Welcome momma,

I'm so sorry to read this about your son. We often say here, it seems harder for the care giver than the patient. That must be especially true as a parent.

I am no expert on flt 3 nor sct; however, I am 28 months post dx and living a normal life, praise almighty God. I can tell you that no two scenerio is the same. I know two warriors who had fly 3 aml and Philadelphia chromosome ALL who are post sct and doing great.

I will give you the best advice I recieved from this group. Please please stay off the Internet regarding Aml. The median age at dx is 70 so at 48 the stats on aml were irrelevant to me. For your 18 year old son they are even more meaningless.

Trust your med team and follow all their recommendations, ask questing of this amazing group (we have many flt 3 survivors), protect your son germs, make sure he drinks, eats and walks whenever possible.

And finally and most important, pray and ask for prayer. I felt and continue to feel the cover of prayer and the peace that comes only from God. I am so grateful.

I would love to know your son's name so that my family can pray for him. When my 10 year old daughter saw me posting she wanted to know who needed her prayers.

Rather than focusing on how unique the dx is please rest in the knowledge that sct is the cure for aml. He had so many advantages, his young age being the primary one. Please stay with us and let us help.

Blessings
Julie

Thank you for the welcome Julie. I appreciate it. I can't not research it. ;) But I do know enough to read from reputable websites such as bloodjournal.org, lls.org etc. I would go nuts without educating myself. I need to understand what his docs are talking about. I am not content to just accept what they say. My son has been a real trooper and has maintained a great attitude so far. :) His name is JT Larsen. We certainly appreciate the prayers!

We will be praying for JT!!! Do you have a donor identified?

Hello Momma

I am sorry to read that your son has AML. My son was diagnosed March 24, 2014 with MDS/AML and he was only 33 years old at the time. Because of the MDS his only hope for a cure was a SCT and he had one on August 28, 2014. We are approaching his 11th month post SCT and he is feeling great and just started a Ped Psych Fellowship at the hospitsl where he did his psych residency (he is 3 years out of Medical school). I know what you mean about needing to learn as much as you can, I read as much as I could on here going back through the posts for several years and honestly learned more than on any other site. Real life experiences were better for me than reading studies.

I hope you keep up updated on how JT is doing, feel free to ask questions as there is alot of experience here and several SCT survivors and at least half of those were FLT3 positive I think.

Hugs and prayers.

Karen

We do not have a confirmed donor yet. Unfortunately JT has no full siblings. So they said we'd have better luck looking at unrelated donors. There are 3 possible matches in the database and the transplant hospital was supposed to make contact and start the process for further testing. I haven't heard anything beyond that. I know their original target date for transplant is in October.

Welcome Momma,

My brother is 56 and just had a second transplant. He is FLT3 positive. The first donor was my 60 year old sister. His second donor was a 22 year old international male, id unknown. He is doing much better on this round so don't be afraid to take that stranger up on his or her offer --- the younger the better I think. On the FLT3, the trial my brother is on has a number 2215 --- it may have a name by now but I don't know it. This drug has provided hope for us so wanted you to know about it. This time my brother can go back on the drug whereas last year he had to come off the trial after transplant. We are hoping the stronger marrow and the drug will do the trick this time. Right now, the doctors are ecstatic about his blood numbers. He is tired and has a long way to do but finally after 18 months, we see reason to hope-- and thank God for hearing the millions of prayers that have come our way --- many from the people on this site.
Stay with us ---- as others have said, this is a great resource and light amidst the darkness and fear.
Twilight

btw --- where is your son being treated? We are at U of Pennsylvania and I cant say enough good stuff about his team

AML Momma,

Sorry you have to be here and your sons diagnosis. His youth is going to help him put this disease behind him and on to a healthy long life. From the short time i have been on this board, there has been lot of progress toward the complete cure. I believe that they are on the verge of being able to put leukemia into the ranks of polio and other such disease's that are merely distant memories to us.

