I'm a recent inversion 16. Diagnosed back on February 18th after being sick for two months. After induction, I went into remission and have been like that since. I have my fourth out of seven chemo runs coming up in about a week. It's always good to find someone that is similar to you.

Welcome Amesch!

I also had INV 16. I am curious about your treatment protocol. I have never heard of seven chemo sessions. Can you tell us more about your treatment plan and where you are treated?

Blessings,

Julie

There are several INV 16 members here:

Sgotee
Me Noodle65
Tony-Leapea's husband
Jo-Debbie (Cajungirls's) sister

We are ALL here to help. You will not find a better online support group.

Julie

Amesch,

Having AML with your cytogenetics is like a breath of fresh air compared to the rest of us. You should do great and I am thrilled that you have done so well. That will continue.

I was not as fortunate and needed a transplant. Nevertheless, I am thriving at 32 months and counting. I am glad that you joined our motley crew, because you can be of help to others. It is always nice to see someone with great cytogenetics and a great outcome. Enjoy the long weekend as a HEALTHY person.

Cliff

Thanks for the support everyone! This journey was a tough one to begin being I lost my mom to breast cancer when I was 16. But, through God and an awesome support base I am taking this challenge head on.

I am being treated at MDA in Houston, TX. I was originally on the FIA protocol for my induction. FIA involved me getting Fludarabine, Cytarabine and Idarubicin on days 1-3 and then just Fludarabine and Cytarabine on days 4-5. After that round, my blasts were reduced from 65% to 1%. I was then switched to the FLAG-IDA protocol. The way they are doing my protocol is I will get Fludarabine and Cytarabine on my first five consolidation treatments and then add Idarubicin to the last treatment. I also get a neupogen shot on Day -1 and each day of chemo followed by a neulasta shot on Day 5 of consolidation. My consolidation treatments take place over three days.

Amesch,

You are in a great place, both with how you are doing and where you are being treated. Things should go well for you. All hospitals have their own regimens, but yours sounds very tolerable. Keep up the good work!

CLiff

CajunGirl's (Debbie's) sister Jo is being treated at MDA as well with the same protocol I think. You two may have met and not know it.

It is a small AML world

Julie

For those complete with treatments, where all of your mutations gone by the time you stopped treatments? I just finished my fifth round (4th consolidation) and am scheduled for two more consolidations, but I'm weighing my options in seeing if those two more rounds would be more harmful than beneficial. I'm in molecular remission and have no present mutations based on my last bone marrow test at the end of June.

Amesch,

I had Inversion 16 with a negative CKIT and FLT3-DXD March 2013. I had Induction and four rounds of consolidation. I reached remission after Induction but due to slow platelet recovery (60+ days to get close to 100) my treatment lasted twice as long as anticipated. I also received a lower dose of AriC and BMB between every session to ensure continued remission. I gave myself neupegon shots from day 10 until day 30ish until ANC reached 1.

I completed consolidation on Nov 17, 2013 and was deemed in full cytogenic remission in Jan 2014-yeah. I have monthly labs and qtrly clinic visits for 2 years. Every other month an Inversion 16 PCR test is conducted on my peripheral blood. By God's grace-Negative!!

I had very few side effects from chemo-only mouth sores and headaches during Induction. I felt fabulous during consolidation, teleworking full time throughout. In my opinion, I would have ALL the chemo they would give me-throw the kitchen sink at this vile stuff. The first remission is the best remission. If you can tolerate it, I'd have all the chemo I could stand.

Blessings,

Julie

Noodle,

What protocols did they use for your induction/consolidation rounds?

Amesch,

I received the standard 3-7 Idarubicin and Cytarabine during Induction and High dose Cytarabine for consolidation. I started with the highest dose-3.0, which was then dropped to 2.0 (for round two) and subsequently 1.5 (for rounds 3 and four) due to slow platelet recovery.

Julie

Amesch1,

Your protocol does sound just like my sister's. She is also being treated at MDA with an Inversion 16. She is doing the same as you and just had her 3rd consolidation round. She was supposed to have added the third type of chemo on this past round but they determined that her body was not yet able to handle it so they are waiting. She did not get the shots on her first round of chemo but has on the last two. They seem to have helped in getting her numbers back up a little quicker.

Other than fatigue and a little depression, she is doing well and I hope you are also. I hope your treatment continues to go well. Maybe you guys will run into each other at MDA sometime. :)

My husband Tony is Inv 16, he did induction And 4 rounds of high dose Cytarabine. He was in complete molecular remission for 1 year, no Inv16 mutations on any bone marrows! then unfortunately relapsed. The doctors were stunned bc his treatment went so smoothly, but even w favorable prognosis types, there's still an 80/20 split on success, someone has to fall in the 20% that relapse. We unfortunately were in that bucket.
If we had the chance to do 5,6, or 7 rounds of consolidation to be "cured" as opposed to going thru transplant, we would. He tolerated them all well, but chemo only is still your cells, there's so many more risks w transplanting a donors cells.
Stick with it, you are at the leading edge research hospital, and they will continue to take great care of you!
Best of luck
Lea

Just dropping by to see how my fellow INV 16ers are doing. I recently finished my 7th and final round of treatment two weeks ago. I've gotten so used to being consumed by this process that it will be strange once I finish my blood/platelet transfusions and go into the watching phase. Depending on my bone marrow on the 31 October, outside chance they may put me on a Decitobine (splg?) maintenance therapy for a couple of years. Since, maintenance isn't that common with AML, it would be purely experimental and there is no guarantee that this would be recommended after having very high dose multi drug induction and consolidation. I'll just keep moving forward and hopefully help as many people as I can along the way.

Amesch,

Congrats on finishing your chemo. This is s huge milestone. Next month I will be one year out from my last chemo. I'm sure your bmb onthe 31 st will be clear. Along with that I'm sure your med team will ensure that the inversion 16 is complete ly gone as well.
As far as the follow-up mx chemo, I would opt for all the treatment I could receive. But that is my opinion. So glad to hear you are doing well

Blessings
Julie