NED And Remission
Just wanted to remind you about us. Kathryn1 and I have been NED and in remisssion since June of 2009. We are almost a year out. We still read the board everyday. We still have panic attacks everytime we get our blood draws and everytime we have a CT scan and everytime we see the OB/GYN oncologist. I also have had breast problems and my last breast MRI was clear. YEA!!!! All of you inspire us and if you do not give up, we will not give up. My OB/GYN oncologist will not say we are cured, but I know 3 ladies in my area, in various stages from 2 to 3, that are all in remission and are NED. They have all been that way for almost a year. I think they need to change the statistics about ovarian cancer. When I was first DX'ed, I read that almost all women would be dead with-in a year. That is just not true. This is a managable condition, just like breast cancer, which I have been managing for 20 years. I have had cancer 4 times and I am beginning to think I am super woman or have some extra special powers, but we all know it is because of God. I can feel him in my heart and I know that is why I am still here. My mother died of ovarian cancer 13 years ago. I feel her always sitting behind me and smiling. Sometimes she gets on my nerves and I tell her to go away, but she always comes back. She refused to have surgery, because some stupid doctor told her "if we open you up, it will spread more". That is an old wife's tale and not true. I have about 10 other women who are not on the board, that e-mail me every 3 to 6 monthes and they are still in remission and NED. I wish they would post, but they just do not want to talk. The more survivors that I hear from, the better I feel. It gives you more confidence. Anyway, I think everyone on this board will reach remission and stay that way. I pray for that everyday. I want all of you to be happy and enjoying life. Paula
Comments
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So gald to hear so many
So gald to hear so many people are NED--I had surgery in July of 09 (Ovarian stage 1) and finished chemo in Dec. 09. Scans are all clean hopeful they stay that way. This board helps me feel that I will stay NED. Just wondering how everyone is feeling after they finished there treatment? I still have leg pain and chemo brain and still a little tried. Maybe it if just the winter blues--with spring on the way hope to feel better soon. Good luck to everyone--maybe one day we could just have a NED board!!! Praying for everyone!!
Kathy0 -
This comment has been removed by the ModeratorKathy T said:So gald to hear so many
So gald to hear so many people are NED--I had surgery in July of 09 (Ovarian stage 1) and finished chemo in Dec. 09. Scans are all clean hopeful they stay that way. This board helps me feel that I will stay NED. Just wondering how everyone is feeling after they finished there treatment? I still have leg pain and chemo brain and still a little tried. Maybe it if just the winter blues--with spring on the way hope to feel better soon. Good luck to everyone--maybe one day we could just have a NED board!!! Praying for everyone!!
Kathy0 -
A lot of us Google "Ovarian
A lot of us Google "Ovarian Cancer" first thing and scare ourselves silly because there are many out-dated stats out there.
Statistics are useful for tracking trends and giving doctors an idea of what works - treatment wise - and what doesn't. Statistics have no power over any of us.
I've read a lot of old posts and I know that there have been members who lost their battlel with OVC, but that does not lessen my chances of survival, or yours, or anyone else's. We will all have a slightly different story, but in the end, it's not us or the doctors who has the final say.
Like so many of you, I pray - a lot. But like I have always told my kids, God always answers prayers, but sometimes the answer is "no". I figure it's a win/win situation, either way. I am a Christian, so if I die - I go to heaven. If I don't die, I still get to go to heaven, but not anytime soon.
Carlene0 -
Two Year MarkHissy_Fitz said:A lot of us Google "Ovarian
A lot of us Google "Ovarian Cancer" first thing and scare ourselves silly because there are many out-dated stats out there.
Statistics are useful for tracking trends and giving doctors an idea of what works - treatment wise - and what doesn't. Statistics have no power over any of us.
I've read a lot of old posts and I know that there have been members who lost their battlel with OVC, but that does not lessen my chances of survival, or yours, or anyone else's. We will all have a slightly different story, but in the end, it's not us or the doctors who has the final say.
Like so many of you, I pray - a lot. But like I have always told my kids, God always answers prayers, but sometimes the answer is "no". I figure it's a win/win situation, either way. I am a Christian, so if I die - I go to heaven. If I don't die, I still get to go to heaven, but not anytime soon.
Carlene
Hi! I just reached my two year mark after having Ovarian stage 3c. and Uterine stage 2. I read so many things that had me convinced that I would have a recurrance within a year of treatment. I thank God that he had other plans for me and I am feeling wonderful, healthy and strong. Be encouraged that there is no set experation date stamped on the bottom of your foot. Enjoy living while we have today and embrace life!!! I can now believe for many more years because I have conquered fear. I pray you are all encouraged to believe for the best.
God Bless
Tricia XOXO0 -
I have been in remission now for 5 1/2 years~ Stage lll.. I never believed I would make it because all the news was so bad. I don't even think my doctor believed in me because I was so sick with the Chemo. He thought I was not trying to win the battle. Whatever...Well look at me now. Today I rode 4 horses. I am alive and living life! Statistics mean nothing we are all capable of living a full and happy life.0
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Hi Marleyboo2marleyboo2 said:I have been in remission now for 5 1/2 years~ Stage lll.. I never believed I would make it because all the news was so bad. I don't even think my doctor believed in me because I was so sick with the Chemo. He thought I was not trying to win the battle. Whatever...Well look at me now. Today I rode 4 horses. I am alive and living life! Statistics mean nothing we are all capable of living a full and happy life.
