How does someone “feel” with untreated AML?

Welcome to Connect, @mybeachbijou. Oh my goodness, your poor brother has been through so much in his lifetime. I’m an AML survivor after having developed this generally aggressive form of leukemia and had a bone marrow transplant.
I can tell you from experience, that the last 3 weeks before diagnosis, I had ‘flu like’ symptoms, developing a severe cough, debilitating fatigue/lethargy and a sustained fever of 102. Yes, I did see my PCP 3 weeks in a row…failed to diagnose because she didn’t feel blood tests were necessary. Results from a simple CBC would have been obvious.

This does come on gradually at first with the proliferation of immature white blood cells. They eventually multiply to the point of overcrowding the healthy red blood cells in the marrow and start spilling out into the bloodstream and health declines rapidly. Until that happens there may be minimal symptoms. Initially I didn’t have any symptoms until 3 weeks before my ‘almost last day’. Quite frankly, in my case it would have been a very peaceful way to exit this life. There was no pain. I just wanted to sleep all the time. The decline can come on rapidly and honestly, without treatment, there is no reversal.

You mentioned your brother had the chemo for a bone marrow transplant with his diagnosis for MDS. That can be a precursor to AML. A transplant is the only ‘potential’ cure for AML. Did he actually have the transplant?

Yes tuff road to negotiate I’m doin chemo now to prepare for SCT an also wondering if it’s worth it or stay with meds an transfusions

I’m soon to possibly have SCT how was it for u hopfully I survive it

Hi Howard, I’m going to answer this question about SCT in your similar post with the MDS support group. ☺️

https://connect.mayoclinic.org/comment/879865/
See you there…

Great to hear your journey an I hope I make it thru like u did I will be thinking of your words if an wen my SCT begins for now I’m on chemo meds to lower my blast cells to make me eligible to have SCT long road ahead but knowing your story keeps me positive

Yes he did and it failed. He is needing to decide in a very short time how he wants to live his last 12-18 months. He has the most aggressive type of AML.
The chemo treatment leading up to the bone marrow transplant has completely destroyed his energy level. Then, his first day back from the hospital he fell and broke his hip. So he went into a rehab facility and has been there ever since. With the broken hip he had to learn to walk again. And he still has a ways to go. So we're looking at palliative care at his home. We're talking about a crazy chance on more rounds of chemo that most certainly will destroy his quality of life. So thank you for being honest and upfront. When my mom had bladder cancer she was at MD Anderson. And the doctors there were very kind and told her both options. How it would be for her quality of life if she continued with chemo just for symptoms because what she had was not curable. Or how she would be living the rest of her days without treatment. And the most kind, humane, and best way to give her quality of life for her last 18 months was to do nothing. So we had a great time during that last year and she was only bedridden for the last two months. My father died with stomach cancer and he chose to "fight the dragon". 18 months of pure hell. We all watched both my mom and dad go through some very different scenarios. Now my brother is at that same point.

I’m so sorry you and your family are facing yet another story of a loved one with cancer. It’s so disheartening to hear your brother’s transplant wasn’t successful. AML doesn’t play fair, I can attest to that. My case with AML had 3 mutations that make it very aggressive. The immature cancer cells can be very wily and adaptive. Most die off in the heavy chemo sessions but some can go dormant or mutate into another iteration which can circumvent the chemo! The cells can reemerge and start all over again. So it’s a very difficult journey for sure.

As your brother becomes weaker, his immune system, which is already compromised will leave him very susceptible to any bacterial, fungal or viral infection. His doctors may suggest having him on long term antibiotics and an anti-fungal regime as an artificial immune system replacement.

I agree, if he’s so weak more chemo infusions would be really rough on him. Has there been any discussion about the use of an oral abrogating medication such as Midostaurin or Enasidenib? They are directed at what is the most damaging or dominant mutation such as the FLT3 or IDH2. I’m not a doctor so I don’t know if they’re appropriate for him but there are newer, targeted drugs on the market that can help slow the progression of the disease.

When his transplant failed, was it from GVHD or did his new cells not engraft completely?

Hello @mybeachbijou. It’s been quite a few months since we’ve connected and I’m wondering how your brother is fairing with his AML journey. I hope he’s comfortable and that he’s been able to enjoy his time with family and friends. If you have the opportunity, please let me know how everything is going for your brother and all of you. I know this isn’t easy…

I hope your brother was able to talk with his doctor for advice. I am not qualified to offer medical advice. All I can do is to relate my own experiences.

For me, untreated AML was exhausting. Physical actions became increasingly difficult. Two weeks before diagnosis I noticed that I had to stop walking on a treadmill. I could not walk at even 2 mph without my heart racing and getting out of breath. I rapidly went downhill from there. After diagnosis I drove myself to a lawyer to get a medical power of attorney drawn up. Walking into the building was difficult. My resting heart rate went from about 60 bpm to 100 bpm while lying down.

I had to start using a wheelchair when I had to go the doctor, and it was still exhausting. On the day when I was admitted to the hospital to begin chemo, I had to walk from my bedroom to my condo's front door to meet a guy who was to push me in a wheelchair and then drive me to the hospital. The short walk from my bedroom to the front door was the hardest physical exertion I had ever done. I was not sure if I would make it, but I did it.

At that point I was about one week from dying. To summarize, with untreated AML, someone can go from feeling a little tired, to being constantly exhausted, to dying in about 4 weeks.

What it would be like in the final week I can't say. I can only hope that the period of suffering will be brief. What I would want from the people around me is calm, so I can have peace of mind.