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 know it stinks. I know this is my demon. Has anyone else dealt with a FLT3 mutation with AML?
Andrea Bozzi
Andrea Bozzi
-
My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
As so many others have posted, we support you, pray for you, and keep you in our thoughts and hearts. You are a fighter and you have a very good attitude in the face of adversity...two major survival strengths.
Therese
Of course I agree with you. No one wants to be one of the early human subjects in a trial, but the drug appears to be effective at very low doses and it does not sound toxic. I m dreaming of a 10/10 for Andrea, but this does seem like a promising alternative.
Cliff
Violet
I think the prospects for this drug are exciting. Who would ever have thought that high dose Vitamin A could potentially cure promyelocytic leukemia (the type I wish we all had)? Or Gleevec for the treatment of CML? At least there is something good on the horizon for Andrea at this time.
Cliff
What I like about what I have read is that the compound appears to have a major inhibitory effect on FLT3 without undue toxicity. Who would ever have thought that high dose Vitamin A could potentially cure promyelocytic leukemia (the kind I wish we all had)? These clinical trials are the reason that people are still living.
The AC220 is in Phase 3. The only data still not fully resolved is the dosing, which was discussed in great detail. I had another biopsy ( that's three in 14 days) and lots of other tests. I am exhausted from information. We also discussed an I habit or that I would continue post transplant. We discussed the urgency of a transplant, even if it is the haplo.
Even with AC 220, I am told the FLT3 can eventually become resistive to this as well, particularly with my fast relapse. Mentally, I try to keep this in check. Personally, as a person of medicine, I want to be the ONE! I want them to say in an article "a 48 y/o female in otherwise great Heath, etc, etc, etc.". I am so happy that I have different top docs, at different institutions reaching across to cure me. Many of these folks bring their expertise and friendships with other colleagues at John Hopkins and Sloan Kettering all with a common GOAL - to help cure US! I feel blessed that they are coming into my life. I have hope.
My son came in from HIgh School today and asked my husband for an update. His worry......will mom be able to stay home? When my husband said that is the goal, except for transplant he fist pumped and said "YES" . My heart is warmed. A tear or two leaked from the corner of my eye. I want to be here for him, my daughter and my husband. I adore them!
Onward and upward. Peace, love and hope,
ANDREA BOZZI
The AC220 is in Phase 3. The only data still not fully resolved is the dosing, which was discussed in great detail. I had another biopsy ( that's three in 14 days) and lots of other tests. I am exhausted from information. We also discussed an I habit or that I would continue post transplant. We discussed the urgency of a transplant, even if it is the haplo.
Even with AC 220, I am told the FLT3 can eventually become resistive to this as well, particularly with my fast relapse. Mentally, I try to keep this in check. Personally, as a person of medicine, I want to be the ONE! I want them to say in an article "a 48 y/o female in otherwise great Heath, etc, etc, etc.". I am so happy that I have different top docs, at different institutions reaching across to cure me. Many of these folks bring their expertise and friendships with other colleagues at John Hopkins and Sloan Kettering all with a common GOAL - to help cure US! I feel blessed that they are coming into my life. I have hope.
My son came in from HIgh School today and asked my husband for an update. His worry......will mom be able to stay home? When my husband said that is the goal, except for transplant he fist pumped and said "YES" . My heart is warmed. A tear or two leaked from the corner of my eye. I want to be here for him, my daughter and my husband. I adore them!
Onward and upward. Peace, love and hope,
ANDREA BOZZI
I am sure your head must be spinning. Remember that Ollie was a FLT3 and he is thriving. Did you discuss being in the trial to control things until a suitable donor comes along? I pray that one does, because that will clarify your direction. I feel for you to the bottom of my toes and am blown away by your resolve.
Cliff
Yes, Dr. Perl said at the moment a donor comes along, the trial ends and we go for it since transplant is the cure. He wants me at 0 blasts though and I am at 8% today.apparently, even if someone is identified today, I hae time to get this drug to work. I can also be on it for a bit ( he says a few months) before the mutation catches on, though they would just adjust dosing and monitor the heart for any issues.
He also suggested that because I have another unusual "something", I may need to go haplo , and he also recommended we get me to 0 blasts first with this trial.
I am very excited about this drug. Their only concern is how quickly I relapsed shows that this kinase protein whatchamacallit is so darn aggressive and will make itself resistive to these drugs, at least in his experience with FLT3.
I remind myself daly about our FLT3 survivors. I just got notice today that another prospect did not work out, but two more samples are at the Red Cross and another is being taken on Oct 25. God will dictate the person and time, I am sure. My job, to keep going and increase awareness. I also want a delicious, juicy Philly cheesesteak dripping with fats and cheese or a cheesy garlicky pizza or my favorite hoagie and Chinese food! I need to be well to enjoy these foods I have come to call lunch!
Thanks for our support. Once I get more info on the AC 220, and read all of the info I now have, I will start a thread specific to this trial and how it affects me. I may be the only person in the group with this opportunity and I want everyone to know the good, bad and indifferent with it as I go through the process. This could be great news for all of us. He mentioned so many other inhibitors for multiple AML treatments. Quite fascinating these researchers. This man is special, great bed side manner and I felt his sincerity.
Andrea B.
What I am hoping is that the AC200 makes you stronger and healthier as you wait for a transplant. There has to be someone in this world who matches you, although your spirit, as they say in French, is "nonpareil" (unequalled). If anyone deserves a donor, it is you. When I go to Memorial Sloan Kettering this Friday, I will ask about you and about AC220. Now I am not just going for a shot. I am going to learn everything I can about FLT3 and what is out there. You are not in this alone. We have your back (to quote an incredibly overused recent addition to the vernacular).
Cliff
There are so many things about you that are inspiring. Your seemingly unflagging energy, your kick butt attitude, your intellect and abilty to sift through complicated medical information, your continual spirit of hope and optimism, and your loving personality. I figure that is a pretty impressive list when I've never even met you, but all those qualities leap off the screen when you post. These strengths are the same ones that are going to see you through this. Some people melt in a crisis and some stand up, take charge, and fight. Clearly, you are in the latter group.
As always, you are in my thoughts so many times each day.
Therese
So glad that you had a positive appointment with the doctor. And that you have a plan of action. I always felt better when I knew what the plan entailed. Prayers sent your way as you start this new treatment.
Abby
So, again thanks for the props. It makes me happy if I can offer hope to anyone.
Abby, I love a plan. Even though I know there can be twists and turns. The twists and turns are expected actually, but as I keep reminding myself, although a donor has not yet been uncovered, doors continue to open for me. I am lucky. It will happen, in God's time, not mine.
Peace,
Andrea B.
In His Grip - Sami
Wow! And yeah! Thank ou for adding to this post. My last round of chemo got me down to 8% blasts and they are hoping the count Is high enough for me to get started in the program by Monday, otherwise I just need to wait a couple of weeks. I relapsed quickly after induction.
Have you not had a transplant? Are you still waiting? I am trying to read between the lines, how long have you been on AC220? 2 weeks? When you say blood counts are low, is it worse than chemo? I routinely would get whole blood and platelets at least twice per week and then as my counts recovered, I need it less. What hospital are you treating with? I do not know what MDA stands for.
You have no idea how happy I am that you popped on here. I would love to go through this process with this drug with someone that I could share info. I am a 48 y/o female.
GOD Bless YOU!
Peace, love & hope for us all,
Andrea Bozzi