Good for you girl
It is so reassuring to hear from ladies who are in remission & 5 1/2 years is a way to go. I wish you another 5 1/2 years. 0 -
Hi Paula,
I have one
Hi Paula,
I have one question ; it's great to hear that you are in remission and I hope to claim this one day soon.
Here's my question...how many treatments of therapy did you go through? I'm working on my 4th treatment starting Monday. No particular reason, but I guess I'm just curious for all of you ladies who are NED.
You are definitely my inspiration to stay positive and do better in fighting the fight.
Take care
Sharon0 -
Nedmsfanciful said:Hi Paula,
I have one
Hi Paula,
I have one question ; it's great to hear that you are in remission and I hope to claim this one day soon.
Here's my question...how many treatments of therapy did you go through? I'm working on my 4th treatment starting Monday. No particular reason, but I guess I'm just curious for all of you ladies who are NED.
You are definitely my inspiration to stay positive and do better in fighting the fight.
Take care
Sharon
Hello Sharon,
sorry it took me so long to answer your question, but I just got done taking a **** of a nursing exam and I am mentally exhausted. I took 6 treatments of carbo/taxol. We are not in remission. We are stable and NED. That is what the oncologist calls it. Here are some facts about me. I am BRAC positive. I had a stage 2B ovarian cancer. I had only a tumor on each ovary. I was symptomatic. I was very sick, just at a stage 2. I went to DR. Neil Rosenshein at Mercy Hospital in Baltiomore. LeesaG and my surgeon are partners. He is rated top 10 in the nation for ob/gyn oncologists and number 1 on the east coast. The key for stage 1 and stage 2 people is the de-baulking surgery. When we left the hospitals are ca-125's were 10 or below. My friend Kathryn1 went to Vanderbelt University and her ca-125 after surgery was a 7. The problem is there are micro-mini cells that the doctor can not see and the CT can not pick up. We take chemo to try and kill those cells. After 6 rounds of chemo, my ca-125 only went from 10 to 5. My friend Kathryn1, only went from 7 to 5. I have been holding at 5 ever since. I don't know about doing anything special to get into remission or staying there. I eat what I want and I do what I want. I was so sick before, it is like I refuse to be sick again. I do pray alot, alot. I did cry everyday, but I say "come on, god, help me". I don't know about this whole stress thing, and thinking it causes cancer. I have a 13 year old son. He is going to put me under stress no matter what. He can't decide if he is a little boy or a young man. I just tell myself I am strong, I am healthy, and I will continue to live. I have also had stage I breast cancer 3 times in 20 years. Cancer just does not scare me anymore, like it used to. It is not a automatic death sentence. When you tell people you have cancer they look at you like they are scared to death. They just don't understand the facts. I am sure I will get some kind of cancer again in the future, but right now, I am trying not to worry about it and get on with living. Stay positive, stay positive and say 'I will win this battle". "I will fight and you can not beat me". Say it with conviction and determination. I am trying to get all the things I want to get done in life now, just in case I have a re-occurance soon. I am very realistic about this and I know what the odds are. Sorry about all of the writing, but I always have alot to say. Thank-You, Paula0 -
doctor ratingscancer survivor x 4 said:Ned
Hello Sharon,
sorry it took me so long to answer your question, but I just got done taking a **** of a nursing exam and I am mentally exhausted. I took 6 treatments of carbo/taxol. We are not in remission. We are stable and NED. That is what the oncologist calls it. Here are some facts about me. I am BRAC positive. I had a stage 2B ovarian cancer. I had only a tumor on each ovary. I was symptomatic. I was very sick, just at a stage 2. I went to DR. Neil Rosenshein at Mercy Hospital in Baltiomore. LeesaG and my surgeon are partners. He is rated top 10 in the nation for ob/gyn oncologists and number 1 on the east coast. The key for stage 1 and stage 2 people is the de-baulking surgery. When we left the hospitals are ca-125's were 10 or below. My friend Kathryn1 went to Vanderbelt University and her ca-125 after surgery was a 7. The problem is there are micro-mini cells that the doctor can not see and the CT can not pick up. We take chemo to try and kill those cells. After 6 rounds of chemo, my ca-125 only went from 10 to 5. My friend Kathryn1, only went from 7 to 5. I have been holding at 5 ever since. I don't know about doing anything special to get into remission or staying there. I eat what I want and I do what I want. I was so sick before, it is like I refuse to be sick again. I do pray alot, alot. I did cry everyday, but I say "come on, god, help me". I don't know about this whole stress thing, and thinking it causes cancer. I have a 13 year old son. He is going to put me under stress no matter what. He can't decide if he is a little boy or a young man. I just tell myself I am strong, I am healthy, and I will continue to live. I have also had stage I breast cancer 3 times in 20 years. Cancer just does not scare me anymore, like it used to. It is not a automatic death sentence. When you tell people you have cancer they look at you like they are scared to death. They just don't understand the facts. I am sure I will get some kind of cancer again in the future, but right now, I am trying not to worry about it and get on with living. Stay positive, stay positive and say 'I will win this battle". "I will fight and you can not beat me". Say it with conviction and determination. I am trying to get all the things I want to get done in life now, just in case I have a re-occurance soon. I am very realistic about this and I know what the odds are. Sorry about all of the writing, but I always have alot to say. Thank-You, Paula
I would be curious to know the source of doctor ratings. How can you find those? Thanks0 -
Doctor Ratingsfroggy1 said:doctor ratings
I would be curious to know the source of doctor ratings. How can you find those? Thanks
It was in Good House Keeping Magazine. He just received the Lifetime Achievment Award for Women's Health. Thank-You, Paula0 -
post treatmentKathy T said:So gald to hear so many
So gald to hear so many people are NED--I had surgery in July of 09 (Ovarian stage 1) and finished chemo in Dec. 09. Scans are all clean hopeful they stay that way. This board helps me feel that I will stay NED. Just wondering how everyone is feeling after they finished there treatment? I still have leg pain and chemo brain and still a little tried. Maybe it if just the winter blues--with spring on the way hope to feel better soon. Good luck to everyone--maybe one day we could just have a NED board!!! Praying for everyone!!
