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.
Hello everyone. I am new to this group so wanted to introduce myself quickly. My father was diagnosed with AML on May 10th this year. He was NPM1 and FLT3 positive. He has had 2 rounds of induction - the first time, he was in remission for 12 days before relapsing and the second time he was in remission for a little over a month. He was being treated at Sloan Kettering. At the 2nd remission, his cyto showed that while he was NPM1 negative, he was still FLT3 positive.
He has now transferred over to Cornell and has been put on the trial drug Plexxikon. He is currently on Day 17. As of yesterday, the blasts in his blood were 0% - however, we wont know the blasts in the marrow until the end of the trial. Going in to the Plexxikon trial, he had 58% blasts in the bone marrow.
My dad is 63, and in supremely good shape until this. We are all still in a little bit of shock and it seems like so much has happened in the past 4 months. The goal for my dad is to get into remission so that he can have a BMT. Neither of his siblings was a match, and the best unrelated match was a 9/10 so they will be going with cord blood and t-cell depleted stem cells (did I say that right??) when they do the transplant. He will be going back to Sloan Kettering for the transplant.
Its been such a blessing to have stumbled onto this site. With so much negative information on the internet about FLT3, I just didn't want to look online anymore. I am so glad I did and so glad that I found this group. Your stories are insipiring and its comforting to learn from other people's experiences and to share our own.
We are all in this together - we will fight and we will win!
With love,
JVB
He has now transferred over to Cornell and has been put on the trial drug Plexxikon. He is currently on Day 17. As of yesterday, the blasts in his blood were 0% - however, we wont know the blasts in the marrow until the end of the trial. Going in to the Plexxikon trial, he had 58% blasts in the bone marrow.
My dad is 63, and in supremely good shape until this. We are all still in a little bit of shock and it seems like so much has happened in the past 4 months. The goal for my dad is to get into remission so that he can have a BMT. Neither of his siblings was a match, and the best unrelated match was a 9/10 so they will be going with cord blood and t-cell depleted stem cells (did I say that right??) when they do the transplant. He will be going back to Sloan Kettering for the transplant.
Its been such a blessing to have stumbled onto this site. With so much negative information on the internet about FLT3, I just didn't want to look online anymore. I am so glad I did and so glad that I found this group. Your stories are insipiring and its comforting to learn from other people's experiences and to share our own.
We are all in this together - we will fight and we will win!
With love,
JVB
Hugs and prayers,
Holly
Hugs and Prayers!
More than a few of us, myself included, have or had the FLT3 mutation, some also NPM1 positive, some not. The particular inhibitor your dad is on, Plexxicon 3370 is brand new and only a few people worldwide are on it but one of our frequent contributors, Eddie, was on it prior to his transplant with outstanding results. It apparently "turns off" the FLT3 so the leukemia cells do not multiply as fast and also has some chemo properties to kill off blast cells.
FLT3 can be defeated with a transplant. Your dad's bad cells with the FLT3 will be destroyed and replaced with good ones. The good ones will also seek out and eliminate any residual bad cells and blasts that may have escaped.
After the first relapse I'm a little surprised they didn't put him on the trial because relapsing after 12 days is pretty quick. Are you sure that was a relapse or did the first induction simply not quite do the trick?
Whatever it was, he's now in good hands over at Cornell. I suspect Dr. Roboz is one of his doctors - the same doctor Eddie had and the doctor who treated Robin Roberts. You don't get better than that. Good luck and keep us informed.
I too am a FLT3 patient. Diagnosed June 22. I too relapsed. I was re-induced and when I could not achieve a second remission, I was put on the clinical trial of AC220. It was the particular trial going on at The University of Penna. I achieved remission and went to transplant, though my transplant protocol was different than what you mention here for your dad. I am also younger (48 at time) so they opted for radiation, chemo, then transplant. I did not have a related or unrelated match. I have three siblings and one was a half match, so that was my twist. I had what is called a haplo or half match transplant. It amazes me how many options we have available to us.
