Anyone know the answer to this?
The part I am confused about is this.....is remission a one-shot deal? Has anyone had one recurrence, gone back into treatment, then stayed NED for a long time afterward? Can you ever be in true remission after a recurrence? I know you can be NED, based on a normal CA 125 and "clean" CT scan, but I also know that CT scans do not pick up anything really small and CA 125 is an iffy indicator, at best.
Carlene
Comments
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My oncologist has actually said "You're BACK in remission",...
My oncologist called my last chemo break my "2nd remission". I think if you have no evidence of disease and a CA125 in the normal range, it's considered a remission. That doesn't mean your cancer won't come back. But I think you can go in and out of treatment and remission, back and forth, over and over, if the chemo is able to knock your cancer back to close to microscopic. & You never know when you go into remission that it won't be multi-year and stretch on and on and on!!
Alas, I unfortunately got the results today of a needle biopsy I had on Tuesday, confirming that I am back OUT of remission with a 2nd recurrence and will be swinging back into treatment as soon as we get my new tissue assay results and the results of the CA125 drawn today, and can come up with a treatment plan both my oncologists can agree on. I'm thinking it will be weekly taxol again, since that worked so well the last time and brought me back into remission after 10 weeks. If the new tissue assays show I'm overexpressing HER2neu, we may look at Herceptin added in with the weekly taxol if my insurance allows it.0 -
Linda....I'm sorry to hearlindaprocopio said:My oncologist has actually said "You're BACK in remission",...
My oncologist called my last chemo break my "2nd remission". I think if you have no evidence of disease and a CA125 in the normal range, it's considered a remission. That doesn't mean your cancer won't come back. But I think you can go in and out of treatment and remission, back and forth, over and over, if the chemo is able to knock your cancer back to close to microscopic. & You never know when you go into remission that it won't be multi-year and stretch on and on and on!!
Alas, I unfortunately got the results today of a needle biopsy I had on Tuesday, confirming that I am back OUT of remission with a 2nd recurrence and will be swinging back into treatment as soon as we get my new tissue assay results and the results of the CA125 drawn today, and can come up with a treatment plan both my oncologists can agree on. I'm thinking it will be weekly taxol again, since that worked so well the last time and brought me back into remission after 10 weeks. If the new tissue assays show I'm overexpressing HER2neu, we may look at Herceptin added in with the weekly taxol if my insurance allows it.
Linda....I'm sorry to hear about your recurrence. I hope the chemo works for you again.
I guess the crux of what I'm wondering is this.....if you have one recurrence, are you certain to have another? Is that why they change the designation from ovarian cancer to recurrent ovarian cancer?
Carlene0 -
I think all cancers are called 'recurrent' once they recur.Hissy_Fitz said:Linda....I'm sorry to hear
Linda....I'm sorry to hear about your recurrence. I hope the chemo works for you again.
I guess the crux of what I'm wondering is this.....if you have one recurrence, are you certain to have another? Is that why they change the designation from ovarian cancer to recurrent ovarian cancer?
Carlene
I think 'recurrent' is more an adjective than a part of the cancer diagnosis. It's still OVC but has simply recurred. I'd love to think that OVC could recur only once, and then after treatment never ever come back again, but I think that's super rare. But I'll bet it DOES sometime happen! Hope so.
I know with my own rare uterine cancer, that once it recurs, it is always treated as a chronic condition and the assumption is that you may possibly achieve long remissions (even multi-year remissions), but somewhere down the road, it'll be back. I was diagnosed in September of 2008 and finished my intial treatment protocol July 1, 2009, and have had 2 recurrences already. But I don't have OVC, so that as similar as my cancer is to OVC, my experience may not directly relate to you.0 -
I think the assumption islindaprocopio said:I think all cancers are called 'recurrent' once they recur.
I think 'recurrent' is more an adjective than a part of the cancer diagnosis. It's still OVC but has simply recurred. I'd love to think that OVC could recur only once, and then after treatment never ever come back again, but I think that's super rare. But I'll bet it DOES sometime happen! Hope so.
I know with my own rare uterine cancer, that once it recurs, it is always treated as a chronic condition and the assumption is that you may possibly achieve long remissions (even multi-year remissions), but somewhere down the road, it'll be back. I was diagnosed in September of 2008 and finished my intial treatment protocol July 1, 2009, and have had 2 recurrences already. But I don't have OVC, so that as similar as my cancer is to OVC, my experience may not directly relate to you.
I think the assumption is the same with ovca.....once you have a recurrence, you will have another one (at least one), sooner or later.
