From the very little I know, this is a quite good sign.
Do you know if he has any abnormalities in his chromosomes (normal karyotype?)
Do you know if he has the NPM1 mutated gene?
These two elements can make a difference.

I was in the intermediate category. My doctors decided to go with chemo only, and I am now approaching the 2 year mark of remission.
So there is a lot to be hopeful about. And I would TOTALLY ignore, and if possible not read any statistics. I find them meaningless on a personal level. All they do is make this whole thing much more scary.
I mean, statistically, his chance of having AML is tiny, and he still had it...that's how I started looking at statistics. All that matters is him...

Good luck!!!
Abby

hi Abby,

Keir has normal chromosomes but am not sure about the NPM1 gene. I definitely stopped reading stats a few weeks ago, but it's hard to get the initial ones out of my head. That is going to take an act of will that I am working on; reading the posts on this board is a huge help. Ed, Cliff, all the others are wonderful and I admire, so much, the outlook on not just the illness but on life. Keir got this and I was devastated but it could have been anything - an accident, a worse illness with no treatments - and he has received excellent care and support. I know that there is much to be thankful for and hopeful about. I just need to figure out how to get to "there" from where I am. I need to do this for me, but more importantly, for Keir.

He got a nice surprise today. He was given an at-home video editing job by his employer - he was so thrilled.

I'm glad I was lurking on the site today because my husband had the FLT3 TKD mutation also. Apparently it is common to those with AML m4 and m5. My doc said it is not FLT3 IDT and does not mean a poorer outcome. They do believe it plays some sort of role in prognosis but that role appears to be so small that different studies contradict each other a lot of the time. She said the consensus was as of right now for most people it doesn't mean really anything (prognosis wise). She did say many small studies suggest a better prognosis for those with the FLT3 TKD and NPM1 combined. My husband was normal karyotype with just these 2 mutations. Some of the docs we saw said he was intermediate risk and some said he was in the good risk category (because of the npm1). Since my husband had no sibling matches and he had a good chance with chemo only we went that route and he has been in remission for a year. Hope this helps-good luck with whatever decision you two make!

Vakmon, Thank you for the information. It is so much to take in. I am remembering Cliff's advice about trusting the doctors; I know that is essential and I do have great confidence in Keir's team at Rush. I am so glad your husband is doing well!

We don't know yet if my daughter will be a match (Keir has only one full sibling) but I do remember now the doctor said that waiting until a really good donor was available in any case might be an option (depending on, of course, how he does generally). I am amazed at the science involved. Yet I am also interested in the intangibles. I am currently taking a course on traditional Chinese healing practices and while Keir cannot do any herbal or acupuncture healing, I was thinking that perhaps Qi gong and meditation might be good for all of us - to manage stress, remain positive, and focus on balance and healing. Praying also has helped a great deal; Andrea sent me some wonderful prayers.

There is so much to learn about this, and from so many angles. I keep feeling like I am in a Twilight Zone episode, and my spaceship has crashed onto a new planet. I'm trying to learn what is safe and how to navigate around, and climb out of the potholes as fast as I can.

Lori,

I believe that the association of TKD with FLT3 weakens the impact of the FLT3 mutation. In fact, if my memory serves me, if Keir has the NPM1 mutation (as Abby asked), the combination is actually favorable. At the risk of overstepping my knowledge and saying something incorrect, I would suggest sitting down with Keir's doctor and asking him to explain what receptor tyrosine kinases are, what the various mutations mean, and what his take is on Keir's cytogenetics.

In the meantime, Keir seems to have navigated his first hurdle quite well. That is what is nost important at this point. You know what I think about statistics. I prefer not to know them. However, knowing statistics and getting your doctor's recommendation (which in many ways is dependent on them) are two different things.

Right now. ... let's rejoice about Keir's progress.

Love,

Cliff

I have the FLT3 ITB and NPM-1 (or at least i HAD) and my docs told me that was better than FLT3 or either type alone. However I did relapse so the FLT 3 showed its face, but hopefully with the TDK the relapse rate is much lower with the NPM1.

I do know if I was TKD I wasn't eligible for the Plexxicon trial.

SO glad Keir got better news than just FLT3. That is really encouraging.

