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.
All,
This amazing group of people have helped me in so many ways, I want the opportunity to give back by sharing my personal experiences in hopes that they will help others, as well.
As I have posted previously, I had my "End of Treatment" consultation on Jan 23rd-exactly 10 months after getting my Hickman and starting Induction chemo. My journey of Induction (26 days in the hospital) and four sessions of Consolidation took twice as long as expected due to slow platelet recovery but God's timing is always perfect.
During the consult, the plan was to discuss the results of my final BMB done a week earlier. My med team warned me in advance that the PCR test is very sensitive and that I could have a false positive. Fortunately, early on during my treatment, my med team put me in touch with a patient who had traveled the chemo only path (she had T18:21 while I had Inversion 16). She is now two years in remission but did have a false positive PCR for over one year before it cleared.
Sure enough, although my BMB was completely clean with no signs of leukemia, my PCR showed positive for Inversion 16. My med team stated they were not concerned and I had my Hickman removed (oh happy day). The PCR test results got more interesting as it tested positive for Inversion 16 sub type "D" and my initial diagnosis was for sub type "E".
This was the first I'd heard that there was a sub type within the sub type-my head was spinning but because I was prepared for the news I waited for the rest of the story. They explained that they would send a second sample to be tested at the original lab that diagnosed my AML. They basically gave no credence to the first test due to the D vice E type determination and said not to worry.
Having a PHD in worry this was a challenge; however, God gave me the peace that passes ALL understanding. I honestly did not dwell on it. I also avoided posting here to allow our combined mourning for our precious Andrea. My issue is so trivial in light of losing such an amazing warrior.
But after some one on one encouragement from members of this group, I've decided to share the "Happy Ending" to my story. This Tuesday I was notified that ALL tests came back negative-no signs of leukemia and absolutely no cytogenic sign of Inversion 16!!!! Praise Almighty God-He healed me!!!
Now, I have monthly CBCs (how bizarre it is to not go there weekly as I have from the beginning) and a clinic visit every three months. My platelets are still low-around the 70s but I know it is not linked to leukemia.
I am so grateful for ALL of you and the wisdom, compassion and encouragement you share day in and day out.
God Bless you all!!
Julie
This amazing group of people have helped me in so many ways, I want the opportunity to give back by sharing my personal experiences in hopes that they will help others, as well.
As I have posted previously, I had my "End of Treatment" consultation on Jan 23rd-exactly 10 months after getting my Hickman and starting Induction chemo. My journey of Induction (26 days in the hospital) and four sessions of Consolidation took twice as long as expected due to slow platelet recovery but God's timing is always perfect.
During the consult, the plan was to discuss the results of my final BMB done a week earlier. My med team warned me in advance that the PCR test is very sensitive and that I could have a false positive. Fortunately, early on during my treatment, my med team put me in touch with a patient who had traveled the chemo only path (she had T18:21 while I had Inversion 16). She is now two years in remission but did have a false positive PCR for over one year before it cleared.
Sure enough, although my BMB was completely clean with no signs of leukemia, my PCR showed positive for Inversion 16. My med team stated they were not concerned and I had my Hickman removed (oh happy day). The PCR test results got more interesting as it tested positive for Inversion 16 sub type "D" and my initial diagnosis was for sub type "E".
This was the first I'd heard that there was a sub type within the sub type-my head was spinning but because I was prepared for the news I waited for the rest of the story. They explained that they would send a second sample to be tested at the original lab that diagnosed my AML. They basically gave no credence to the first test due to the D vice E type determination and said not to worry.
Having a PHD in worry this was a challenge; however, God gave me the peace that passes ALL understanding. I honestly did not dwell on it. I also avoided posting here to allow our combined mourning for our precious Andrea. My issue is so trivial in light of losing such an amazing warrior.
But after some one on one encouragement from members of this group, I've decided to share the "Happy Ending" to my story. This Tuesday I was notified that ALL tests came back negative-no signs of leukemia and absolutely no cytogenic sign of Inversion 16!!!! Praise Almighty God-He healed me!!!
Now, I have monthly CBCs (how bizarre it is to not go there weekly as I have from the beginning) and a clinic visit every three months. My platelets are still low-around the 70s but I know it is not linked to leukemia.
I am so grateful for ALL of you and the wisdom, compassion and encouragement you share day in and day out.
God Bless you all!!
Julie
Dids
We are the low platelet twins :-) But we are in remission by the grace of God, so we are grateful! I am so happy to hear you are continuing to thrive.
Lori,
I wait everyday to hear an update about Keir and faithfully you keep us updated. You are such an awesome Mother. We are all praying for Keir to beat this demon AML. Thank you so much for your encouragement!
Blessings,
Julie
xxx
Monique and Sal
Julie
Congratulations! I am so happy for you, thank you for sharing the great news. God is good!
Take Care,
Suzanne
Suzanne, you are always here to inspire and cheer me on. Bless you for that!
Julie