Relapsed AML: Anyone choosing no treatment?

Good morning @kpurtill Most members in Connect are people just like you who come to the forum for support. We’re not able to diagnose or offer treatments but we are able to use our shared experiences to help each other.

I’m one of several members here who have had AML. My story is a little different than yours in that I had 3 mutations which made it unlikely that I’d stay in remission so my only option was to do nothing or go through with the bone marrow transplant. While it was an arduous journey, I’m 4+ years post transplant and in a durable remission. Now at 69, I feel fabulous and have the rest of a natural life ahead of me. I would do it again in a heartbeat.

It’s obviously a very personal decision on whether or not to pursue treatment at this time and I surely understand wanting to go out on your own terms! Mutated cells can make it difficult to treat AML because they have already bypassed your immune system, tricking it into not recognizing the fact that they are cancer cells. So they will keep proliferating. You may not notice much for a couple of months.

As these immature white blood cells called Blasts start crowding out the healthy red blood cells, you’ll begin to have more symptoms. Exhaustion, weakness. You may start feeling as though you have the flu with fever, fatigue, cough, night sweats, and severe anemia. Your immune system will be seriously compromised with little to no ability to fight off any infection.

You may need blood and or platelet transfusions to keep you going for several weeks/months but eventually that will no longer be helpful. From my experience, if you don’t develop an infection or illness, the ending is very peaceful. In my case, I was a day away from crossing over that rainbow bridge and honestly, I would have just fallen asleep and that was that…

Age can be an influence on treatments. Generally after the age of 70-ish it can be a little more of a risk with the transplant. But if there are no other co-morbidities and you’re in good health, I’ve mentored future transplant patients at our local cancer who have been as old as 75 and they’re doing great.
So from my perspective it was worth feeling pretty crumby for a few months while I became a bionic woman! I now have a second chance in life with cells from an unrelated donor and feel like every day is this amazing gift.

I get that you’re not eager to go through induction/consolidation again. That was a bugger. There are other drugs on the market to help slow the progression. Has your doctor discussed any of these treatments for you?

I've been told about an option of one drug but really just choose to be drug free.
I was not as close as you, but they said I'd have two weeks left if I didn't do treatment in 2021, and yes, I can imagine I would just go to sleep and not wake up at some point. I wasn't in distress or too much pain, so I'm not afraid of it.
I'm more wondering if someone has an idea of timeline when 2 our of my three markers have reappeared, though still at a low level. A year, two, three? Until it becomes full-blown AML
Thank you so much for your input! I appreciate it. And I'm so glad you're doing so well and loving life!!
Kathy

Good morning, Kathy. AML can get worse very quickly if not treated. You mentioned that the return of mutated MPN1 cells were first seen in the BMB and now in the peripheral bloodwork. Myeloblasts aren't typically found in the circulating blood of healthy people. By the time that happens, it’s generally from overcrowding in the bone marrow and these over-proliferating cells are being pushed out into the blood stream.
It would be difficult to know how much time you have left but you’ll get a little better idea of this with your next 2 or 3 blood tests. It will show a trend in how quickly this escalating.

I respect your decision and your pragmatic approach to this. In all honesty, I felt this was an easy exit too…but I wasn’t ready yet and decided to fight the battle of a lifetime. (And it felt like it! LOL) But I can also understand if you’re not willing to go through all that chemo again. I’m here anytime you want to talk about it with the same level of pragmatism.

Your hematologist oncologist would be the key person to provide a timeline for you. It would also be important to discuss the end game strategy with your doctor. If you’re choosing no treatment. it will be important to decide whether you’ll forgo transfusions as you become more anemic or if you’ll opt going to hospital if needed. Do you have a DNR Medic Alert bracelet?

Kathy, do you have friends and family around?

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.

I saw your post in which you ask "one, two, or three years?"

AML can develop shockingly fast. My cancerous cells in the peripheral blood increased at a rate of 10% per day. That is a doubling every 5 days.

With no treatment, AML can kill a patient in a few weeks. In light of this new information, it is ok to reconsider your previous decision.

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 😊

I'm sorry you've had to endure so much!
I'm aware of how quick it is once it becomes acute, having been there before, my question is about how long the genetic markers take to become AML.
The almost 5 months in-patient treatment got those down to zero, but now they're beginning to show back up. At first detected in a bone marrow biopsy, then another biopsy and showed very low level in the blood too, and since then I've had 2 more blood tests that show 2 out of three markers positive but growing extremely slowly.
My doctor thinks I'll have roughly a year before onset/death if I choose no treatment, but it could be 2 ish at this rate. That's awesome if I have 1 or 2 good years left where I have no chemicals making me sick. I'll be able to travel here and there, do my pottery and spend amazing time with my children. I want to stay well until I'm not. I don't want to take meds that will make me sick.
I am totally at peace with all this, just trying to find out if anyone has watched their markers climb slowly like this.
What markers did/do you have? Mine are NPM1, IDH2 and FLT3.

I don't actually know what my markers are. I saw a pathology report 3 years ago, but I did not know enough to interpret it. I have to rely on my doctor for that. I do know that I do not have the IDH2 or FLT-3 mutations because I became aware of targeted therapies for those mutations, and then I asked my doctor if those therapies were relevant for me. It turns out that they are not relevant for me.

My next major diagnostic procedure is a PET scan. After that I will ask my doctor about getting up-to-date genetic information about my sub-type of AML. After the PET scan my treatment plan might change.

I am currently getting Ventoclax and Vidaza. I am tolerating them well.

I wonder if your doctor is monitoring you using Measurable Residual Disease ()MRD)
techniques. I have relapsed, so they don't have to go looking for AML. They already know it is there. If I get into remission I would be interested in one of the MRD measurement techniques. Hopefully they could produce actionable information.

I'm not sure where you are, but I'm in Atlanta and Northside Hospital has a nationally acknowledged BMT unit, with state-of-the-art, extremely sensitive MRD testing. I feel fortunate to be in their care. Next time you see your doctor ask her/him what your genetic mutations are, they determine prognosis and treatment, but if you reach remission 🙏 they'll test for these every couple of months for years. I'm tested every couple of months with bone marrow biopsies thrown in as needed.
The return of 2 of my 3 was first found in a BMB in June but became detectable in the blood by the following month.

I have yet to speak with them about the end game. I will do the transfusions, more than likely, but I guess it depends on how I feel when I get there. I'm thinking I will though. I do not have a DNR bracelet, and thank you for suggesting that, I hadn't thought that far ahead. I have no blasts yet, or didn't in the last BMB in early June, but I'm hoping to have another in November so we can keep an eye on that. So right now, just an extremely small number of NPM1 mutations and a teeny tiny amount of IDH2, which has grown very slowly over the past 4 months which is what they're basing their time frame on.
I'd love to keep talking to you, it's very helpful to have someone who respects my decision!
I am surrounded by friends and my three adult children. My eldest wants me to go live with her early in the new year so we can maximize time spent together. I'm very fortunate!