Sgootee,
I actually have never heard of this particular inversion of chromosome 16. Did you have a transplant or were you chemo only ? I am happy you are doing well one year out. My anniversary of diagnosis is June 22- one year fighting with multiple inductions, more chemo, radiation, clinical trial and transplant 162 days ago.
So happy to have new members here. I learn something new every day. I will add you to my daily prayers.
Peace,
Andrea

Sgootee,

Congratulations on your long remission. Yes, I have heard of inv 16 M4 AML and it has a very favorable prognosis. I assume that you did not get a transplant. You should do well, and I hope you are enjoying your newly found health.

Glad you joined us.

Cliff

No transplant. I was lucky. They say it is favorable but everything about AML is scary because it is such a beast. I really appreicate your words of encourment. I know that INV 16 affects a small amount of people. Andrea congrats on 162 thats awesome. Cliff I hope your health is going well. Anyone with AML has a special place in my heart.

Sgootee, So happy for you and your remission. I have been in remission for a year also. It is acturally a year and 6 weeks. LOL
I did not have a transplant either. I know I am very, very fortunate in that. And I am doing well. I try not to think about the AML coming back. Just get busy and enjoy your life. None of us know how long we have. That is what I tell myself.
Andrea, I am so impressed with your strength. You are such a warrior and an inspiration to us all.

Blessing

lily

Sgootee -- I had/have (?) and 8-21 translocation and am a 3.5 year survivor -- like you, chemo only. No fear!!! Just live like you did before you were Dxed. Any of us could be wiped out by anything at any time. You will probably die of a heart attack. So for now, don't worry about it ... it is in the past. -- dave

PS -- of course, we do not have the stamina that we used to have, so enjoy, but don't over-do it. I did hear of an AML survivor who just ignored his hitting the wall and ended up having a fatal heart attack, so we do need to use good sense ... but there is no cause for worry or concern ... what will be, will be.

Sgootee: So glad, from what I heard of our friends, about the good prognosis of this inversion. I never found out about my cythogenesis (?) since those cromosomic tests are not available in Central America.
I have been in remission 1 year and 7 months, on chemo only, too.

Dave, what is this about stamina? Havent heard about it and since I tend to push more than recomended, Id like to know...

Blessings to all of my dear friends, and specially for you Sgootee

Shimauta

Shimauta -- you are quite a bit younger than most of us and might not be bothered so much with a decrease in stamina. I have heard on this list that most of the older folks who have been thru chemo take a long time to get their old stamina back, and perhaps due to age, some never do. I am going on 70 now so it is difficult for me to tell. I used to be able to work hard outside in the sun almost all day. Now after about a half hour I get light headed and know that I have hit the wall and can do myself real damage if I push much further. My warning was to not violate what your body is telling you. Those who do might pass out (which, take my word for it, can be very damaging when you hit your head on the floor or something worse), or they might have a stroke or a heart attack. The problem is that chemo has the effect of damaging your organs because it denies them of the healthy blood cells temporarily. Some might totally recover from this 100% ... but I doubt it. My feeling is between the chemo and age, there is no such thing as 100%. I am probably at about 20% when it comes to how much hard work I can do ... and I do some very hard work, but usually not more than a half hour once per day.

I hope this helps -- dave

I do tend to over do the exercise. Cardio in the mourning and lifting in the afternoon on top of working a reg shift and then off duty work three times a week. The activity keeps me going and makes me feel like everything is normal which it is now. I do worry some about relapse but the longer remission goes the more comfortable I get. I really appreciate everyone responding. My wife doesn't like to talk about this stuff and simply says I'm cured. I wish it was that easy.

Sgotee,

My husband doesn't like to talk about aml. He states I'm cured and I won't relapse.
I am almost 14 months since diagnosis and 10 months post transplant.
Relapse is my fear constantly I wish I could shake it.
I come from a small country with one transplant centre. There was 8 of us transplanted within days of each other 5 for aml 3 for other blood cancers 2 amlers have relapsed but each day I need to put this from my mind and get on with my life. My children had such a bad year I'm trying to make things up to them now and do things the missed out on so I push myself a little further each day
Congratulations on your good cytogenetics , it's a beast of a disease and anything in your favour is great. I have the horrid FLT 3 which puts me in the high risk area.
Each day I wake I say I live to fight another day.
I think your fantastic that you work out that much and hold a job also.
Well done you.

Exercise is good, but LISTEN to your body. It used to be when you pushed it you would increase your stamina and build yourself up. Well, that could still be happening for you, but at nearly 70, I doubt it is for me. I might tear something down and not have the stuff in me to build it back up. I used to life weights and tearing it down and building it up was routine. I understand the process, but as one nurse told me when I was overdoing the walking around the hospital -- your internal organs need that blood more than your muscles.

Yes, many if not most on this list do worry about relapse. I never thought I would survive to start with, so maybe that is why I do not give it another thought. Even if I was living out a normal life I would not have too many years to go in any event. Fifty years from now it really will not matter. What matters is what we make of today -- this one more day that God has given us. Yes, Planxty, just take it one day at a time -- that is the right attitude.

Look at it this way - every day you live you increase your chances of not having a relapse ... ever. When you get to 3.5 years like I am your chances of relapse get exponentially lower. Most people when they live a day have one less day to live. But when we live a day, our chances of living many more days increase. So have confidence and enjoy the days that you have. No one is guaranteed anything. -- dave

Shimauta, I missed it along the way that you are chemo only. There are a lot of us here. And we are doing very well. So encouraging.

Andrea, I just can't imagine multiple inductions. One about killed me. You are such a warrior! I am so happy for you and your recovery.

lily

Sqootee,

I too have Inverse 16 with a negative C-kit and FLT 3 test putting my treatment on a favorable (chemo only) path. I just posted my intro if you would like more info. I am hoping to start consolidation # 2 tomorrow.
How many consolidation treatments did you have?

Julie

I had 3 consolidation rounds. I also had chemo only with really no side effects other than mouth sores. I am 1 year in remission and have a neg FLT 3 and a pos C-KIT. The doctors say there is not alot known about the C-KIT other than it may be adverse. They also say that my age and health and the INV 16 are whats most important. Good luck on your next round. How many are they saying you are to have?

The doctor's protocol is four consolidation treatments. BTW, while waiting for my cytogetic testing to return during induction, there were two other Inv 16 patience on my floor. It inspires me to hear about people in remission! I am praying for platelets as a head to my 2 pm appiontment.

Julie

the nurses on my floor would do the platelett dance for me when I was praying for more. So I will be doing the dance for you :-)