Newly diagnosed with AML (FTL3 TKD)

Tuesday my husband of 74 had a bone marrow biopsy, Wednesday morning the hematologist called and said he had Acute Leukemia, Thursday we were called to meet with hematologist at cancer clinic. (We are in Canada by the way so not a Mayo Clinic patient.) They are looking to start a 7 day injection (we go to clinic and then home), 3 weeks off plus a targeted additional drug. The hematologist yesterday they did not yet know all the other more specific indicators. The diagnosis was sudden. My husband is very active, in good health, walks every day. Now he has been told that if we do nothing he will live maybe 8 weeks. How do you make sense of it all? How do you even comprehend the complexity of what the cancer is? My husband's mother is 96 and still going strong, he believed he would be the same. Is their any hope? All the doctor would say is that if everything went wonderfully, transplant would be considered but his attitude was this was probably unlikely considering Rick's age. I desperately need some way to start making sense of things if I am to help Rick. We have been married for 47 years. How have you faced all of this?

Hi Maverick, Welcome to Connect. Here’s the beauty of this amazing forum. There are many of us who have had AML and we’re all here to offer hope and encouragment, especially to those recently diagnosed or going through treatment. We know what it’s like hear those words…you have leukemia.

There are members like myself, who have qualified for a bone marrow transplant. Several others have been able to stay in remission with the help of medications. There have been positive breakthroughs in treatment options for older patients, or people who aren’t able to tolerate aggressive treatments or the rigors of a transplant.

Your husband’s story is much like mine. I was perfectly healthy and active within 3 weeks of my diagnosis. In fact the week before my first symptoms appeared, I was snowshoeing in deep snow in the forest and never missed a beat. Four weeks later, I was told I had less than 24 hours to live. I had seen my doctor 3 weeks in a row, telling her I’d never felt this sick in my life. She hadn’t taken blood work until the 3rd appt. That was day I was diagnosed and admitted to the hosptial for 5 weeks. I was 65 at the time. I’m now 71 and back to enjoying my 2nd chance at life. I still walk at least 7 miles daily, exercise, travel, etc…life is pretty normal!

I know you’re trying to make sense of this all. It’s challenging to say the least. Some blood cancers can develop slowly, or in the case of AML, it can come on like a speeding locomotive. There is no rhyme or reason and there will be no way to determine when or how it started. The only option now is to move forward with treatment. While there is no cure for AML except the transplant, treatments can be quite successful.

As far as having a transplant, I’ve personally mentored patients who have been 75+ years and now in their 80s and doing really well. While there is no specific cut off for age, there are other criteria such as co-morbidities, emotional and psychological considerations, ablity to tolerate meds, that type of thing. So that is a discussion to have with a transplant doctor if and when the time comes. You husband may do well with his current treatment. Some types of AML don’t require a transplant.

There’s a “feels-good” discussion I think you and your husband will find uplifting. It’s between members who are similar ages as your husband, have AML and unable to have a transplant. Let me introduce you to @lindagi @dancouclanel4 and @sonieaml
I’m expecting by the description of the treatment plan that your husband will be taking Venetoclax and Vidaza or similar, the same as these members.
https://connect.mayoclinic.org/discussion/aml-successful-treatment/
When does your husband start his treatments?

Hi Jamie Lynn. I wanted to follow up with you to see what’s happening with the AML relapse. It’s disappointing to need chemo again and I hope your return to remission is speedy so you can go ahead with the BMT.
FLT3 can be a challenging mutaiton. There is a medication which I took between cycles called Midostaurin which targets the FLT3 mutation. Are those the pills you’re taking?
How are you feeling after your first round of chemo?

Hi @mavrick. I wanted to follow up with you to see how your husband is doing with his chemo treatments for AML. It’s been several weeks since you wrote in about his recent diagnosis. I hope everything is going well.
Not sure if you saw my original reply but here is a link: https://connect.mayoclinic.org/comment/1258078/

Is he hospitalized for his initial treatment?

Lori. ....doc took me off all chemo due to low platelts 1300
Is this normal..I am getting worried that I am not going to be in remission

Hi @bettersleep68. It’s not uncommon at all for treatment to be paused temporarily to allow blood numbers to rise and the bone marrow given a chance to rest. I know it can be so frustrating and a real hit on the morale when you just want to get this over with. When’s your next set of labs?

Next draw Monday. They want the platelets to be
50,000 to continue chemo...just so frustrating and I want to get into remission..bless you for all the work you do and encouraging all of us

How can you tell if you are in remission...without bone marrow test

Good morning, @bettersleep68 Everytime I type out your @name, I have to wonder about the origin. Especially today after I woke from a restless night…unusual for me. I’m thinking ‘better sleep=nap’ today 😁

I definitely can relate to your frustrations of delaying chemo. Feels like 2 steps forward and 2 step back, doesn’t it? Cancer treatments can be a test of endurance and tenacity for sure. The lessons I learned…there is absolutely no rushing the treatments, results or recovery! Having no alternative, I really ended up honing my patience skills going through chemo and then the bone marrow transplant. Over a 8 month period there were countless days of 2-5 hour med infusions, waiting rooms, recuperating time. I later had an issue that resulted in more twice weekly 3 hour infusions for several months. Tick tock. LOL. Besides a lot of napping, my iPad got a workout binging on books, movies, series, audio books, writing, etc.. All that forced free-time became a period of introspection and growth. I swear, everything felt new. Over the months, I got a chemical peal, new hair texture, I lost 40+ pounds, ended up with someone else’s bone marrow and a new blood type. Basically, the end result was Lori 2.0 😂

Where I’m going with this is, as frustrating as it feels having to wait, it can’t be helped. Your bone marrow goes through a lot of trauma in the effort to rid it and your body of cancer cells. The initial chemo that you received knocked down those cells but in the process depleted your blood cells too. It can take time between cycles for the cell process to ramp up again. The lowest point is generally 10–14 days after the chemo cycle with a slow, steady climb after that.

Our bone marrow, when healthy, makes about 400 billion platelet cells per day! When compromised, that output number can be greatly reduced, along with the fact that platelets only have about an 8 or 9 day life span. Your doctor wants to see your numbers at least 50 billion per liter. Not knowing what your current rate of production is, it could take a little more time. I know…blargh…
So, in the meantime, until your platelet numbers are high enough to have another round try immersing yourself in activities you enjoy. But NO knife juggling. 😁

On that note, here’s a list of things to keep in mind with the low platelet level:
~flossing your teeth gently using a soft bristle toothbrush
~use moisturizers and lip balm to prevent skin dryness or cracking
~take care when using knives, razors, or sharp objects
~wearshoes and socks to protect your feet
~remove tripping or falling hazards

From what I’m gathering, your red cells and neutrophils must have bounced back to decent level?

One of the ways your doctor checks your progress is with a
peripheral blood smear. This test can show blasts in your blood. A pathologist views a sample of your blood beneath a microscope to check for elevated or abnormal-looking blasts. (Immature white blood cells)
This can be part of a CBC with differential. The lab tech will note any immature white blood cells appearing in peripheral blood circulation.
Do any of your recent tests mention the % of blast cells?