I have personally not heard of anyone who had just one recurrence, was treated, then returned to NED and stayed there for years.
Carlene0 -
Nancy........how do you donancy591 said:lesson learned
So, to all the ladies in remission remember "this is as good as its going to get". I spent way to much time obsessing about a recurrence. I wish someone had sat me down and told me to enjoy myself because this is as good as its gonna get.
Nancy........how do you do that (stop obsessing about a recurrence)? It is ALL I think about. I told my doctor, this is much harder than the surgery or the chemo. I just HATE waiting to see if the other shoe is going to drop. Or WHEN, I should say, because odds are, I will have a recurrence.
Statistically, 85% of all ovac patients experience a complete remission following first line treatment. Yay for us! Oops....not so fast. Most of us will experience a recurrence within two years:
■Patients diagnosed in stage I have a 10 percent chance of recurrence.
■Patients diagnosed in stage II have a 30 percent chance of recurrence.
■Patients diagnosed in stage III have a 70 to 90 percent chance of recurrence.
■Patients diagnosed in stage IV have a 90 to 95 percent chance of recurrence.
I don't want to rain on anyone's parade, but at the same time, this disease can be such a heartbreaker - first it gives you hope (remission), then snatches it back (recurrence).
I guess I need to try harder to live in the moment. Damn! Cancer sucks! It really, really does.
Carlene0 -
HelenStandsForHopeHissy_Fitz said:Nancy........how do you do
Nancy........how do you do that (stop obsessing about a recurrence)? It is ALL I think about. I told my doctor, this is much harder than the surgery or the chemo. I just HATE waiting to see if the other shoe is going to drop. Or WHEN, I should say, because odds are, I will have a recurrence.
Statistically, 85% of all ovac patients experience a complete remission following first line treatment. Yay for us! Oops....not so fast. Most of us will experience a recurrence within two years:
■Patients diagnosed in stage I have a 10 percent chance of recurrence.
■Patients diagnosed in stage II have a 30 percent chance of recurrence.
■Patients diagnosed in stage III have a 70 to 90 percent chance of recurrence.
■Patients diagnosed in stage IV have a 90 to 95 percent chance of recurrence.
I don't want to rain on anyone's parade, but at the same time, this disease can be such a heartbreaker - first it gives you hope (remission), then snatches it back (recurrence).
I guess I need to try harder to live in the moment. Damn! Cancer sucks! It really, really does.
Carlene
If I'm recalling my survivor stories correctly, HelenStandsforHope on the Inspire board has had one recurrence and is still in remission. (she was diagnosed a LONG time ago, I can't recall exactly how long). I tend to believe that women who are cancer free for long periods of time (a decade or more) don't tend to post. My onc and my gyn/onc both tell me that a lot of women are in remission/cancer free for long periods of time.
Anything is possible.
Hugs,
Pollyanna
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Have fun while the sun shinesnancy591 said:lesson learned
So, to all the ladies in remission remember "this is as good as its going to get". I spent way to much time obsessing about a recurrence. I wish someone had sat me down and told me to enjoy myself because this is as good as its gonna get.
Have fun while the sun shines, that's my motto and I'm sticking to it. I love reading all the posts here, and some days they are very uplifting and some days not. We are definitely in a very exclusive club that I really did not want to join. Thanks for all the information and a friendly place to come to. I pray for us all everyday. I am 8 months NED and I am enjoying everyday that I have.
Elaine0 -
Life and statshockeygolf7 said:Have fun while the sun shines
Have fun while the sun shines, that's my motto and I'm sticking to it. I love reading all the posts here, and some days they are very uplifting and some days not. We are definitely in a very exclusive club that I really did not want to join. Thanks for all the information and a friendly place to come to. I pray for us all everyday. I am 8 months NED and I am enjoying everyday that I have.
Elaine
I am right there with you Elaine! Once I realized that I am in charge of nothing and have no power over anything I was able to live.
My mom was diagnosed with breast cancer twice. The first time she was agressively treated the second time she chose a lumpectomy. My mom never complained or at least not to me. The second time when she chose the lumpectomy and no further treatment we were angry with her but it did not sway her in the least. 4 yrs after her second diagnosis my mom and dad were traveling over a bridge in Siesta Key Florida when the operator of the bridge opened it as my dad was driving across. My mom was killed instantly as his car hit the end of the bridge as it opened. As it turned out my mom made the right decision.
