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

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?

Is chemo rough for aml
I was diagnosed and scared

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?

So, my main symptom is tired all the time, and achy. Most of my symptoms would suggest I have low iron. In any case, I have moved since I last saw the oncologist. I called my former oncologist for a referral. Just waiting to hear back from her nurse. Even if this is nothing it's past time to see an oncologist and get bloodwork. Thank you for the encouragement and your comment.
mmh

Welcome to Connect, @mmh515. What a harrowing story about your AML journey. That type of leukemia can creep up slowly and then Wham, it comes on like a speeding locomotive out of control during the last couple of weeks. I’ve been there myself and it can be one heckuva a nasty beast to get under control. But you persevered through some brutal chemo to achieve remission and have been healthy for 14 years! That’s outstanding success and it may not be over. The only way you’ll know is to call your hematologist or primary care physician to have some bloodwork done.

I understand feeling scared…no one wants to hear that they’re out of remission. But you’re getting way ahead of things and letting fear take over. I think a reasonable plan of action would be to get a check up. Because not knowing is equally as stressful for you! Sometimes just the action of moving forward can bring a sense of relief.

If there is something going on, then you can make informed decisions with your doctor with how to proceed. There have been new, less traumatic treatment options developed since 2011 for relapsing AML patients. So please, don’t toss away 14 great years without a fight. At least find out why you’re not feeling the greatest right now. It may not be related to your leukemia at all.
What type of symptoms are you having?

I was diagnosed with AML in 2011. I had a rash, and it was misdiagnosed at the ER twice as other conditions. When my symptoms got worse, and I couldn't breathe lying down, I returned a third time to the ER. By this time, both my hands and my feet were about two to three times their original size. I was immediately admitted to the hospital, as I also had double pneumonia. That night the dr. came in and said that I was being transferred to another hospital because my blood test was not normal and not consistent with just being sick with pneumonia. When I arrived, I was so sick that I barely remember that first week. Something around my heart was swollen is all I can remember them saying. I was put in the cardiac unit within what seemed like a day I was transferred to the cancer unit. I can remember a nurse saying it's the cancer unit but it's also general medical, so it doesn't mean you have cancer.
When I arrived, I remember waking up to a very concerned oncologist and hematologist. but I don't remember what she said. I can remember her talking to me that's all. They called my family and told them I was being tested for AML and would have a bone marrow biopsy, and the results would need to be sent to California for confirmation of what they pretty much already knew was AML. 5 days later the results came back, and I indeed had AML. I was 31 years old.
I started 2 different chemo's at the same time and stayed at the hospital for 31 days. I had several blood transfusions including platelets all through a pick line. I went into remission about the 22nd day in the hospital. I had to wait to leave until my neutrophils reached a certain level. I was so very happy to leave that room. I spent a lot of time in pain as the chemo burned me internally from my mouth to my rectum. I went to my oncologist about 4 times a week for about a month then less and less as time went by. Every month for 4 more months I had to be readmitted for maintenance chemo for 5 days every month. That was a breeze compared to induction. I continued to go to an oncologist for about 5 -8 more years. I had a sinus infection during maintenance chemo where my fever was extremely high 103.6 when I got to the hospital, and it went up before they were able to finally bring it down. I was in ICU for a week. My fever was so high in fact that I was delusional. So, several more trips to the hospital for platelets and blood transfusions.
That was almost exactly 14 years ago. I have been in remission ever since 2011! I haven't been feeling very well the last couple of days, and it could be nothing. but honestly, I quit going to an oncologist because I never want to hear those words your out of remission. So, I am kind of scared to even go to the doctor anymore. Do I regret having taken the treatment? no and I wasn't given much of a choice. It wasn't do you want to it was this is what we are going to do. Which at the time I was so sick I couldn't have made that decision. There have been some long-term effects. Would I do it again? probably not. Thats easy to say now though you never know what the situation will be or the decision, if it is yours, will be. I am thankful though for all the doctors and nurses who made that experience the best it possibly could be! They were excellent! -mmh

This is fabulous news about your mom, @kristenwhittle! She’s quite the trouper and gives hope to a growing number of members who generally don’t have a lot of options when developing AML at a later time of life when traditional regimens of Chemo or a bone marrow transplant aren’t appropriate!
The lymph drainage massage will really help her recover from her rounds of the chemo by helping to move it out of her body. I’m sure she’s impatient to get her energy back!
Thank you for sharing this wonderful news and congratulation your mum for me! Please keep us in the loop, ok?

Fabulous news about your mom, @kristenwhittle. I'm throwing confetti for you and your mom.

How was the appointment with the Lymphatic Clinic?

Hi! Thanks for sharing the good news update. I admire this generation so much. They can teach us all how to be resilient in difficult times and shining examples of how to face adversity with grace and courage. Blessings!

Update on my 92 year old mom with AML. She has been through the first two rounds of chemo. They have stretched her out to every 5 weeks and cut her decitabine in half. Just got her bone marrow biopsy results back and she is in DEEP REMISSION! No detectable leukemia! It’s amazing! Hoping we will be able to stretch out her treatments to every 6 weeks. She is starting to feel better. Still so tired, which is not like her. Had pretty b as d pitting edema in her feet and ankles. Started furosemide and then I discovered lymph drainage massage. It’s been amazing. Teaching her to do herself, and when I’m there I do it 1-2 X/day. Read The Lymph Book (highly recommend it) and found a great video. She has a referral for the hospitals Lymphatic clinic. Thank you to everyone that has shared on this site. You have kept us going during the early stages which make it seem impossible. Bless you all.