Acute myeloid leukemia (AML): What can I expect?

Sometimes we just need that little nudge from an outside source to do what we already knew we should be doing. LOL That was a weirdly constructed sentence but I think you get the drift. It’s never a bad idea to establish a good medical base after a move. Hopefully you get the referral soon.
Some insurances don’t require a referral for a specialist. Do you need one?

Is chemo rough for aml
I was diagnosed and scared

Good morning, @bettersleep68. Well golly, nothing like a medical adventure to start out the new year. Six years ago I began 2019 the very same way with a diagnosis of AML, Acute Myeloid Leukemia.
It’s ok to be scared but don’t let it consume you. There are treatments for this form of leukemia. I won’t lie, some of them are a little harsh. But the drugs do the job and can give hope for a healthy future.

Acute myeloid leukemia is treated based on the acquired mutations associated with the diagnosis. There are some mutations which can make the disease more aggressive or difficult to treat and the treatment has to be equally as aggressive. With less aggressive mutations there are other treatments. Factors such as age and co-morbidities can influence the treatments as well. Your doctor will make the determination by taking blood work and a bone marrow biopsy. The results of these tests will show the extent of the disease, the health of your bone marrow and check for mutations, along with other information gathered.

So let’s tackle this together head on! There will be a lot of information coming at you from your doctor and it can feel overwhelming with all the terms and new vocabulary words you’ll be hearing. I can help you with some clarification, along with other members in Connect who have or had AML. You’re not alone here. ☺️

If you haven’t already, a consultation with your hematologist/oncologist will be coming up. You’ll most likely have a ton of questions you’ll want to ask such as:
Will I need more tests? Which ones?
Will I need treatment?
What are my treatment options?
What are the potential side effects of each treatment?
Is there one treatment you believe is best for me?
I have these other health conditions. How will they affect my treatment and disease?
How will treatment affect my daily life? Can I keep working?
How long will treatment last?
Are there any restrictions that I need to follow?
Should I seek a second opinion?

So take a little notebook along with you. And also if you have a partner or friend it can be helpful to have another set of ears!
Has your hematologist/oncologist discussed treatment options with you? Have you had a bone marrow biopsy yet? Any mention of mutations?

Yes...bone marrow blast 40,% going this week to discuss treatment..I am 74 years old and other than this healthy. I want to thank you for your encouraging words..I would appreciate all the information I can get...you did say you had aml and how long have you been in remission..thank you again.

I’ve been in a durable remission for almost 6 years. Though I did have a bone marrow transplant. The mutations responsible for my AML put me in a higher risk for relapse and the transplant was my only option. I had 85% blasts at the time of diagnosis. I was 65 when this adventure started and now I’m 71, feeling back to 99% normal…active and healthy.

I believe that knowledge is power and it’s important to educate ourselves with information about a diagnosis. But be a little cautious about searching online for AML information. It can be intimidating to read about. Especially looking at statistics. They often don’t reflect patients having treatments. So it can be a bit deceiving. Here are two reputable sources that will at least be helpful with how AML progresses and what can be done to get the disease wrangled into remission or potentially cured.

Leukemia/lymphoma Society
https://www.lls.org/leukemia/acute-myeloid-leukemia
https://www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/diagnosis-treatment/drc-20369115
When you learn more from your doctor we can discuss the particulars of the treatment plan if you have any questions. I’m not a doctor but have gleaned a fair amount of knowledge over the past 6 years so I can often add some clarification. ☺️ Right now, since you don’t know what’s being recommended for treatment, it’s too soon to speculate on which type you’ll be having.

Don’t be afraid to ask questions of your doctor but as I mentioned it can be helpful to have them written down on your phone or a little notebook to make better use of the appointment time. That way it’s easier to stay on track. Let me know what you find out, ok?
Stay strong, stay positive, you’ve got this!! ☺️

Thanks for this link. My side effects from chemo have been mostly nausea and initially changes in taste buds. Those have both changed over time. I have lost 50 lbs and was overweight so AML was my “wygovia” weight loss treatment of sorts ;-}
I elected NOT to have a Bone Marrow Transplant however my latest Bone Marrow Biopsy showed I am in remission. When I relapse my medical team assures me there are new drugs that they will suggest to get me back into remission. Praying all of us in remission stay there for years to come!

Would like to hear more stories of your aml journey...I too pray for remission for all of us ..

Each person with AML will have their own, unique story to tell. You’re just at the beginning of your story with the recent diagnosis of AML and haven’t gotten a treatment plan mapped out for yet. So if you read through some of the stories of my odyssey or other members with their AML journeys, this may not be at all what you experience.

While some of the stories may be intense, we each got through it the same way…one day at a time and life on the other side for most of us is pretty darned good!

Here’s a discussion I started a few years ago where I’m joined by a lot of friends who have gone through AML and onto having a bone marrow transplant. We don’t all need them however! We have plenty of members on medications to hold their disease in check.
When you learn your complete diagnosis and treatment plan I’ll find members who are on the same meds for you to speak with. ☺️

Anyway here’s my story:
My BMT story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
Another story published by Mayo when I had the honor of meeting a young woman and her family whom I mentored through her transplant.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
Besides mentoring on Connect I work through our local cancer center to mentor patients with AML or going on to transplant. Through that association I have developed a friendship with one of the women I mentored. She and I are as close as sisters now. She had AML, but didn’t require a transplant. Her mutations were such that she had a lower risk level of relapse. She is now 3 years post treatment of 5 rounds of chemo and doing great! Back to normal and no signs of disease. So AML runs the gamut. Life holds no guarantees so we do the best we can and enjoy the gift of life every day.

Thank you for the response,..I find out Wednesday what my treatment plan is and will let you know
.....have a great day

Hello ....went to doctor
..we are going to do the v and v treatment...repeat bone marrow in 2 months..she said at me age 74 ...aggressive treatment would be hard for me..do you know anyone who did the v and v and had good results..I am worried I will not go into remission....thank you for your time