Post transplant, the FLT3 is still not letting me forget it, so I am on an inhibitor (sorafenib) and currently finishing up my 4th round of Decitabine (chemo). All of this is just until the new marrow sees the mutation as a foreigner in my system and attacks it and any notion it would have of causing me trouble down the road. That's the theory.
I am currently on-hold for the Plexicon trial since my current treatment is working and I am post transplant, so it's a different trial even though it is the same drug. I'll essentially try anything to kick this.
Eddie, who is part of our FLT3 group was on Plexicon and just had his transplant over a month ago. He can share more specifically about that drug, though I am hearing great things.
The Sloane group and Cornell seem to have a fantastic working relationship with each other and your dad is in great hands!!!
Peace and hope always,
Andrea
Are you with DR. Gil Roboz and Yulia? If so YOU ARE IN GREAT HANDS! I love her so much I can not tell you. If you are please tell her Ed Vassallo said she was the best. And I had 55% blasts and was sent to Cornell and put on plexxicon and I am NOW 41 DAYS POST transplant. This is the best personal experience I can possibly tell you. Now the hair does turn white and my beard looked full on SANTA CLAUSE as that is a side effect of Plex, but I had no other side effects and it really did it's job for me. Please please ask me anything and I am confident you will get back across the street to Sloan and have that hopefully life saving transplant. It's what I am certainly counting on. WE WILL FIGHT AND WE WILL WIN INDEED.
Much love and support,
Ed
Louzac - yes, it was a super quick relapse. Everyone, including the doctors at Sloan, were surprised. We considered the trial after the first relapse but given how well he responded to the chemo the first time (relapse aside), the docs at SK thought they would try a reinduction. I think we could have gone the trial route, but stuck with the docs opinion and proceeded with the chemo.
Andrea - you are awesome and a hero. Hang in there - you will surely kick the FLT3.
dppmeeks - Thank You so much! Miracles are wrought by prayer - i truly believe this. Thank you for your prayers!
Ed - YES! Dr. Roboz, Dr. Ritchie and Yulia are my dad's dream team! We are seeing Dr. Roboz on Friday so I will definitely let her know that you say hello. It is GREAT to hear your story. The doctors at Cornell are all so positive and just so fantastic - we are hoping for results like yours so fingers crossed! Regarding the Plexxicon, i have so many questions!! I will compile them and ask them all tomorrow. Get ready to be bombarded. But more importantly, GREAT NEWS on being 41 days post transplant! that is phenomenal and a testament to your strength. Just keep fighting!
And, as I tell my dad daily - we will fight, and we will win!!
With all my love, prayers and hugs to my new extended family,
Jyotsna
Just as an update, my dad is now on Day 20. He had some bloodwork done yesterday - dont know the blasts in the blood yet (the previous test last Monday was 0%) but his WBC is 1.2 (i think neutropenic now), RBC is 10.2 and platelets are 13. He got an platelet infusion yesterday.
He is feeling ok and the best part is he is home. Weird things are happening with his taste. While on chemo, he wasnt able to taste anything sweet (ice cream tasted salty!) and now on Plexxicon, he cannot sense the salt favor. Can only taste sweet. Bizarro!
His hair has not turned white (unlike Eddie) but he is feeling pretty tired and taking it slow. His liver numbers are going up a little bit (they spike up a lot after chemo #2) but not too bad.
Eddie - did you have any changes to your taste/appetite on Plexxicon? Also, on what day of the pills did they do you BMB? And how long after that did it take to get to transplant?
I will continue to keep you all posted.
xo, JVB
I am so happy that you are now posting on this site. There are many FLT3 survivors here and the tyrosine kinase inhibitors (and there are several) promise to turn the whole FLT3 issue on its head. Eddie, Jay, and Andrea are doing very well.
I was not FLT3 when I was diagnosed with AML at age 58, but I, like your dad was floored by my diagnosis. Tomorrow will be the second anniversary of my chemo, TBI, and transplant and I am doing very well.
Even without the FLT3 inhibitors, my taste for food suffered greatly from my treatment. It took about 6 months to regain an enjoyment of food, but, as promised by others before me, it came back completey as it will for your dad.