Remission

Susan53

When do you count for remission. What is considered remission? When do you start to count for NED is it when my organs affected were removed, or when I had a clear pet scan, or when my cat scan after treatment was done. Not really sure about all this need a little help. Thanks Sharon

Tethys41

Well
I don't know when you had a clear PET scan. Typically, we don't have any diagnostics done until chemo is complete. If that CT scan is clear, you are considered NED, as long as your CA-125 is in the normal range. If you had a clear PET scan earlier, however, and your CA-125 was normal then, I think you would be considered NED at that time.

poopergirl14052

ned
sounds to me you should be doing the dance of ned!!!!!!!!!!!!..val

Susan53

Tethys41 said:

Well
I don't know when you had a clear PET scan. Typically, we don't have any diagnostics done until chemo is complete. If that CT scan is clear, you are considered NED, as long as your CA-125 is in the normal range. If you had a clear PET scan earlier, however, and your CA-125 was normal then, I think you would be considered NED at that time.

I had the pet scan
I had the pet scan just after my first chem treatment. They were trying to get insurance approval and could not get it until the 3rd try. I had the cat scan done after all the treatments chemo and internal radiation. I only had one CA125 test done when they suspected the cancer and it showed normal. I had 3 different cancers at that time so they say the CA-125 is not a marker for me. Sharon

Susan53

poopergirl14052 said:

ned
sounds to me you should be doing the dance of ned!!!!!!!!!!!!..val

trying to dance
Thanks Val I am trying to dance , but very worried about reoccurance. I am having a hard time getting past that worry. Sharon

Tethys41

Susan53 said:

trying to dance
Thanks Val I am trying to dance , but very worried about reoccurance. I am having a hard time getting past that worry. Sharon

The Worry
Sharon,
We all have it. But it is best to come to terms with it, as stress is not known to contribute to a successful remission plan. There is a lot of information on past postings about diet, supplements, and stress reduction, to name a few things, that some of us are doing in an attempt to keep this disease at bay. From my experience and from what I see on the board from others doing it, it appears to be working much of the time. A good start, if you want to be proactive, would be to read the book "Anticancer: A New Way of Life by David Servan-Schreiber." It beats just sitting around worrying. Hope this helps.

Radioactive34

Tethys41 said:

The Worry
Sharon,
We all have it. But it is best to come to terms with it, as stress is not known to contribute to a successful remission plan. There is a lot of information on past postings about diet, supplements, and stress reduction, to name a few things, that some of us are doing in an attempt to keep this disease at bay. From my experience and from what I see on the board from others doing it, it appears to be working much of the time. A good start, if you want to be proactive, would be to read the book "Anticancer: A New Way of Life by David Servan-Schreiber." It beats just sitting around worrying. Hope this helps.

NED is scary...when it is
NED is scary...when it is new. It is for me...just a few days old. Though my NED does not feel like it. At some point it will sink in. How long do you stay immuno compromised after chemo? I know I will be anemic for a few months.

Hissy_Fitz

Susan....
First of all,
Susan....

First of all, remember that remission (or NED, as we sometimes call it), is never an absolute, that's why the more correct term is "no evidence of disease." Most doctors count a clear CT (or PET) scan and a normal CA125 as evidence of remission and start counting from there. And that's usually the end of first line treatment. But in fact, your remission might have begun months earlier, but simply was not confirmed.

I was diagnosed in Sept of 2009 and started chemo (after the surgery) in Oct. I was officially pronounced in remission the following March, after I was done with treatment and sent for a CT scan, although my CA125 had been very normal (below 10) for several months prior to that.

My family tends to be overly optimistic. They hear "remission" and go, "Yea.....Mom's cured!!!" Mom is not cured. Mom's remission, in fact, may even have ended and we just don't know it yet, because I haven't had a CT scan in almost 3 months (my CA125 is still normal), and even if I had, there is no way to detect a very early recurrence.

I am truly not trying to put a damper on anyone's enthusiasm. I just wanted to point out that you can easily drive yourself crazy with all the numbers and terms and trying to count up the weeks/months of remission, because we all hope for long remissions. We count on them to reassure us. Sometimes we get lucky, and sometimes we don't. I always feel like I am waiting for the other shoe to drop, though I try to think about ir (recurrence) as little as possible.

