Newly diagnosed with AML (FTL3 TKD)

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?

My husbands blasts in the blood were at 2% for several months, then went to 16% but have gone down to 9%. His bone marrow biopsy in January showed 8%. He was in a clinical trial using low dose chemo to slow down his MDS until January but was removed from the trial. He is now in hospital as he has no balance and has lost a lot of strength in his legs.

My husbands blasts in the blood were at 2% for several months, then went to 16% but have gone down to 9%. His bone marrow biopsy in January showed 8%. He was in a clinical trial using low dose chemo to slow down his MDS until January but was removed from the trial. He is now in hospital as he has no balance and has lost a lot of strength in his legs.

Hi @loribmt

Hope you’re keeping well!

Here’s an update so far FTL3 TKD are undetectable. I have pesky inversion 16 that just keeps coming back. I was close to remission and developed a 5cm mass in my chest so I had to stop cancer treatment and only take antibiotics. After that I got sepsis from a picc line and have only just now had negative blood cultures.

I’m starting chemo conditioning on 28th of Aug for 10 days and my stem cell transplant is on 9th Sep. the only thing I’m very worried about is that when I stopped the cancer treatment my MRD showed 12% of cancer (about 2 weeks ago) now I’m going into a stem cell treatment with active cells if they don’t get eliminated with the chemo beforehand. This is my 2nd time going through this nightmare journey and I don’t want to relapse after transplant. Any suggestions or advice you have would be greatly appreciated!

Nothing about AML treatment is straight forward, right?! Sorry to hear that you have the additional worries about 12% cancer still present going into transplant. Conditioning chemo is very powerful, so hopefully it will kill all the remaining cancer.

Once your new immune system starts working, it should continue to seek out and kill cancer cells.

I went into my transplant without a trace of cancer, but getting to that point was a rough journey for me. I had to go through induction chemo twice.

I wish you all the best as you start your transplant journey tomorrow! Praying that the transplant will work well and bring healing to your body!

My husbands blasts in the blood were at 2% for several months, then went to 16% but have gone down to 9%. His bone marrow biopsy in January showed 8%. He was in a clinical trial using low dose chemo to slow down his MDS until January but was removed from the trial. He is now in hospital as he has no balance and has lost a lot of strength in his legs.