← Return to Relapsed AML: Anyone choosing no treatment?

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@timt347

The questions you have should really be asked of your doctor.

I was diagnosed with AML three years ago. I had a bone marrow transplant. I had a relapse about a year ago. I had a conversation with my oncologist about what the end would be like, not because I was forgoing treatment, but because the prognosis looked very bad. I could tell you what he said, but I won't because I don't think it would be ethical to do so.

Before making any irrevocable decisions, I think that it would be prudent to talk to your doctor first. You might learn something new.

I have thought about this sort of thing myself, as it applied to me. When I relapsed, a friend who is also a nurse said that if it was her she would go lie in a beach for the next few months. I did not do that.

After I was diagnosed with AML, it took a couple weeks before I was hospitalized to begin induction chemo. The doctor was trying to find out if I had a mutation that could be targeted with one of the new drugs. It turns out that I did not, so I got the same induction chemo that I would have had 50 years ago.

By the time I started chemo my white cell counts were high enough that I would have been dead a week later. That is where our stories start to diverge.

I am 63 years old now. I was 59 when I was diagnosed. I told my doctor when I was first admitted to the hospital that I had a particular horror of being in a t state of being unable to communicate but still conscious, and being in that state for months. He understood. He told me to not worry. He said that whatever happens will happen much faster than that. I actually got some comfort from his response, and it made it easier to proceed with the initial treatment.

Induction chemo did not work for me. I still had a high level of bad cells in my blood after the chemo. They discharged me, and I came back three weeks later for more. This time they gave me a drug that I had responded to previously, but at about a 30 times higher dosage. I was afraid that 30 times more would produce side effects 30 times worse, but the doctor told me that was not the case. I did it. I was discharged again for a few weeks, but although I was technically in remission, the leukemia came back within about a month, and I went into the hospital for a third time for what they called salvage chemo, which was also the same high-dose chemo.

The third time I did not fare quite so well. I develop sepsis. I coded, but they brought me back from the brink with the help of norepinephrine. I spent a few days in the ICU, and then I was discharged again. By this time they knew that any remission would not last, so they hustled me into a bone marrow transplant shortly after I was discharged. The transplant had been in the planning stages for six months.

There were many things that could have derailed the transplant. I was in poor condition. I had a lung infection. They had difficulty finding a donor. I was single at the time and I had to do all the preparations myself even though I was in a debilitated state, but I did it. I had the transplant seven months after diagnosis.

I spent three months in a hotel suite near the clinic, and then I was discharged again. It took about nine months more before I regained something resembling normal energy levels, and then I went back to work part-time.

So what's my point? I have left out a lot of details. I did some difficult things. However, the difficult things did not happen all at once. I developed psychological techniques for dealing with difficult procedures in the moment. (I have forgotten much of what made the procedures difficult at the time, possibly because fentanyl is known to produce an amnesic effect.)

If someone had looked at me five years ago and asked whether I could do the things that I have since done, they probably would have said there is no way this guy can do that. I would describe myself as a highly sensitive person, and someone who has had lifelong problems with anxiety. Nevertheless I did it. (Maybe I need to re-evaluate what I am capable of.) I would do it again. I expect to do other hard things before I'm done.

I thought hard before responding to your post. Is it any of my business ? Would a response do anybody any good? Because my own life span is probably only a few months, and I have thought about these things, I decided to respond.

I am currently receiving Venetoclax. It is much easier than induction chemo. My hope is that I can hang on long enough that something will change. Maybe there will be a new technological advance in the treatment of AML. Maybe there will be a new drug. Maybe an immunotherapy based on CAR-T or NK cells will become available. Maybe someone will figure out a way to use Venetoclax for a longer time. Maybe I will be a statistical outlier at the tail end of the probability of survival curve.

The only thing I can really suggest that makes any sense is to talk to your doctor.

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Replies to "The questions you have should really be asked of your doctor. I was diagnosed with AML..."

Thank you very much for your thoughtful response. I have talked to my doctor and emailed with another leukemia research doctor, but your input is important.
I, too deal with general anxiety, live alone, but am not in a good financial position which makes it hard, too. I think it's possible I'd have another go at this thing if I was financially able and had the support of a partner. You seem to be an incredibly strong and resilient person! Thanks so much for taking the time to reply 😊