouragement and great advice.
Keir has been walking as much as possible - both to deal with the confined room (it's a very very small one!) and to keep from getting weak. He's about to have a shower and then afterwards will rest a bit and walk again. I am going to work hard on staying positive and calm.
The way I look at BMB's now (I think my 8th) Is no longer with wondering good or bad. It is wondering what's next. Keir will have a plan and his docs WILL have a plan and his treatment WILL continue and his journey to health WILL continue, the results just adjust the course of action. I believe he will have good results being young and strong, but if they are mixed or not full remission it will just adjust his and his docs PLAN OF ACTION and PLAN OF JOURNEY BACK TO HEALTH.
That really helped me in my journey to health. IF i was playing football and the leukemia scored a field goal, then my docs and I would plan for a touchdown to take the lead! :)
Breathe, know we are all with you and Keir and will be until he is back to health and back to the life he so deserves. YOU TOO.
Ed
In an extraordinary stroke of bad timing, I'm taking a "death and dying" course as part of my public health degree at DePaul (it's mostly online so I'm trying to continue since it appears I won't be working in the immediate future) and staying positive is really a challenge. I wish I had a printer here at Rush so I could print off all your wonderful messages and comments and read and re-read them at every difficult moment. As it is, I'm coming back to read them constantly and they truly do help. Keir and I are going to go for another walk after they mess with his tubing and I'm going to do some reading in my other course, the science of Chinese medicine. That should be a little more uplifting! I wish I could have dropped the other course, but I'm nearly done and there were no other options.
I had one question about getting through long hospital stays. The floor here (hematology/ bone marrow transplant) is SO small and quiet. It sometimes feels dreamlike. What helps you all get through the feeling of being so cut off?
And I can answer for Andrea (I think) SHE LIVENED THE PLACE UP herself. Befriending the nurses and even playing practical jokes. It might seem like they just want peace and quiet, but in my experience as well, they welcome friendship and some levity at times. Dont feel like it's a library. It is your place for a little while longer. remember that