I had the Flt3 mutation and have survived. My 2 year from dx "anniversary" is a few days away. And i am an old man compared to your son.

As Julie said the power of prayer is the most powerful tool you have at your disposal. Leave the rest to the doctors. Get everyone you know praying for your son. I attribute my survival directly to the prayers that i received from so many people, many unknown to me. And you have to put lots of trust into your medical team, i did exactly what they told me to do, when they told me to do it.

I'll be praying for your family and your sons cure. No parent should have to go through this. Praying that one day soon, no child will have to go through this either.

DaveJ

I also have an 18 year old son that just graduated momma, so your post really hits home for me. Please take care of yourself as best you can.

DaveJ

Brtwilight, we are in Tulsa Ok. He is got his initial treatment at Saint Francis. He will be transferred to the Stephenson Cancer Center @ OU Medical Center in OKC for his transplant.

Glad to see you on here AML momma! I'm the one who sent you over to this site :) I completely found your post on a fluke google search (I like to periodically search for the latest news on aml with flt3-tkd and npm1 mutatrions). Your post was the first thing that popped up in the search. I hope you can find some answers and support here :) My husband was chemo only, but as you can see many on here have had a transplant. He was diagnosed 3 years ago (in 2 weeks), and has remained in remission since his last round of chemo (2 years 7 months).

:) Julie

Thanks Julie. I had never heard of this site despite my constant searching for forums. I hope to one day connect with another dual FLT3 patient or caregiver. It is like a needle in a haystack!

Welcome mamma,
I'm sorry you had to be part of such a group but the support here is wonderful. I don't carry the dual flt however I am or was FLT 3 ITD and MPN1 mutated, WBC 77000 and 90% blasts.

The only statistic you need to worry about is your son. Each and every persons journey through this horrible disease is completely unique. You can meet people with the identical genetic mutations and identical treatments but their journeys will be completely different. Our bodies are both strange and wonderful. I learned very quickly not to depend on stats rather be helped through by the people on this site. My docs statistics didn't give me a great chance at diagnosis. Yet on 13th of August I will be 3 years post transplant.

Take each day as it comes, some will be ok some will be hard but he will get through it with you by his side. Try to keep him eating well and exercising to prepare his body for transplant.

I'll will pray for a good strong match for him.
Majella

Momma,

Just make sure you get the best care available. It can make a hUge difference. I think the leukemia society helps. I say this because i saw the post about insurance on another site.

Prayers and best wishes,
Twilight

Hello Momma. Sorry you had to seek us out but this site is full of compassion, information and support from our team of warriors.

I'm another of the FLT3ers along with Majella and the others. Sunday will be exactly 3 years since my diagnosis and I am 31 months post transplant. I had a very difficult induction which took two tries. After one round of consolidation chemo I had reduced intensity conditioning and a stem cell transplant from my sister. It was a very difficult road but I have been back to work over two years and feel pretty well.

I was 52 when I had my transplant. Your son is considerably younger and stronger, a big advantage. And even in the three short years since my transplant there have been many advances in FLT3 inhibitors, graft vs host treatment, induction and conditioning protocols and many other areas of AML treatment.

FLT3 ITD is the kind that needs special care and the kind that the inhibitors are designed to counteract. FLT3 TKD has not been shown to be a negative mutation. NPM1 is a positive mutation but it's unclear whether it counteracts the FLT3 ITD. So it's FLT3 ITD that you need to beat down. And they will. They have many tools at their disposal and new things are being developed every day.

And finally, remember that this disease is beatable with current therapies. A transplant is meant as a curative procedure and that should be the goal. If there is any doubt in your mind about the course of treatment they are recommending, get yourself a second opinion from MD Anderson, Sloan Kettering, Seattle Cancer Care, Dana Farber or one of the other leaders in AML treatment. They can do it just by looking at charts and reports, no exam needed. In fact, you might want to get one anyway. It can't hurt.

Good luck and stay with us and let us know how things are going. We're all pulling for you and your son.

Lou