I never liked the way NED danced anyway!
I don't post a whole lot, but 'am sad today. 'Was diagnosed 3C Sept. 2008, extensive debulking, 8 rounds of carbo/taxo, an extra surgery for bowel obstruction 11/09, and a year of taxol maintenance, 'finished in June.
In June 2010, 'had a CT and was declared NED... WELL, I went back for my 3 month checkup last week and my CA125 was 14.(my baseline is 5) I was having bowel issues, so the Doc said let's get a CT to make sure, but I'm not worried about cancer.
The CT showed no bowel issues, but lymph node issues. PET/CT was ordered and YES, the cancer is back. It is in different locations, some inoperable. My only choice is chemo, no radiation or surgery.
I am starting a fine cocktail of carbo/doxil, if I can tolerate it and don't react to the carbo, as I had it before. 'Guess they do a "wheel test?"
The Doc wasn't pessimistic or optimistic about my years of survival, but I guess the standard isn't good, although we never like to look at stats. He said 50% survive more than 2 years and 50% don't.. That seemed low to me. (Carlene-the stat lady, where are you?)
I think my Doc kind of feels as I do, that the CA125 doesn't really reflect what my body is doing. I think if I had had a PET in June, the cancer would have been there.
I guess it's time to stop crying and put on my big girl pants while they still fit, 'still hoping to get to a darn size 8. Can't I at least get something out of this? Also need to assess the wig situation....
Hugs to all, Ginny
Comments
-
Dear Ginny
Sooo sorry to hear this news....I think recurrance is worse than the initial diagnosis...it's tough...It took me 3 months to deal with my mothers. BUT you will deal with it. Forget the stats. They really have gotten better and the treatments are better. Also, there are a number of GREAT trials going on as well, so the stats are improving especially at the centers where they are doing trials. The "good news" is Doxil is a great drug...you can take it forever and you don't have to have it with the carbo if carbo is truly that bad....I am sooo sorry though0 -
I miss dancing with good ol'd NED! (((Ginny)))Lisa13Q said:Dear Ginny
Sooo sorry to hear this news....I think recurrance is worse than the initial diagnosis...it's tough...It took me 3 months to deal with my mothers. BUT you will deal with it. Forget the stats. They really have gotten better and the treatments are better. Also, there are a number of GREAT trials going on as well, so the stats are improving especially at the centers where they are doing trials. The "good news" is Doxil is a great drug...you can take it forever and you don't have to have it with the carbo if carbo is truly that bad....I am sooo sorry though
Please don't dispair! I was diagnosed III-c in October of 2008 (so similar to you!), with my initial surgery and adjuvant treatment lasting through June 2009. By November 2009 I was ALREADY where you find yourself today, with my 1st recurrence. So you have had an extra year to get stronger and battle-ready, and you're going to be fine.
The news of recurrence is heartbreaking, FOR SURE. It was like attending my own funeral to see the hard crying and anguish of my family and friends, one after the next, when they heard my news a year ago. But now, a year later, everyone has gotten used to the news and to my 'condition'; in fact it's gotten hard to even play the 'cancer card' to get out of things I don't want to do!. In the past year I did 17 rounds of taxol and 2 rounds (so far) of Doxil, and have been able to stay largely symptom-free and enjoy an excellent quality of life. During all of past year's treatment I took a 9-day cruise to the Caribbean and spent a week at the beach with my grandkids, and continued to participate in my family business and have my grandkids stay over almost every weekend. Chemo is an interruption in your life, but it does not define your life. It still sucks BIG TIME. But it's do-able. (((Ginny)))0 -
Thanks Lindalindaprocopio said:I miss dancing with good ol'd NED! (((Ginny)))
Please don't dispair! I was diagnosed III-c in October of 2008 (so similar to you!), with my initial surgery and adjuvant treatment lasting through June 2009. By November 2009 I was ALREADY where you find yourself today, with my 1st recurrence. So you have had an extra year to get stronger and battle-ready, and you're going to be fine.
The news of recurrence is heartbreaking, FOR SURE. It was like attending my own funeral to see the hard crying and anguish of my family and friends, one after the next, when they heard my news a year ago. But now, a year later, everyone has gotten used to the news and to my 'condition'; in fact it's gotten hard to even play the 'cancer card' to get out of things I don't want to do!. In the past year I did 17 rounds of taxol and 2 rounds (so far) of Doxil, and have been able to stay largely symptom-free and enjoy an excellent quality of life. During all of past year's treatment I took a 9-day cruise to the Caribbean and spent a week at the beach with my grandkids, and continued to participate in my family business and have my grandkids stay over almost every weekend. Chemo is an interruption in your life, but it does not define your life. It still sucks BIG TIME. But it's do-able. (((Ginny)))
Thanks for the kind words. I had other plans for the next 6 months. I was even toying with an eyelid and lower eye surgery! LOL Hey, I need to look good for those hospital visits. Ha!
