Yes, FLT3 mutation is a very bad stuff. AML itself is a nasty disease, but FLT3 mutation causes resistance of leukemic blasts to treatment and makes the relapse much more likely. I do have personal experience with this mutation. My father had it. He had successful induction and three consolidations, but relapsed immediately after the last consolidation ended. Relapse was very aggressive, much more than his initial disease. His WBC went to huge numbers. Nothing could be done. He died in July. He was 68 and lived one year after the diagnosis.
Andrea, I am sorry I can not tell you something more positive. But you asked for personal experience and I answered. Reading your previous posts I see that you are a strong person, a fighter. You are also a health care professional. I don't think sugarcoating the issue is necessary with you. I hope your transplant will happen soon and will be successful. Is there any chance to find well matched donor and to avoid haplo transplant? I wish you the best. Sorry you have to deal with this horror.

Andrea,

No one is going to sugar coat the significance of the FLT3 mutation. It is not a good thing to have. Tashka's father's story is horrendous to read. I am not going to be a Pollyanna here, but I have met 2 people who were FLT3, but of whom got transplants from non-relatives. One is healthy at 5 years and the other is 7.5 years healthy. I have not met anyone who is in the process of going through FLT3. There is nothing you can do but soldier on. We are all praying that you get a 10/10 donor. You must have faith that things will turn your way. I am praying for you.

Cliff

i don't know anyone with flt3 mutation, but i reply to make you know i am praying for you.
wish you all the very best.

Andrea,
Praying and thinking about you. You have been an inspiration to me, you have such courage and wise things to say. Praying for that 10/10 match to walk through the door.
Take Care,
Suzanne

Thanks ll. I knew from the get go this was an additional challenge. I know relapse is going to happen eventually. I know the goal for me is graft vs. leukemic effect.
I spoke to my physician yesterday and we discussed the AC220 inhibitor. We all continue to hope for my match. I will know today what kind of chemo I will be getting. My plan is to fight, fight, fight.
I was just wondering who had information or had heard stories about what may be a suggestion or tries plan.
I guess I don't really know what to expect and I like to be prepared. I will post later and let you all know the results of the most recent biopsy. Until then, enjoy breakfast!
Andrea Bozzi

Andrea - Having the FLT3 mutation isn't great, however I stress everyone is different and reactions to having it can also very. My first induction was difficult, and made it through in normal time. Consolidation was easy and was boring to be honest. Was in remission for over 13 months and then relapse. Second induction was more difficult than first but again did it in normal time. Went on to stem cell transplant which was over 150 days ago and to date no bad GvH reactions.

When I was told of the FLT3 mutant, I was also told I had another factor, uncommon in a 70 year old, which could offset some of the bad effects of the FLT3. What I am getting to is it can be complicated, everyone is a little different, You have FLT3 mutation, fact. It can have bad effects, true. Nothing you can do about it, also true. What is more important is your very positive attitude to survive the battle ahead. So put the knowledge of FLT3 in the back of your mind and keep on fighting. A match will come, God willing, then you can look back on all of this. I believe with my SCT that I don't have FLT3 anymore - gone along with my cancer cells.

Will be praying for you. Keep the faith,

Ollie

Andrea,

I know the FLT3 mutation makes your leukemia very aggressive. I know of 3 people who have had the FLT3. 2 have died and 1 survived. I will also tell you that one of the ones who died, died because of all the damage that was done to her body because of chemo, she was actually blast free. So it is definitely possible to overcome this added complication. It just means that a transplant is needed. So let's all pray for that, a good transplant. Don't look at the odds.

Yesterday I got this random call from a preschool that I had put Maria on the waiting list for before I got sick. They were calling to ask if I wanted a spot. I explained that we had moved because I was diagnosed with cancer. The director of the preschool then told me that she was also diagnosed with cancer a year and a half ago. She had breast cancer , but this is the 7th time she has had cancer, and it has been 7 different types of cancer. Her first cancer, she had a 5% chance of survival and that was 13 years ago. She amazed me with how upbeat and positive she sounded. Then she offered to pray for me, man was I humbled by this amazing person. So just goes to show you numbers mean nothing.

Abby

Andrea,

I completely forgot that Ollie was a FLT3. Look at him now!!! So now I know 3 survivors with FLT3! There are undoubtedly many more who have done well. Of course, I am praying for a great 10/10 to come your way. Never give up. Love to you.

Cliff

Andrea, I have FLT3 mutation. I was diagnosed in Dec2011 and had transplant in Jun2012. I'm 4 months post transplant, my 100 Day BMB showed my bone marrow is 100% donor's. I'm doing better every day - slowly. I was very worried about this FLT3 but I told myself everyone reacts to the treatment differently. The best way (the only way) I know is to stay positive and have faith in your doctors. You are such a strong lady. I am sure you'll beat this disease!

Violet

Ollie and Violet
Thanks. I just started to breathe normally again. I am in a better place. I am heading home today. I will talk to the folks doing the clinical trial at Penn on Monday. It is the AC220 inhibitor.
Cliff, ou always give me hope.
Fingers crossed. God bless.
Andrea Bozzi

Andrea,
I just read an article about AC220. It sounds as an absolute miracle drug for FLT3. Incredible results in animal models at low doses and well tolerated. I am praying for you,. This could be the answer!!!!!

OMG!

Cliff

Cliff, Good news. Can you send the link for the article? If possible.

Violet

Violet and Andrea,

Here is the link to the article. If you have any questions about the jargon in the paper, I can act as "interpreter." I am very excited about the prospect. As you know, Gleevec, a wonder drug for CML emerged from clinical trials. I will still be praying for a donor for Andrea. It took quite a while before they found mine One week, after a reasonably long wait and a nice sojourn (being facetious) in the ICU, they told me that they found a woman who was a 10/10 match with my same blood type O+. A week later, they had found 3 more potential matches and for a somewhat complicated reason having to do with a desired mismatch in KIR receptor, I got the marrow of a German guy, I am now B+ like my wife! LOLOL. One never knows, but the AC220 trial seems more than just a pipe dream. It seems like a truly promising drug. Andrea must be feeling a bit better, especially with the barrage of love we have all sent..

http://bloodjournal.hematologylibrary.org/content/114/14/2984.full.pdf+html

Cliff

Truth be told, I am riding a high right now and I just walked in the Bozzi front door. HOME. I will read the article tonight.
Andrea B

Cliff,

Read the article and AC220 does look promising for countering the negative effects of the FLT3 mutation. I would love to see more human trials and how the AML responds to the inhibitor. Andrea still praying for a match, but in the mean time it looks like this might help.

Abby