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How does someone “feel” with untreated AML?
Blood Cancers & Disorders | Last Active: Feb 24 11:52am | Replies (9)Comment receiving replies
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?
Replies to "Welcome to Connect, @mybeachbijou. Oh my goodness, your poor brother has been through so much in..."
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.
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I’m soon to possibly have SCT how was it for u hopfully I survive it