Hmm- How do I not think of cancer for three months?

froggy1

I had my "sum it up" meeting with my gyn-onc., after almost two years of fighting stage 3(sept.08) I had the standard carbo/taxo(8 treatments), a little break for emergency bowel resection from scar tissue, then a year of maintenance taxol.
My CT scan showed NED...I'm not really sure how long I have been in remission. My Doc counts your completion of first round chemo, with low numbers, as the start. That would put me around 17 months. BUT, I'm not sure how maintenance fits into all this. In any case, my CA125 has not been above 9 for a long time.
I have now been let loose, with my next check-up not being until October. I am SO nervous.
I can't imagine no labs, no chemo, no doc visits for three months.
I am having pain in my neck area and am sure it's my lymph nodes! LOL
I know I should be happy for the break, but it is so hard to just ignore this!

Hissy_Fitz

Congrats, Froggy! The
Congrats, Froggy! The statistics say that if you do not have a recurrence in the 24 months following first line treatment, your chances of long-term survival go way, way up. I would also like to know how to factor in the maintenance chemo. I have not been able (online) to find anyone who recurred while on maintenance. (Which makes me wonder why they don't just leave us on it indefinitely, but that's another topic.) Does that mean our clock starts ticking at the end of the Taxol? Or do we get to count that whole year as part of our remission? My doctor agrees with yours, basically, though he can't/won't give me a straight answer. He says all we can do is wait and see. The Taxol maintenance study was terminated early and all that data was lost - meaning it was never collated and published. Furthermore, he does not consider the monthly Taxol infusions "treatment". I am not "in treatment", according to my doctor, and my remission was "confirmed" when he got the results of my CT scan back and it was clean, and my CA 125 was normal. He told me about two months prior to that, however, that he was almost certain I was in remission, and it was at that appointment we began to discuss the maintenance chemo.

There is a woman in my local support group who was diagnosed and treated years ago. I don't remember how many years, but she did the clinical trial for the Carbo/Taxol combo that is considered the "gold standard" today. So I'm thinking 8-10 years? Anyway, she has never had a recurrence. She told me last month that our doctor had been doing a CA 125 test and CT scan every six months for several years, but recently told her that once a year was sufficient. She begged him to keep her on the six month schedule. He agreed, as far as the blood work, but told her no more CT scans unless she becomes symptomatic or her CA 125 starts to rise. She said she suffered from tremendous anxiety every time he increased her time between check ups - first from monthly to every three months, then to every six. She did not think she could bear to go a year without a CA 125 test because she needs the reassurance. She needs a lab report to tell her she doesn't have cancer, even after ten years. I understand completely. And I hate it. I hate what this rotten, sneaky, cowardly disease does to us - not just our body, but our mind and our spirit. I wish it were more "real" so I could beat the crap out of it. Seriously, I do.

Carlene

froggy1

Hissy_Fitz said:

Congrats, Froggy! The
Congrats, Froggy! The statistics say that if you do not have a recurrence in the 24 months following first line treatment, your chances of long-term survival go way, way up. I would also like to know how to factor in the maintenance chemo. I have not been able (online) to find anyone who recurred while on maintenance. (Which makes me wonder why they don't just leave us on it indefinitely, but that's another topic.) Does that mean our clock starts ticking at the end of the Taxol? Or do we get to count that whole year as part of our remission? My doctor agrees with yours, basically, though he can't/won't give me a straight answer. He says all we can do is wait and see. The Taxol maintenance study was terminated early and all that data was lost - meaning it was never collated and published. Furthermore, he does not consider the monthly Taxol infusions "treatment". I am not "in treatment", according to my doctor, and my remission was "confirmed" when he got the results of my CT scan back and it was clean, and my CA 125 was normal. He told me about two months prior to that, however, that he was almost certain I was in remission, and it was at that appointment we began to discuss the maintenance chemo.