Lori, it's good to hear that Keir is doing well. I'm pulling extra hard for him. As for the FLT3-TDK status, I've seen studies where it's actually combined with the usual IDT status because it's so rare. Many times the results don't differentiate because the sample size is so small. That being said, I do also recall that the TDK status is not considered as difficult as the IDT, maybe not a factor at all. I just don't think there have been enough large studies for any doctor to positively give any opinion. And I think that's the answer you're going to get - they're just not sure.

Whatever their recommendation I think you owe it to your son to get a second opinion, maybe several. I got mine at Sloan Kettering and it was simple - based on documents and an exam was not even required. Call them, MD Anderson, Seattle Cancer Care, Duke, Johns Hopkins - all the big boys, and see what they have to say. MSKCC didn't even bill my insurance, although they did ask for my insurance card. Good luck and I'm sure you will choose the right treatment path.

Lou

Lori -- your current oncs will probably favor your getting a second opinion in that it will take the pressure off of them. So, don't be afraid to ask. My feeling is that when you finally get to a point where a decision will have to be made, it will be fairly simple. There really are not that many alternative at this point. So, don't be overly concerned about that -- just learn as much as you can and stay up with what your medical team is providing you with. Take care -- dave

Thank you all for the help in understanding this a bit better. Getting a second opinion was mentioned by Keir's attending in terms of helping us decide on the way forward - I didn't realize, that he didn't need to be physically examined to get one, that is good news. I am beginning to see that long range treatment plans can't be made because they are based on sheer speculation - this is a "one-step-at-a-time" process. For me, this is incredibly stressful but Keir is coping better with it than I am, from what I can tell.

His next bone marrow biopsy is Thursday (seems like so many so fast). I would ask for prayers that this one goes well also - thank you all so much.

Praying for a clean biopsy for Keir!!!!

Julie

I got several second opinions throughout my treatment. Most times I didn't even meet the doctor. And sometimes it was via email (I am in Israel and we consulted with doctors in USA and Europe).
For me, it was mostly to hear that others agree with the course of action taken by my doctors, and I guess also to gain a bit of a (false...) sense of control.

And yes, decisions are often "right now it looks like..."
I went from:
"probably transplant"
"your siblings don't match"
"you don't need transplant"
"remission after induction, good news!"
"wait a minute....maybe you're no longer in remission....which means re-induction and definitely transplant"
"we're not sure if you're in remission"
"we'll assume you're in remission and continue chemo only but searching for donor"
"you will easily find a donor, as you are Jewish of European ancestry. 80% chance of finding 10/10 match"
"oops, your genetics is quite rare. there probably will be no match"
"good news! there's a 9/10 match"
"bad news, the mismatched 10% is critical"
"we found a 10/10 match! BUT she's unavailable for 6 months"
"remission continues, no transplant needed"
and on.....and on....this is just what happened in the first 2 rounds :-)

It's a total roller coaster...
And requires taking it really one day at a time.

Good luck with the biopsy!

Abby,

I absolutely love this post. It demonstrates perfectly how volatile this journey is. I have an opportunity to get a second opinion from the huntsman center but I know they are very pro transplant even with favorable types of aml like 18 21 and inverse 16 so for now I'm opting out.

Thanks for the insight

Julie

Wow, Abby - what a journey! I also used to live in Israel (Korazim and west Jerusalem) and I am of European Jewish ancestry but my husband is English Irish so Keir is quite a mix.

One day at a time. I know others have done it so I can too. (somehow!)

Keir was supposed to have his bone marrow biopsy today but a scheduling issue meant it had to be bumped to Monday, with a follow up appointment a week away. Keir continues to feel well - he's walking about 2-3 miles a day now and eating well. I hope that is a good sign.

I was upset, at first, at the delay, but remembered all your words about the nature of this situation and realized 72 hours would not be critical with this. And I've stopped - completely - reading about this and am in a place of greater comfort with trust in Keir's doctors, as is he. We need to find out a bit more about his genetic situation but that will be explained when we have to start making decisions about the next steps, I know. My challenge is to stop fearing a positive attitude; my natural inclination is to imagine it's "safer" to assume the worst and "prepare" myself (that never works anyway, and creates much unnecessary misery. My question is : what mantras, self-talk, prayers, or techniques do the rest of you use (and I'm very aware most of you have been through FAR FAR more with this illness) to stay positive?

Lori,

On my personal emails now I have a quote from Mark Twain. IT somehow has soothed me through all of my struggles.

---- The reports of my death were greatly exaggerated! -----

Deep breathing and quieting the mind was my solace. Then humor came in a close second.

Ed