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
You will find a wealth of knowledge here as well as an amazing amount of support
I'm unfamiliar with the second chemo your doctor had you do for induction and my husband does not have the FLTthree mutation either but there are a bunch of people on this blog that do have it and are going to be able to help you
I have found that asking the doctors very straightforward questions has served us well as I do find that they only tell you as much as they think you need to know for the moment sometimes. I would ask him directly about the chemo recommendation if you're still having questions however it seems to be behind you and moving forward they have a new plan and perhaps a new hospital if I'm not mistaken by reading your post?
Great news on having a donor already lined up my husband had an unrelated matched donor as well his three siblings were not matches
Keep us posted start a thread of your own if you want and we will all help you best we can
Lea
Welcome, although I am sorry you are here. I hold my breath in hopes that no one has to experience this disease. I am going to guess that your doctor changed the kind of chemo because it was your best chance, in his opinion, of getting into remission. Since you relapsed quickly, he likely wanted something that he felt would be more effective. You have several factors playing in your favor - you are young and strong and there are great trials for those with flt3. Has you doctor mentioned AC220 at all? I've heard people refer to it as liquid gold because of how effective it is for those with flt3. I've also heard wonderful things about ASP2215. You are at a great hospital and in capable hands. Wishing you all the best and look forward to you getting your transplant and restored good health. You'll get there!
My Dr's answer to me was that " why go back and use something twice when it didn't work the fist time" I suppose it was a hard answer for me to digest, lol
I would love to read and hear about some of you all on here who have the FLT3 and what brought you to remission? Has anyone tried or is trying ASP2215 ?
Besides the trial drugs there are also a few which have been around a while, sorafenib being the most common. And AC220 had been around a while although still on trial. Not sure what's taking so long to get it approved.
I don't know why some people have trouble getting to remission and some don't. But I do know that you're in New York with the highest concentration of medical talent in the world. I think it's time to solicit advice from some of that talent. Good luck.
Lou
I am sorry that I just found out about you from Dave Brown. You will find him to be one of the most spiritually generous human beings in the entire universe.
I am now 3 years and 3.5 months post transplant. Like you, my diagnosis was a complete surprise. I was working out 3 days before I had a routine blood test as part of a physical. The rest of the story was very much like yours. Unlike you, I was not FLT3, but like you, I failed my first induction. I did pass induction the second time and was able to go on to transplant.
I have learned that everyone with AML acts a bit differently You are in good hands. I was treated across the street at Memorial Sloan Kettering, where I think Lou was treated as well. These tyrosine kinase inhibitors show great promise, and should get you into the position to get a transplant. I will be praying for you every day and am here to answer any questions you might have that I can.
Cliff
My brother was diagnosed in 12/13 transplant in 4/14 after battling pneumonia relapsed in 7/14 and now admitted with more than 80% blasts. I have been trying to get him on the asp 2215 study since 7/14 but UCLA hasn't opened up. Now that the study opened he's not doing well. He was just admitted back two days ago fighting a skin abscess with fevers and extreme fatigue, nausea, pain. Looking back I would have had him go on the asp 2215 instead of a transplant. I was 100% match for my brother and he also had a DLI in 9/14. He's only 40 years old with two kids ages 2&3. Everyone responds so differently with AML. At this point I am praying so hard that he can recover from this infection. There's a chance his cells can't fight this off. I think his only remote chance of survival will be to be healthy enough to get on asp 2215. UCSF has had good results. I've talked to the investigators up there when I had thought about sending him up north. Hope this info helps you decide
Prayers your bro can get on 2215. I have good vibes about this option based on my bros experience with it. I think it is my brothers best option. Docs are hoping it will buy him time to allow his immune system to strengthen and fight off the disease. As they explained, the leukemia is growing faster than his new immune system and hopefully 2215 will level the playing field. One week his wbc was 7000, then four days later, it was 30000. After a few days on a pill form of chemo and 2215, it was 1000. While too low, surely the pill was doing something. Now we pray the docs can adjust it all so we get a real chance to beat this.
I will offer Christmas prayers for all AML sufferers, but especially those with this added flt3 factor.
DaveJ.
Where was your treatment?
Out sure seems like there are a ton of us dxd in our forties, I was 48. I also have the daughters to raise. You sure seem like a fighter and live where the best of the best is available. I will pray for remission and sct.
Blessings
Julie
Diagnosed first with AML (they thought it may have started from MDS, we don't know for sure) on 8/2011. Was flt3 negative and had chemo 4 rounds. Was in remission until 6/2014
When I relapsed, I had the exact same characterstics as my original AML, so I'm flt3 negative. Got a transplant on September 3rd (9/10 match unrelated donor), so far doing well.
I was lucky to get in remission both times. However, I may have a bit of insight. In 2011 after my 7+3 there was a moment they thought I might not be in remission. They told me then that if I'm not in remission, their protocol is NOT to repeat the 7+3 (much like your Dr) but to do another combo "Salvage" chemo.
Luckily, I didn't need it. (they debated about the % of blasts, some saw 5%, some saw 10% - the difference between remission and no remission is small....)
When I relapsed, they debated what chemo to give me to get me into remission. I believe that they would usually not repeat the 7+3 but would go to the Salvage combo. However, in 2011 I had a very violent lung infection they think might be caused by the Cytarabine, so they wanted to balance toxicity and how much my body can handle together with chances of remission. Also, since almost 3 years have gone by since my original 7+3, they somehow factored it in, that after so much time, 7+3 may be effective again.
So I got 7+3 again and it got me in remission again.
Lots of luck and health!!!
Abby