There is a woman in my local support group who was diagnosed and treated years ago. I don't remember how many years, but she did the clinical trial for the Carbo/Taxol combo that is considered the "gold standard" today. So I'm thinking 8-10 years? Anyway, she has never had a recurrence. She told me last month that our doctor had been doing a CA 125 test and CT scan every six months for several years, but recently told her that once a year was sufficient. She begged him to keep her on the six month schedule. He agreed, as far as the blood work, but told her no more CT scans unless she becomes symptomatic or her CA 125 starts to rise. She said she suffered from tremendous anxiety every time he increased her time between check ups - first from monthly to every three months, then to every six. She did not think she could bear to go a year without a CA 125 test because she needs the reassurance. She needs a lab report to tell her she doesn't have cancer, even after ten years. I understand completely. And I hate it. I hate what this rotten, sneaky, cowardly disease does to us - not just our body, but our mind and our spirit. I wish it were more "real" so I could beat the crap out of it. Seriously, I do.

Carlene

Thanks Carlene
Thanks for the reply,
I have many of the same questions, but no answers. My Doc doesn't like to give survival stats or really talk about "my chances." He basically agreed with what I said. "The whole thing is a crap shoot." I guess I wanted to hear, "You have a good chance of beating this." But, no such words were uttered..
My husband was happy with the visit and said, "What can we do to keep this going?" He wanted to keep with organic foods and a pure diet. THEN, he pulled into Dunkin Donuts for coffee and donuts to celebrate! LOL
I am tired of trying to analyze this stupid disease. I started reading research the other night and gave up. One of the studies was the MD Anderson one about the role of stress. I keep thinking maybe I could have prevented this, but then how could I have avoided my last ten years of Alzheimer's eldercare of my parents??? AND, who is stressless? LOL I want to meet them....
Luv this board, Ginny (aka Froggy)

JoanC

Hissy_Fitz said:

Congrats, Froggy! The
Congrats, Froggy! The statistics say that if you do not have a recurrence in the 24 months following first line treatment, your chances of long-term survival go way, way up. I would also like to know how to factor in the maintenance chemo. I have not been able (online) to find anyone who recurred while on maintenance. (Which makes me wonder why they don't just leave us on it indefinitely, but that's another topic.) Does that mean our clock starts ticking at the end of the Taxol? Or do we get to count that whole year as part of our remission? My doctor agrees with yours, basically, though he can't/won't give me a straight answer. He says all we can do is wait and see. The Taxol maintenance study was terminated early and all that data was lost - meaning it was never collated and published. Furthermore, he does not consider the monthly Taxol infusions "treatment". I am not "in treatment", according to my doctor, and my remission was "confirmed" when he got the results of my CT scan back and it was clean, and my CA 125 was normal. He told me about two months prior to that, however, that he was almost certain I was in remission, and it was at that appointment we began to discuss the maintenance chemo.

There is a woman in my local support group who was diagnosed and treated years ago. I don't remember how many years, but she did the clinical trial for the Carbo/Taxol combo that is considered the "gold standard" today. So I'm thinking 8-10 years? Anyway, she has never had a recurrence. She told me last month that our doctor had been doing a CA 125 test and CT scan every six months for several years, but recently told her that once a year was sufficient. She begged him to keep her on the six month schedule. He agreed, as far as the blood work, but told her no more CT scans unless she becomes symptomatic or her CA 125 starts to rise. She said she suffered from tremendous anxiety every time he increased her time between check ups - first from monthly to every three months, then to every six. She did not think she could bear to go a year without a CA 125 test because she needs the reassurance. She needs a lab report to tell her she doesn't have cancer, even after ten years. I understand completely. And I hate it. I hate what this rotten, sneaky, cowardly disease does to us - not just our body, but our mind and our spirit. I wish it were more "real" so I could beat the crap out of it. Seriously, I do.

Carlene

Congrats Froggy and Carlene quick question
"The statistics say that if you do not have a recurrence in the 24 months following first line treatment, your chances of long-term survival go way, way up!"

Carlene, I love that line. Where did you find those statistics? I want to blow it up to poster size and hang it on my wall. I am 21 months out from chemo( last chemo was Oct6 '08) with no recurrence so that is exciting to hear. My next CA125 and CT scan is Sept 15th Hoping all will be NED again.

Congratulations Froggy...you go girl! That is wonderful.

Unknown

This comment has been removed by the Moderator

msfanciful

Congratulations Froggy,
It
Congratulations Froggy,

It is almost too good to be true isn't it?

I hope I can get to the point of never thinking about this monster!

I'm pretty sure though even if I were in remission for 10years, how could I not ever think of cancer in the back of my mind after how its changed my life.

So enjoy and let's not give this disease another win over our lives!


Sharon