Carlene

Susan53

Hissy_Fitz said:

Susan....
First of all,
Susan....

First of all, remember that remission (or NED, as we sometimes call it), is never an absolute, that's why the more correct term is "no evidence of disease." Most doctors count a clear CT (or PET) scan and a normal CA125 as evidence of remission and start counting from there. And that's usually the end of first line treatment. But in fact, your remission might have begun months earlier, but simply was not confirmed.

I was diagnosed in Sept of 2009 and started chemo (after the surgery) in Oct. I was officially pronounced in remission the following March, after I was done with treatment and sent for a CT scan, although my CA125 had been very normal (below 10) for several months prior to that.

My family tends to be overly optimistic. They hear "remission" and go, "Yea.....Mom's cured!!!" Mom is not cured. Mom's remission, in fact, may even have ended and we just don't know it yet, because I haven't had a CT scan in almost 3 months (my CA125 is still normal), and even if I had, there is no way to detect a very early recurrence.

I am truly not trying to put a damper on anyone's enthusiasm. I just wanted to point out that you can easily drive yourself crazy with all the numbers and terms and trying to count up the weeks/months of remission, because we all hope for long remissions. We count on them to reassure us. Sometimes we get lucky, and sometimes we don't. I always feel like I am waiting for the other shoe to drop, though I try to think about ir (recurrence) as little as possible.

Carlene

I think that is where my problem is that my family and friends seem to think since everything was removed from all 3 cancers that everything is fine. I myself know that any of these cancers can return at any given time. My biggest worry is that I only have the marker of a cat scan to go by. I know the CA-125 isn't always the right answer to the cancers but it could give you a hint that something is going on. My doctor wants me to monitor how I feel which is hard to know since I didn't feel much of anything when I had 3 different cancers growing. I think I am just having a hard time right now feeling like I am in limbo and I am walking a tight rope with no safety net under it. It maybe time that I try to make an appointment with a counselor or someone. I have always tried to be so positive and it is getting harder everyday. Sorry for my whinning. Just needed to vent because I can't use the blood test to fall back on. Sharon Hopefully tomorrow will be better, thanks for listening to me.

carolyn45

Susan53 said:

I think that is where my problem is that my family and friends seem to think since everything was removed from all 3 cancers that everything is fine. I myself know that any of these cancers can return at any given time. My biggest worry is that I only have the marker of a cat scan to go by. I know the CA-125 isn't always the right answer to the cancers but it could give you a hint that something is going on. My doctor wants me to monitor how I feel which is hard to know since I didn't feel much of anything when I had 3 different cancers growing. I think I am just having a hard time right now feeling like I am in limbo and I am walking a tight rope with no safety net under it. It maybe time that I try to make an appointment with a counselor or someone. I have always tried to be so positive and it is getting harder everyday. Sorry for my whinning. Just needed to vent because I can't use the blood test to fall back on. Sharon Hopefully tomorrow will be better, thanks for listening to me.

Waiting for the other shoe...
I really resonate with you, Susan. I had a super response to first line chemo, and literally everyone told me how great I looked, how they could hardly believe I was ever sick, how grateful I must be for being cured, etc. It's hard to say to people who are so relieved, "Hey, this is a treatable, not curable cancer." I've become quite aware of how others are scared to even ask about any fears of permanent damage or recurrence. They don't want to think about it. They don't want to lose us, and they don't want to look at their own mortality. We don't have the luxury of ignoring it, but we're not going to push it in anyone's face either.

I think seeing a counselor can be incredibly helpful as long as you truly like him/her and feel you can open your heart to the therapist and vice versa. I was a psychotherapist for 25 years and did plenty of my own counseling along the way, and I believe the credentials of a counselor (MA, PhD, or MD) don't matter nearly as much as quality of heart. Any therapist worth their salt will be happy to spend 15 minutes on the phone or in person. (I used to do half hour free consults in my office.) If the therapist is extremely rigid about time or money (no sliding scale, appointment time down to the minute), this is often a clue as to heart vs. ego/money gratification.

