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.
Wherever we are in our walk with this condition, i suspect dealing with uncertainty is a large part of it. For me, it is perhaps the worst part. When my son was diagnosed almost a year ago, my life pretty much upended and has been chaos ever since. Several of you on here have been my personal heroes in helping me - scraping me off the ceiling with my panic has gotten out of control, teaching me about faith and hope and joy, letting me share in your own struggles.
Yesterday I found out someone - a young woman with 2 children - relapsed after just short of two years post transplant. She had been doing well and was about to meet her donor, in fact. Her caregiver and I cry together a lot and they had reached out to me to be of great support back in November when Keir was preparing for what was to be his initial bone marrow transplant date (got postponed two months due to - well, rubbish, in my view!) Any time one of us relapses or we lose someone, it feels like a personal attack. In addition to being upset for the individual and their loved one, we feel this disease is once again 'winning' somehow. This woman is in re-induction therapy right now.
So I was wondering. Do you discuss Plan B, Plan C, etc. with your doctor? Does it help you to do that? For those of you who have had a bmt, would you do it again if you relapsed? Have any of you mastered the whole zen 'live in today only' thing and does that hold a key to this? Because I'm driving myself crazy....
Yesterday I found out someone - a young woman with 2 children - relapsed after just short of two years post transplant. She had been doing well and was about to meet her donor, in fact. Her caregiver and I cry together a lot and they had reached out to me to be of great support back in November when Keir was preparing for what was to be his initial bone marrow transplant date (got postponed two months due to - well, rubbish, in my view!) Any time one of us relapses or we lose someone, it feels like a personal attack. In addition to being upset for the individual and their loved one, we feel this disease is once again 'winning' somehow. This woman is in re-induction therapy right now.
So I was wondering. Do you discuss Plan B, Plan C, etc. with your doctor? Does it help you to do that? For those of you who have had a bmt, would you do it again if you relapsed? Have any of you mastered the whole zen 'live in today only' thing and does that hold a key to this? Because I'm driving myself crazy....
I think the first step is acknowledging and accepting that we have no control over AML. Then to have faith in God or what ever you want to call him and turn your worries over to him. It is hard, but so much better for your health and well being. I pray daily for my son and everyone else in this group and it helps me get to sleep each night.
I believe that everything happens for a reason and that what is meant to be will be, I must remind myself of this from time to time when I feel like I need to control things, but accepting it and making the best of it is what I try to do.
AML has brought our family closer together, just last month my husband's brother and his daughters visited with us and we had not seen them in 16 years, we are in constant contact now.
My son who is a psychiatrist has been called upon by the two different hospitals that he has received treatment from to do phone consults with two different AML patients that are having a tough time with their dx, so because he has AML he has been able to help others.
I hope and pray that his AML/MDS does not come back and I acknowledge that that is all I can do, there is no reason to spend the rest of our time together in a state of worry, better to take each day as it comes and enjoy every one we have together.
Hope this makes sense as I have typed it as it came into my head.
Take care!
Karen
I live more in fear of the common cold now, than I do of relapse. It is always in the back of my mind, but I'm much more likely to get a cold/flu/etc. The viral infections throw my immune system into hyperdrive and it starts attacking my blood cells.
Even that I can't let it get in the way of living my life. I didn't have chemo- I didn't have a transplant - I didn't fight to live in a bubble. I did all of those things to get my life back. I do take precautions to try to prevent infections, but I can't put my life on hold anymore for the what ifs. I just have to trust that things will work out the way they need to be in my life. Don't fight to live, but forget to live in the process. Make the plans. Take the trip. No one knows how long any of us is going to get. (Get the insurance, it comes in handy when things need to be rescheduled due to detours)
I need something positive and fun to look forward to -- get gets me through the bad days. I'm not saying everything is perfect. The ativan is still in the active med drawer. Its use is farther between than it had been -- I am 18 months out from BMT. Doesn't mean that everyday is perfect. I have issues before appointments. I haven't yet graduated from monthly appointments with my doc. Most months it is still multiple visits. I've had complications they don't normally see in one person.
yes, I'd do BMT again. If I had it all over to do I would have switched hospitals and done it during my first CR1, vs dealing with relapse. Who knows what would have happened with that -- guess it wasn't the path I was supposed to be on.
I certainly understand your fears. My son, Julian (whom you may have read about on here), was 2 years old when he was diagnosed last year in September. We felt lucky when he was declared "low risk" and was able to complete chemo only treatment. Sadly, from what I have learned now, 50% of those "low risk" folks still relapse. Julian relapsed in August and now we are on Plan B, which is a double cord blood transplant. He had the transplant yesterday. This is by far the scariest thing I have ever experienced in my life! The risk of treatment related mortality alone is obscene! I worried and worried every month after his chemo. I worried about relapse all the time, read statistics, etc. I know that things are different after treatment than during. For some reason, it is easier to worry after the fact. I have had some anxiety with this process. I would be crazy not to, but now instead of reading statistics and scaring myself more, I ask questions and I pray, pray, pray. Julian is not a statistic. He is my son, and he is strong. I believe that God will get him through this. God already knows the future. He is already there, but he reveals His plan one day, one moment at a time. There are so many things that could go wrong, but there are so many more that could go right! Hang in there.
Jacki