75 year old father just diagnosed with AML

Hi Ryan, AML can be a very aggressive form of leukemia. It often just sneaks up on patients before they realize anything is wrong. Once it gets started, without treatment, it does progress rapidly. I want to offer you some hope for your father. I was 65 when I was diagnosed with AML. To that point, I was just like your dad…healthy, active and seldom ever ill. Within 3 weeks I went from walking 10 miles a day to having less than 24 hours to live…the day I was diagnosed. That was 5 years ago. With chemo and a bone marrow transplant I am cancer free and back to living a full and active life.

Years ago, treatment for AML was very limited and there was little hope once diagnosed. We now have medications and treatments that can help AML patients live longer by slowing the progression of the disease.

I know you’re searching for answers for your father. At 75, he is reaching the upper age limit of transplantation. Though I mentor AML patients in my local cancer clinic who will be going onto transplant and in the past 4 years there have been several patients aged 68+ including two 75 year olds who had bone marrow transplants. (One at University Hospital in Madison). They’re all doing really well! Not everyone with AML requires a transplant however. Much depends on the mutations which caused the AML. Another factor would be if your father has any co morbidities that would impact his ability to tolerate a transplant. The tests that your father’s doctor is waiting for will help decide the best course of treatment.

If your dad isn’t eligible for a transplant, there are several potential treatments (chemo and meds) which may help keep his leukemia from progressing. We actually have a few members in the forum who are in a similar situation with AML but aren’t able to or have declined having a bone marrow transplant. Here is a great conversation started by @lindagi who had been receiving chemo with good results.
https://connect.mayoclinic.org/discussion/aml-age-78-taking-decetabine-venetoclax-no-transplant/
I realize this all is so sudden and a lot to take in! But this doesn’t have to mean the end of the road for your father. I’m here to answer any questions you or your dad may have so don’t hesitate to reach out. How is your dad doing with all of this?

Ryan, my husband was diagnosis with MDS and just 1% from AML in August of 22 at 68. He was a workout daily person and had been watched for years for a low white count (now we know that was MGUS) and he became really exhausted and could hardly exercise or even walk and his white count dropped significantly. So off to the hematologist and then bone marrow biopsy. From the biopsy saw oncology on Tues and chemo started on Thursday. Bam. After the first round of the strong chemo he got very sick and was told he wouldn’t be able to have a transplant but with a new program they started with PT they were able to get him strong enough and he had his transplant Feb 23 and is now a year out and the cancer is gone. Donor remains 100%. Be turned 70 in December and we weren’t sure he would get to that. So please keep him active and exercising as much as possible. Keep up his spirits but yes the transplant is said to be the only cure but we were going the path of the alternative options and now. Have your faith and live day to day sometimes. It isn’t easy and unfortunately for my husband it is Parkinson’s that is his issues now. Cancer is gone. Amen

Ryan- tell your dad Greg, thank you for your service. As a fellow Veteran please remind him he can get a Community Care referral if needed; it might be best to get a 2nd opinion. Do not lose hope. I have also found that Dr Google research may lead you down paths you do not want to take. When is his next appointment at VA?

Good morning Lori,
Thank you so much for responding to me so quickly. I cannot believe all the support you provide others within this support group, I feel like I am speaking with an angel. We have my father's appointment to discuss his treatment this Friday (starts treatment the next Monday), so all the information you provided on chemotherapy options are great to know going into that meeting. When we got the news, I hugged my father and he told me "We're going to fight this", so I feel like he's got a positive mindset going in. I pray for you and everyone else connected by this horrible disease and hope that one day no one else has to experience what you, my father, and others have.
Ryan

Thank you for your quick response and words of encouragement. I am so happy for you and your husband that he was able to overcome his battle with AML, and I pray you both remain strong and encouraged through his new hurdle with Parkinson's.

Ryan

Good morning Janetlen,
I will let him know and thank you for your service! My dad was in the Army and served two tours in Vietnam. Thank you for the information about the Community Care referral program, as no one has mentioned that to us yet. We were told the only two VA Hospital's that complete BMT are in Nashville and Seattle (that is if he's deemed eligible). The Madison VA Hospital is literally connected to UW Hospital where they perform BMT. My mother said, "The US government can send him across an ocean to fight their war but can't send him down a hallway for a BMT." The only medical care (insurance) he has is through the VA; however, he has "hospital coverage" through Medicare. Not sure if that makes a difference? I agree about "Dr Google", that is why I figured getting into a support group and speaking to people that are going through or have gone through this to be much better.
Ryan

Hi Ryan, Your dad has the best attitude towards the battle before him. “We’re going to fight this!” I know there are some people who don’t like to use a battle metaphor for fighting cancer but I really felt that I was fighting a vile invader. I had an army of medical professionals with a huge arsenal of weapons to help me defeat this enemy and a back-up support system with family and friends. The three rounds of chemo worked to get me into a brief remission and the bone marrow transplant sealed the deal…with the hero there being my stem cell donor. It was a battle of mind, body and spirit. Your dad has the spirit of endurance to help him get through some rough skirmishes ahead.