All that being said, cancer is, at least for me, more of a spiritual than a psychological journey, maybe because I know only too well the limits of psychotherapy alone. And spiritual doesn't mean religious, although it doesn't exclude it. I've explored most conventional and alternative religions and paths and have nestled into something that enables me to keep the personal Jesus of my childhood but add the sophistication of deep psychological/spiritual insight. Certainly the last 7 months have challenged all of my beliefs and deepened in an amazing way my surrender to the Love that birthed me. But that doesn't mean I'm not confused and scared at times. A good therapist who is also spiritual can be a much needed guide to finding your own inner peace, and you're encouraged to explore those negative feelings (which is not whining or venting) in a safe and sacred context.

Susan53

carolyn45 said:

Waiting for the other shoe...
I really resonate with you, Susan. I had a super response to first line chemo, and literally everyone told me how great I looked, how they could hardly believe I was ever sick, how grateful I must be for being cured, etc. It's hard to say to people who are so relieved, "Hey, this is a treatable, not curable cancer." I've become quite aware of how others are scared to even ask about any fears of permanent damage or recurrence. They don't want to think about it. They don't want to lose us, and they don't want to look at their own mortality. We don't have the luxury of ignoring it, but we're not going to push it in anyone's face either.

I think seeing a counselor can be incredibly helpful as long as you truly like him/her and feel you can open your heart to the therapist and vice versa. I was a psychotherapist for 25 years and did plenty of my own counseling along the way, and I believe the credentials of a counselor (MA, PhD, or MD) don't matter nearly as much as quality of heart. Any therapist worth their salt will be happy to spend 15 minutes on the phone or in person. (I used to do half hour free consults in my office.) If the therapist is extremely rigid about time or money (no sliding scale, appointment time down to the minute), this is often a clue as to heart vs. ego/money gratification.

All that being said, cancer is, at least for me, more of a spiritual than a psychological journey, maybe because I know only too well the limits of psychotherapy alone. And spiritual doesn't mean religious, although it doesn't exclude it. I've explored most conventional and alternative religions and paths and have nestled into something that enables me to keep the personal Jesus of my childhood but add the sophistication of deep psychological/spiritual insight. Certainly the last 7 months have challenged all of my beliefs and deepened in an amazing way my surrender to the Love that birthed me. But that doesn't mean I'm not confused and scared at times. A good therapist who is also spiritual can be a much needed guide to finding your own inner peace, and you're encouraged to explore those negative feelings (which is not whining or venting) in a safe and sacred context.

Thanks
Thanks you have helped me tremendously. Our loved ones can't possibly know how we are feeling and you are right they don't want to think about it. I believe that your loved ones have made things how they would want them to be. It is not up to me to attempt to straighten them out and change their mind. I am the one that has to learn to find my own inner peace with all this, and I really am trying. Some days are harder than other days and I will keep working on it. I know God has blessed me in so many ways and I thanks hime everyday. Sharon

Cafewoman53

Susan53 said:

Thanks
Thanks you have helped me tremendously. Our loved ones can't possibly know how we are feeling and you are right they don't want to think about it. I believe that your loved ones have made things how they would want them to be. It is not up to me to attempt to straighten them out and change their mind. I am the one that has to learn to find my own inner peace with all this, and I really am trying. Some days are harder than other days and I will keep working on it. I know God has blessed me in so many ways and I thanks hime everyday. Sharon

Ned
I was diagnosed in June of 2010 and have yet to meet Ned in a way I am okay with that because I don't get the highs and lows of thinking it's gone only to find next visit it is back.
Even if you achieve a remission we all know it most likely be back at some point. try to enjoy the periods without treatment and strengthen your body and spirit for the next round. It doesn't have to take all our happiness. It's hard to depend on your loved ones for support they don't want to face what our future might hold. My daughters have a hard time talking dealing with my disease and one of them is an oncology nurse. So this is where I come when I need to talk to someone who understands what I deal with.
And there are miracles they happen everyday in the world of medicine who is to say there is not one with your name on it ? You are doing better than you think.
Colleen