We can not determine the length of our lives no matter how much we want to live or how much others want us to. We can however determine how we feel about the day at hand. If we cant bear the day we need to lay it on another's shoulders. You all are the shoulders. Thank you for that.0 -
Helen stands for hopeleesag said:HelenStandsForHope
If I'm recalling my survivor stories correctly, HelenStandsforHope on the Inspire board has had one recurrence and is still in remission. (she was diagnosed a LONG time ago, I can't recall exactly how long). I tend to believe that women who are cancer free for long periods of time (a decade or more) don't tend to post. My onc and my gyn/onc both tell me that a lot of women are in remission/cancer free for long periods of time.
Anything is possible.
Hugs,
Pollyanna
Dear carlen
Iread the story of Helen in inspire.com as well.
Her first recurrence was after 6 years of her Dx and it was in 1993 and she is still and thank God in remission.0 -
Hi Carlene, I think "remission" is the word used for many years, and now the more accurate term is, NED. It makes sense, because they can proclaim you "NED" with a scan and blood test, but don't really know if you are in "remission" unless the cancer does not come back.
Yes, I have read some stories of women who recur and then experience NED again, and never recur again. At the same time it is more common to recur again and again. (Therefore, "treating it as chronic disease")
If chemo worked the first time, it will usually work again, and if you get a long enough break, in between for your body to regain strength, then you can fight this disease for years. The key word is "chemo break". Of-course, there are gals, like Bonnie, who get very few chemo breaks, and go on and on. Amazing, really!!! It seems everyone is so unique and why there is no formulated treatment that is good for everyone.
I am currently on chemo break, as of today, but not in remission. My body has to have a break, in order to keep going. It won't be a long one, since I do have a coupe spots lighting up on the PET/CT. But, hopefully, it will be enough to give me the strength to fight this thing down again. Meanwhile, I am going to go on Femara (anti-estrogen). 80% of my tumors are estrogen positive, and it does work to hold back the cancer for some, so I feel good about the decision. (Meanwhile, I am not giving up on trying to get avastin for the next treatment.....)
I also wanted to share again, what my Seattle doc said to me in December. He has a few patients who are NED for many years, after 3rd and 4th line chemo (no chemo break for 3 and 4 courses of chemo). He was giving me hope that anything is possible, and not to dwell on the negative, but focus on the positive.
Carlene, what are you passionate about? Go out there and enjoy your life!
Kathleen
Celebrating 3 years this month, since dx 3C0 -
Hello Ladies,
You all have covered all of these terms that ARE a bit vague in dealing with our cancer.
All I know is; after having been in remission for a year and a half and then having to come to terms with the reality that my cancer showed signs of recurring; I went into a deep depression before accepting the fact that this is what stage IV ovca typically is about, going in and out of remission (NED/recurrence?).
Since that fateful day my cancer has recurred 3 times and I have been in brief remissions 3 times (currently in remission).
I personally chose not to focus so much on the numbers anymore and chose to use my energies during every bit of my waking hours to live, give and receive joy and make substantial contributions to everything I do and everyone I meet.
Go figure.
Sharon0 -
HelenStandsForHope
Here is a copy of what she has written on a recent Inspire thread:
I was dx. stage IIIc in May, 1987. I have not needed any treatment since March, 1994. I never did anything special - no special diet and no extra pills. I received aggressive treatment and just followed what my gyn/onc said to do. I had two surgeries (common procedure in 1987) received 6 months of IV chemo and then 6 months of IP chemo and then 6 months of oral chemo, one right after the other. In 1993 when I had a recurrence I received 12 months of IV chemo and never recurred.
Helen0 -
I read/post on Inspire, tooleesag said:HelenStandsForHope
Here is a copy of what she has written on a recent Inspire thread:
I was dx. stage IIIc in May, 1987. I have not needed any treatment since March, 1994. I never did anything special - no special diet and no extra pills. I received aggressive treatment and just followed what my gyn/onc said to do. I had two surgeries (common procedure in 1987) received 6 months of IV chemo and then 6 months of IP chemo and then 6 months of oral chemo, one right after the other. In 1993 when I had a recurrence I received 12 months of IV chemo and never recurred.
Helen
I read/post on Inspire, too and I know Helen's story is truly one of inspiration and hope. I think, like Helen, that the key is aggressive treatment. I am still upset that my doctor would not give me IP chemo. Do they ever use IP treatments for a recurrence?
Carlene0 -
Intraperitoneal (IP) Chemotherapy for Ovarian/recurrenceHissy_Fitz said:I read/post on Inspire, too
I read/post on Inspire, too and I know Helen's story is truly one of inspiration and hope. I think, like Helen, that the key is aggressive treatment. I am still upset that my doctor would not give me IP chemo. Do they ever use IP treatments for a recurrence?
