Newly diagnosed with AML (FTL3 TKD)

Posted by jamielynn777 @jamielynn777, Jun 10, 2024

Hi I’m Jamie, 39 and I was diagnosed on 5/26/24 with AML mutation FTL3 TKD.

I live in Dubai and can’t really find a lot of information or stories of others with a similar diagnosis to mine. We are still waiting for the BMB to come back as it is sent to the Mayo Clinic with a turnaround of 2 weeks. The general plan is to complete 7/4 and so far I have completed 1 cycle and will start Midostaurin tablets for 14 days soon. If anyone has the same diagnosis, can you please share anything helpful as I’m feeling very scared at the moment.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

No....I don't thinks so
But I will ask thanks

REPLY
@loribmt

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?

Jump to this post

Thank you for taking time to write that sweet and inspiring note .. I am just impatient and want to get well....have a blessed day

REPLY
@loribmt

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?

Jump to this post

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.

REPLY
@daleanddonna

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.

Jump to this post

Hello, @daleanddonna. I can’t help but think, Team Dean and Donna…united in this major life challenge you’re both facing with his diagnosis of MDS.

I’m so sorry to hear about the lack of balance and loss of strength Dale’s experiencing. I remember being much the same after being bedridden for 5 weeks during my early treatment for AML. My doctor had me working with the hospital physical therapist to help restore my balance. Chemo, loss of weight, lack of muscle mass and inactivity were the culprits. The exercises helped immensely to regain mobility. I was always physically fit so it was really disconcerting to feel so frail. There were several core building exercises that I was able to do without leaving the bed. Has there been any mention of PT for your husband?

Do you mind sharing a little more information? You mentioned Dale is no longer on the trial drug. Is he on any form of treatment for the MDS now?

REPLY

Very inspiring and helpful information,given
from experience and from the heart xx

REPLY
Please sign in or register to post a reply.