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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
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.
Replies to "Yes he did and it failed. He is needing to decide in a very short time..."
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…
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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?