Carlene
how is this for quick turnaround time reply to your answer. Now you see why your DR did not use IP. July 2008
What about Intraperitoneal Chemo for those with RECURRENCE of ovarian cancer after initial treatment? In a review of salvage therapy for ovarian cancer, Intraperitoneal (IP) therapy with platinum was recommended as second-line therapy for patients with platinum-sensitive relapsed ovarian cancer. However, the basis for this preference is not clear. At present, there seems to be little role for IP chemotherapy in the management of patients with platinum-resistant disease or patients with residual tumors of any size (especially larger than 2 cm
National Cancer Institute suggests that IP chemotherapy be strongly considered for women with small volume residual tumor after maximal surgical resection for stage III disease. A thorough discussion with the patient about the potential benefits and toxicities associated with such an approach is mandatory. At least for the present, a standard intravenous regimen of paclitaxel plus carboplatin is an acceptable alternative to IP therapy for these patients because of the toxicity issues. Ongoing studies will seek to identify effective yet more tolerable IP regimens for further study in subsequent phase III trials. AGAIN: Women with optimally reduced stage III ovarian cancer and a good performance status should at least be counseled regarding this potentially superior option of therapy
http://www.dailystrength.org/experts/dr-orrange/article/intraperitoneal-ip-chemotherapy-for-ovarian-cancer0 -
IP chemoHeartofSoul said:Intraperitoneal (IP) Chemotherapy for Ovarian/recurrence
how is this for quick turnaround time reply to your answer. Now you see why your DR did not use IP. July 2008
What about Intraperitoneal Chemo for those with RECURRENCE of ovarian cancer after initial treatment? In a review of salvage therapy for ovarian cancer, Intraperitoneal (IP) therapy with platinum was recommended as second-line therapy for patients with platinum-sensitive relapsed ovarian cancer. However, the basis for this preference is not clear. At present, there seems to be little role for IP chemotherapy in the management of patients with platinum-resistant disease or patients with residual tumors of any size (especially larger than 2 cm
National Cancer Institute suggests that IP chemotherapy be strongly considered for women with small volume residual tumor after maximal surgical resection for stage III disease. A thorough discussion with the patient about the potential benefits and toxicities associated with such an approach is mandatory. At least for the present, a standard intravenous regimen of paclitaxel plus carboplatin is an acceptable alternative to IP therapy for these patients because of the toxicity issues. Ongoing studies will seek to identify effective yet more tolerable IP regimens for further study in subsequent phase III trials. AGAIN: Women with optimally reduced stage III ovarian cancer and a good performance status should at least be counseled regarding this potentially superior option of therapy
http://www.dailystrength.org/experts/dr-orrange/article/intraperitoneal-ip-chemotherapy-for-ovarian-cancer
Can we get the "dummies" version of this??? LOL Froggy0 -
Actually, what I read hereHeartofSoul said:Intraperitoneal (IP) Chemotherapy for Ovarian/recurrence
how is this for quick turnaround time reply to your answer. Now you see why your DR did not use IP. July 2008
What about Intraperitoneal Chemo for those with RECURRENCE of ovarian cancer after initial treatment? In a review of salvage therapy for ovarian cancer, Intraperitoneal (IP) therapy with platinum was recommended as second-line therapy for patients with platinum-sensitive relapsed ovarian cancer. However, the basis for this preference is not clear. At present, there seems to be little role for IP chemotherapy in the management of patients with platinum-resistant disease or patients with residual tumors of any size (especially larger than 2 cm
National Cancer Institute suggests that IP chemotherapy be strongly considered for women with small volume residual tumor after maximal surgical resection for stage III disease. A thorough discussion with the patient about the potential benefits and toxicities associated with such an approach is mandatory. At least for the present, a standard intravenous regimen of paclitaxel plus carboplatin is an acceptable alternative to IP therapy for these patients because of the toxicity issues. Ongoing studies will seek to identify effective yet more tolerable IP regimens for further study in subsequent phase III trials. AGAIN: Women with optimally reduced stage III ovarian cancer and a good performance status should at least be counseled regarding this potentially superior option of therapy
http://www.dailystrength.org/experts/dr-orrange/article/intraperitoneal-ip-chemotherapy-for-ovarian-cancer
Actually, what I read here is that IP chemo is a "superior" option and women with "optimally reduced stage III ovarian cancer" should be strongly considered for IP treatment.
Did I miss something?
Carlene0
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