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.
I moved this from another thread to help give it more exposure -- please help Neeni45 if you have any thoughts or related experiences ... Thanks -- daveB
Hello all....Ive been lurking here for quite some time now.im 45 yrs old, have a great family, 4 children, and a wonderful supportive husband.
I was diagnosed on October 6th 2014, Was told I have AML, that just evolved from MDS. I do have the FLT3 mutation.
Just some quick info, I wasn't sick nor did i have any symptoms. I had gone to my PCP just to have blood test done because I felt like I was in menopause, I was going to the gym, eating well, but had hot flashes here and there. I just wanted t see if I was in menopause so then I can try to correct the symptoms with hormone replacement therapy.Well
Dr. had me hit the ground running, called me in to discuss high WBC, etc sent me to an Oncologist ASAP, Was admitted immediately into NYU Hospital for induction of 7&3. I handled the chemo itself fairly ok, had one infection flare up on day 7, an existing impacted wisdom tooth became infected caused fever and a lump on side of my face ! But with antibiotics that subsided. My 14th day BMB showed 3% blasts left, so no neupogen. I stayed in hospital five weeks, had another BMB on day 29, was not good, Leukemia came back. So, I was devastated to say the least. Now I had to go back in hospital ( another 3 weeks( for more chemo, but Dr said this one would be different, he gave Clofarabine with cytarabine, said it really worked good in other PT's. Had BMB on day 14 again....those results were once again not good, showed residual disease left, about 10-15% blasts.
I am so confused as to why after 2 treatments I am not in remission. I must get in remission in order to get to transplant. My transplant team has found a donor ( my brother was not a match. )
What im confused about is why would my Dr not try like Rounds, of the same chemo, to try to get me to remission why change it to a different type? Now I'm told I should try a clinical trial at Cornell - ASP2215- its an inhibitor,
Im so scared im not going to get to transplant..... " -- Neeni45
Hello all....Ive been lurking here for quite some time now.im 45 yrs old, have a great family, 4 children, and a wonderful supportive husband.
I was diagnosed on October 6th 2014, Was told I have AML, that just evolved from MDS. I do have the FLT3 mutation.
Just some quick info, I wasn't sick nor did i have any symptoms. I had gone to my PCP just to have blood test done because I felt like I was in menopause, I was going to the gym, eating well, but had hot flashes here and there. I just wanted t see if I was in menopause so then I can try to correct the symptoms with hormone replacement therapy.Well
Dr. had me hit the ground running, called me in to discuss high WBC, etc sent me to an Oncologist ASAP, Was admitted immediately into NYU Hospital for induction of 7&3. I handled the chemo itself fairly ok, had one infection flare up on day 7, an existing impacted wisdom tooth became infected caused fever and a lump on side of my face ! But with antibiotics that subsided. My 14th day BMB showed 3% blasts left, so no neupogen. I stayed in hospital five weeks, had another BMB on day 29, was not good, Leukemia came back. So, I was devastated to say the least. Now I had to go back in hospital ( another 3 weeks( for more chemo, but Dr said this one would be different, he gave Clofarabine with cytarabine, said it really worked good in other PT's. Had BMB on day 14 again....those results were once again not good, showed residual disease left, about 10-15% blasts.
I am so confused as to why after 2 treatments I am not in remission. I must get in remission in order to get to transplant. My transplant team has found a donor ( my brother was not a match. )
What im confused about is why would my Dr not try like Rounds, of the same chemo, to try to get me to remission why change it to a different type? Now I'm told I should try a clinical trial at Cornell - ASP2215- its an inhibitor,
Im so scared im not going to get to transplant..... " -- Neeni45
DaveJ
First and foremost, thank you so very much for the support and thoughts, and prayers. It's been some time since I wrote back but I did read each and everyone's post.
I will start by saying that I began the Clinical Trial of ASP2215 on 12/30/14, I was chosen to take the highest possible dose, 300 Mg.,
I am doing wonderful on it too. I had some side effects like severe leg, hip and arm pains. But that also could be the bone marrow crowding. Pain meds take care of it just fine so no biggie. I did have a weird side effect where azzzZ my skin was terribly painful. It was like a burn all over, I couldn't be touched the slightest bit. But that only lasted like a week or two. This week I received great news from my Dr, she said from what she saw on the blood tests this week, looks like I'm going into remission from this drug! We will do the BMB on Wednesday to confirm. She's so sure though she even alerted my Transplant Team, and they are beginning to prep my Donor ! I'm ecstatic, grateful and humbled that this is happening. I am so ready for The Stem Cell Transplant . Ready to be " Reborn"
If any of you on this forum are on this clinical trial, I will say to you that this drug is a possible miracle drug. I did need some platelets and blood transfusions along the way, but my counts are recovering very Nicely now on their own.
You are in my prayers.
Hugs and prayers.
Karen
Blessings
Julie
Great news. Keep us posted. I agree that this 2215 drug seems to hold great potential. It is giving my brother hope too --- Kudos to all the brave souls who are paving the way to a better future for AML patients with FLT3!
Prayers