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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Noodle65 04/03/2017

4 years ago AML tried to steal my life, my faith and my joy. Today I am happy to report the demon AML failed miserably. Although this support group is not as active as it once was, and that makes me sad, this group has been by my side virtually through many ups and downs. I will be forever grateful.

For anyone newly did who may be reading this I want to give you hope. AML is not a death sentence, there is life after. For me, life more abundant. I give almighty God all the glory for my cure and restored health. I've had 4 additional years with the love of my life and my amazing daughters now 12,14 and 16. I choose to count only the positives gained from AML such as a much deeper trust and love for my GOD, closer relationships and purpose. AML provided a purpose for me, to love, pray for and encourage those fighting this heinous cancer.

Blessings

Julie

Blessings

Julie

leapea1208 04/03/2017

Julie

I'm so happy you are celebrating this monumental milestone in Maui! Your family deserves it
As alwaysbprsyers for continued health your ability to help so many is so admirable
Tony's getting labs today (first time in 6 weeks) I'm a wreck of course, he continues to receive Aza as maintenance and takes an oral chemo called Sprycell daily. I ask the lord to continue to heal him and to keep our family whole, allow him to raise his children. He is the most amazing daddy and Izzy's whole world
Our son Anthony lights up so much when he sees his daddy, my only prayer/wish/hope is for our children to keep their dad
(sorry to high jack your post, he's arriving at UC shortly and I'm on pins and needles, labs take forever)
I'm so happy for you Julie
Amen

vakmom 04/03/2017

Congrats Julie!!! Here is to many many more years!!!!!!

:) julie

Noodle65 04/03/2017

Lea,

Never apologize. You have been my rock of sanity, calm and boundless AML knowledge at all hours. You are amazing. Tiny and I stared our journeys close to the same time with simular dx but Tony certainly has had a very tough fight. You two are an inspiration to all who hear your story.

I believe Tony will walk Izzy down the Isle and bounce grandkids on his knees. Your family is always in my prayers. Please give us an update on those labs

XOXO
Julie

Noodle65 04/03/2017

Thanks so much, Julie.

worriedmom2014 04/03/2017

Congrats Julie, heres to many more years.

Hugs
Karen

Bou123 04/04/2017

I too find strenght and hope in all your posts, best to you and your family

louzac 04/08/2017

What great news, I'm so happy for my good friend. I wish for the same results for all those suffering with this disease. I too have been fortunate in my fight but nobody has been more helpful to me and others than you. Your emotional and spiritual support to patients and caregivers has been beyond outstanding. You're the best, Julie.

Lou

Noodle65 04/09/2017

Love love love you, skinny fly paper Lou!!!

rufus210 04/15/2017

Hello Noodle65, What was your cytogenetic profile, did you have chemo, or chemo and transplant? hope you don't mind my asking for details. thank you.

Yoda 04/15/2017

Thanks so much for sharing. You give hope to those just starting down this path.

rufus210 04/15/2017

Hi again, I posted above asking about cytogenetics. My main reason for asking is that I am wondering about little bumps along the road. My husband is in remission after AML, with a favorable outlook, but his platelets are showing a moderate downward drift, even though all the other measurements are normal. Did anything like that ever happen to you? Thanks so much.

Noodle65 04/15/2017

Greeting Rufus,

Welcome to the club no one wants to belong to. I am so sorry to hear about your husbands Dx.

You have brought up one of my favorite topics. Stinking platelets. I have a love/ hate relationship with mine.

Like your husband, I had a favorable subtype, inversion 16 with negative flt3 and ck it. What subtype did your husband have?

I will provide a link to a very long post dedicated to my four year platelet odyssey and I'll provide it.

My big take away is don't stress about platelet fluctuations. They are the most fickle cells out there. If your hubby is inversion 16 or 18:21 translocation, he should be getting PCR tests for much earlier detection than any CBC. I still get one every 90 days.

Where is hubby treated?

Blessings
Julie

Noodle65 04/15/2017

My platelet odyssey

https://www.dailystrength.org/group/acute-myelogenous-leukemia-aml/discussion/praising-god-for-platelets-and-everything-else

rufus210 04/16/2017

The subtype/molecular classification is CEBPA-DM (double mutation). No other significant mutation was found, which is good. His treatment was and now follow up care is at Memorial Sloan Kettering.

Noodle65 04/16/2017

Is he getting any molecular testing like PCR or FISH?

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