Kathy
I'm so glad to hear you ask this question Kathy. I have been NED for three months now and contrary to when I was undergoing treatment (I was very positive and 'up') I have been really struggling with depression this past week. I think it may just be because I recently underwent a hernia repair and after everything I have been through I just hit a wall but I don't know. I am seeing a counselor tomorrow for the first time. Hopefully that will be helpful.
Otherwise things are looking good. My neuropathy is gone and I don't get as fatigued as I used to, but emotionally I feel drained and sad and am looking for answers/help/anything to regain how happy I used to be. I'm really struggling. Maybe you are right, maybe it is just the winter blues, the weather has been dreary for so long now.
Thanks for listening,
Grace0 -
Hi Paula,cancer survivor x 4 said:Doctor Ratings
It was in Good House Keeping Magazine. He just received the Lifetime Achievment Award for Women's Health. Thank-You, Paula
I just finished
Hi Paula,
I just finished taking a taxol mainetenance infusion on Monday and I have to say it went pretty smoothly. Just a little tire is all.
They plan to do this for 2 more weeks upon which at the end of, if my numbers are lowering we continue to do for I guess as long as needed? I was always under the understanding that 35 and below was in remission, so why do you feel you are not quite in remission? My numbers are currently at 64 last I measured.
I don't know this is all so confusing sometimes.
Sharon0 -
Sharon......msfanciful said:Hi Paula,
I just finished
Hi Paula,
I just finished taking a taxol mainetenance infusion on Monday and I have to say it went pretty smoothly. Just a little tire is all.
They plan to do this for 2 more weeks upon which at the end of, if my numbers are lowering we continue to do for I guess as long as needed? I was always under the understanding that 35 and below was in remission, so why do you feel you are not quite in remission? My numbers are currently at 64 last I measured.
I don't know this is all so confusing sometimes.
Sharon
I think it's
Sharon......
I think it's just that different doctors use different terminology, and maybe even have differing thoughts on what constitutes remission. My doctor says I am in remission; Paula's doctor uses a different term/label.
NED (no evidence of disease) is a term radiologists use. Oncologists, I think, tend to call it "remission". Mine does, anyway.
A true remission is proven not just by a normal CA 125 (under 35) and clean scans, but by the test of time. With OVCA, the unfortunate fact is that most patients have a great response to first-line treatment, then experience a recurrence within a year. Were they really in remission for those 10 or 11 months? Who knows.
Carlene0 -
NEDmsfanciful said:Hi Paula,
I just finished
Hi Paula,
I just finished taking a taxol mainetenance infusion on Monday and I have to say it went pretty smoothly. Just a little tire is all.
They plan to do this for 2 more weeks upon which at the end of, if my numbers are lowering we continue to do for I guess as long as needed? I was always under the understanding that 35 and below was in remission, so why do you feel you are not quite in remission? My numbers are currently at 64 last I measured.
I don't know this is all so confusing sometimes.
Sharon
My onc uses NED. After my first bout of chemo in 2008 she said with CA "normal" and CTscans "clear" she said I was NED.
And then proceeded with maintenance..................
About 6 months later, started second round of chemo as my CA125 went up and I had a "suspicious" area on my sigmoid junction. Now 9 months of chemo and still counting..............
Remission means reduction of a prison sentence on acoount of good behavior, remitting of a debt or penalty, etc., or diminution of or period of relief from (esp. disease or pain) or forgiveness (of sins, etc)
I guess I was in remission for around 6 months with no evidence of disease!!
It is confusing! ☺ And like we all say, our doctors are each different and use terminology a little different too.
Never a dull moment, is there?
Love,
libby0
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