Acute Myelogenous Leukemia (AML) Support Group

Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.

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CajunGirl2015 03/10/2015

I was looking at my sister's reports from her last BMB on 2/18, they did an extra test for the FLT3 mutation which they have never done before except after the initial BMB upon dx. They didn't tell her why they did it this time and not any of the others. She is going to ask them at her next appt. sched for 4/3 but I'm wondering what would make them do this when they haven't all the other times. From what I could tell it was neg., thank goodness, but I still worry as to why all of sudden they would be checking this. Is this something they do routinely every so often or do they see something they are beginning to worry about.

Those of you with a positive FLT3, did you start out with this positive or can it develop later? I did look at the one they did at her initial dx, and it did say positive for FLT3 but less than 10% wild type (of course I have no idea what that means) but they have never told her she was FLT3 positive. They only gave her a dx of Inv. 16. Does it have to be a certain percentage before you are considered positive for this mutation?

I guess too much information is a bad thing :(

Debbie

Noodle65 04/21/2015

Debbie,

Having just returned from my first cruise since completing chemo in Nov of 2013, here is what I learned. If a medical emergency occurs Jo must have a passport. If she is traveling on a birth certificate only she cannot be medevac'd. Also, I highly recommend she buys trip insurance. I have traveled to Belize and it is VERY Third world. I personally would not get a blood transfusion there. Cruise ships are extremely filthy. I was very tentative about going even at my current stage. I personally would not go but that is my perspective. Jo is so blessed to have a sister like you to love and support her.

Julie

LoraBerg 04/21/2015

Is the doc ok with the cruise? A cruise is prob the last type of vacation I would take if she is AT ALL immuno-suppressed. I would for sure get the doc' s blessing on that first. Just my opinion.

amesch1 04/22/2015

Living your life is good, but at the same time you need to operate within your comfort zone and realistic physical capabilities. If your body is ready for the next treatment, count wise, I wouldn't necessarily delay it. One thing, you make your overall treatment a longer duration and if you are already taking significant gaps between treatments, I wouldn't add even more to it. However, I have heard of people getting tattoos during treatments so nothing is out of the question as to what you can do. After all, it is still our bodies, we aren't physically bound to any one thing. During treatments, I didn't go anywhere far from my hospital for more than a weekend, and usually it was right after transfusions to make sure my counts would be sufficient to get me through till Monday. Knowing how frustrated I was with the chemo process interrupting my way of life, I can understand wanting to get away from the daily drag of the process. All I would say is evaluate and use caution.

Noodle65 04/30/2015

Debbie,

I've been wondering how Jo's Dr visit went and get questions about her flt3 status. She is so blessed to have you as a sister.

Julie

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