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@rhskin911

Hi there, I’m on here just to try to get some questions answered for my father. He was just diagnosed with AML and to be honest, I’m not very confident in the dr. He missed this diagnosis and didn’t think he needed a bone marrow biopsy. Long story short, he was hospitalized and very ill and the hospitalist ordered the biopsy and we got the results this past Friday. They want to do chemo both oral and IV. I have requested an appt to have another Dr look at him. We’re waiting for the mutation test yet. What was process for you when you started treatment and how did they determine to do BMT for you? My dad is 83.

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Replies to "Hi there, I’m on here just to try to get some questions answered for my father...."

Hi @rhskin911. It’s interesting that your dad’s doctor missed the AML diagnosis too! My primary care doctor missed it 3 weeks, with me rapidly declining between each subsequent appt a week apart. A simple blood test the 3rd appt had me rushed to the hospital where I spent 5 weeks, then another week every 28 days for the chemotherapy.
As I learned later, from my hematologist oncologist and my transplant doctor, AML is not subtle and my PCP missed the boat completely on this one! As you can imagine, she is no longer my doctor.
I’m sorry to hear your dad has AML and that there was a delay in getting his BMB. As you’ve found out there are several key elements to the biopsy. The cytogenetics result will let the doctor know the specific gene mutation(s) that has caused this blood cancer. That will help dictate the specific type of treatment. There are targeted meds for some of the mutations.
I can certainly understand your lack of confidence in your dad’s doctor. Getting a second opinion never hurts…two heads and all. However, just so you are aware, depending on the degree of the disease (there is no staging), AML can escalate rather quickly so treatment should be started soon after determining the type of mutations.

As we age, some of the standard aggressive chemotherapy can be very taxing on the body. And to be honest at 85 your dad most likely wouldn’t be eligible for a BMT because of the challenges of the meds and the transplant itself. However, the really good news is there are treatments available for adults who aren’t able to receive a transplant. We have several members who have benefited from these meds. While the meds are not a cure, they can help control the disease.

This discussion in the forum might be helpful with information about the types of drugs your dad’s oncologist may be suggesting for him:

~AML, age 78, taking Decetabine/ Venetoclax, no transplant
Started @lindagi and joined by @immaninja and several other members.
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
Your dad’s immune system is highly compromised making him vulnerable to illness, so it’s important he try to stay as healthy as possible. Checking his temperature a few times daily can help in detecting any infections. If it reaches 100.4 call his doctor right away. Is your dad still in the hospital?

I was diagnosed with Pancytopenia on January 29th. Got to see a hematologist on March 19th, who ordered a bone marrow biopsy, which was done on April 2nd. Next appointment was three weeks later, April 23rd. I was told I have MDS, which is a blood cancer. Apparently all the tests weren’t in, as I made another appointment for May 8th to see what the prognosis is. I was told it is MDS high risk. The oncologist in Bismarck recommended I go to Mayo, as they may be better with testing. So on to Mayo June 6th, where they wanted their own biopsy done. Was told I would have a video appointment when the results were back, 2 to 3 weeks. A week later, the Doctor from Mayo called, said they wanted me out there as soon as possible. I was then told the MDS had morphed into AML with the inv(3) mutation. It is very rare and very aggressive, also very difficult to treat. I was told they see 5 people a year, at best, with this mutation. I will be here at Mayo for a month, and have an appointment tomorrow with the transplant people, suppose they will tell me if I am a candidate? This is getting too long, but hopefully it can give you an idea of how long it took for me to get anywhere with this journey! Good luck to your dad, hopefully they can treat him so he can still enjoy his life! ❤️

Hi @rhskin911, Just wanted to check in with you to see how your dad is doing with his AML diagnosis. By now he should have gone through a couple rounds of treatment. Has there been any positive changes to his health?