Hah, I’m no angel but I sometimes feel my survival has a higher purpose. ☺️ I didn’t have a mentor or anyone I knew who had AML or a bone marrow transplant. Even though I had extraordinary support from my medical team it’s not like they’d gone through the experience personally. It can really make all the difference when you meet someone who has walked the walk and is willing to take others by the hand along the journey. That’s why I’m here, to make sure you and your dad know there is hope. We all pray for a cure for cancer but in the meantime, we work with what we have available. There are some good options now, where there used to be none.

Here’s a little story about when I finally did meet someone else who had gone through the same AML/transplant journey. After that, I became a mentor myself. We don’t realize at the time but our journeys can become someone else’s survival guide: https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

You’ll learn quite a bit at the meeting with your dad and his doctor on Friday. It’s helpful to bring a little notebook with questions your dad or you would like to ask and also to jot down key notes. This is all new and there’ll be a lot of information flying at you at this appointment. I think your dad is up for the challenge and if anything needs clarification, you can ask here anytime.

Do you know if Greg will be admitted to the clinic for this round of chemo?

For anyone diagnosed with cancer I can say three things:
(1) Doing what your doctor wants you to do for treatment is a good survival strategy.
(2) Reach out to everyone you know for help.
(3) Hang on to hope.

Hi Lori,
Today we met with my father's doctor to go over his treatment plan. We learned the chemo will be a combination of Venetoclax (pills for 14 days) and Vidaza (shots in stomach for five days) starting this coming Monday. The shots will be given at the VA Hospital, but he will not stay there as long as everything goes well, and he tolerates it. I read and followed several of the links you provided me, and I was hopeful this would be my father's treatment plan, due to several posts from people saying how effective it was in conjunction with being more tolerable for the patient. The rapid genetic test showed he has a FLT3 mutation, which I know is not good news, and he has 53% blast cells in his blood (we are still waiting for the full genetic testing profile). The doctor talked about a medication that targets the FLT3 cells; however, it sounded like he's going to wait to see how my dad responds to the first round of chemo before adding that treatment regimen to my father's therapy. He said he will do another BM biopsy in 4 weeks and plan the next step. The doctor said my father is not eligible for a BMT at the VA, due to their policy being a maximum age of 75; however, he said he would make a referral to UW Hospital, should my father respond favorably to the chemo, but he said "in his heart" he didn't feel any doctor would consider my father for a BMT (it hurt, but we appreciated his honesty).

Thanks again for everything! I felt better prepared for today and more knowledgeable because of you.

Ryan

Good morning, Ryan. I’d been wondering how your dad’s treatment plan was developing. I think the last time we spoke Greg was waiting for the genetic report. He has the same acquired FLT3 mutation that set my journey into motion. I added 2 more mutations just to keep my doctor’s on their toes. LOL
FLT3 can be a challenging mutation to deal with however, as your dad’s doctor mentioned, there is an abrogating drug targeted to the FLT3 mutation that works well. It was also added to my treatment plan.

The first step is to knock down the cancer cells. So it’s important for Greg to begin his chemo program to stop the proliferation of the blasts. The meds he will be receiving have a good track record in helping get the disease under control. I think because of his age the chemo is scaled back a little to a less aggressive form that’s more tolerated by the body. As our bodies age, they don’t process drugs as well through the liver and kidneys. I was 10 years younger than your dad at the start of my treatment and was admitted to the hospital for 5 weeks in the beginning. My induction chemo and subsequent sessions were as inpatient with Cytarabine and Idarubicin infusions for 7 days in the hospital the first time and then just Cytarabine every 28 days for 3 months. I’ll admit it was pretty brutal. Now, thankfully there are meds such as Venetoclax and Vidaza that are much better tolerated but still effective and don’t require a lengthy hospital stay.

The abrogating drug is Midostaurin (Rydapt). I took it for 21 days following each chemo round, tolerated it well and was so grateful that the drug was available. It was a newer drug then and getting approval from Medicare took a call from my doctor.

As you probably figured out already, I’m all about information. 😉 So I found a good article for you about the FLT3 mutation which mentions Midostaurin and it’s mechanism for treating this mutation.
https://www.healthline.com/health/aml/flt3-mutation#symptoms
Your dad will feel some changes coming up in the next couple of weeks as the chemo starts working. Fatigue is normal (and frustrating for active people!) Because his immune system is seriously compromised it’s really important that he avoids exposure to infections and illness. Masking is a good idea around people in public settings. Think “covid training”…the rules still apply. Also, no gardening because of the risk of exposure to fungal infections.
Give your dad my best wishes as he starts his treatments! He’s got this! Keep me updated please. Hugs…