Now, it's back to wig shopping again. I don't tolerate Carbo very well. It was funny today when the nurse gave me every anti-nausea pill they had pre-typed scripts for, but she forgot the patch!
Doxil is also one of my cocktails and the nurse was adamant about staying away from heat and sunlight. I live in Florida. 'Glad it's approaching "Winter." My darling husband offered to have Thanksgiving catered and cook it all out by the pool to keep me away from the heat of the kitchen!Our hurricane equipment can do anything. (No, we are not high-rollers) LOL
'Hope you continue to do well. I think only those who are in this battle can understand.
Hugs, Ginny0 -
Well, Ginny - I guess I'm
Well, Ginny - I guess I'm right there with you. I'm actually on 'vacation' in the NC mountains, currently in a 'little' hospital with a stupid bowel obstruction! This started Sunday, the day our friends from Texas drove up to meet us for a fall week! My diet has changed from BBQ and yummy stuff to gingerale. I will meet with my onc/surg on Monday to determine the next step. CT shows thickening of small bowel, could be scar tissue or cell growth. My CA was up to 20 in Sept. after being 3.3 in June. Girlfriends - we will hold each other up and keep walking. Find the problem and fix it if we can and with a little faith that will be our Teal rock. I'm sorry this is going on with you, Linda, Tina...OMG, just when you think it's safe to go exploring. Yea, I'm feeling kind of low also. Love you gals - Ellen0 -
My thoughts are with youNCEllen said:Well, Ginny - I guess I'm
Well, Ginny - I guess I'm right there with you. I'm actually on 'vacation' in the NC mountains, currently in a 'little' hospital with a stupid bowel obstruction! This started Sunday, the day our friends from Texas drove up to meet us for a fall week! My diet has changed from BBQ and yummy stuff to gingerale. I will meet with my onc/surg on Monday to determine the next step. CT shows thickening of small bowel, could be scar tissue or cell growth. My CA was up to 20 in Sept. after being 3.3 in June. Girlfriends - we will hold each other up and keep walking. Find the problem and fix it if we can and with a little faith that will be our Teal rock. I'm sorry this is going on with you, Linda, Tina...OMG, just when you think it's safe to go exploring. Yea, I'm feeling kind of low also. Love you gals - Ellen
Gosh Ellen,
'Hope you get some relief. 'Have done the bowel obstruction thing, no fun. I had the surgery. Mine was scar tissue and they assured me it would come back again! How awful to be out of town, as well.
Hmmm-Teal Rock, like that. 'Wonder if my HOA would let me put one out front?
Take care and let us know how you're doing. Ginny0 -
Geez Louise!
I don't know if I am more sad or angry when I read what you are all going through. All of us have gone to hell and back and yet are expected to make more trips. I just had my last chemo on 9/16. Couldn't complete the last one because my body couldn't take it. For the last few days my stomach feels kind of weird. I am so scared something is going on. The last CA 125 I had on 10/08 was 7. I am going to wait a few more days before I call my doctor. Ignorance is bliss, or so I am telling myself.
Karen0 -
froggykikz said:Geez Louise!
I don't know if I am more sad or angry when I read what you are all going through. All of us have gone to hell and back and yet are expected to make more trips. I just had my last chemo on 9/16. Couldn't complete the last one because my body couldn't take it. For the last few days my stomach feels kind of weird. I am so scared something is going on. The last CA 125 I had on 10/08 was 7. I am going to wait a few more days before I call my doctor. Ignorance is bliss, or so I am telling myself.
Karen
This all grew so quickly within 3 months? That is very scary.... it almost makes you feel like you should go every month for a check up.
I will be praying for you
0 -
Froggy....my doctor says
Froggy....my doctor says 35-40% survive more than 5 years.
Also,you have to remember that OC is usually diagnosed at age 60 or later. Some of the women who make up these numbers are young and healthy, but some are 85 years old and frail, have heart problems, Diabetes, etc. The ones who die within the first 2 years fall primarily into that second group.
I know you were expecting this but that does not make it easier to swallow. I tell myself every time they draw blood that I will not be surprised if my number is elevated, but then I hold my breath when the nurse calls and says, "I have your lab results."
I don't know a lot of women in "real life" who have OC, but I know two women personally who have survived over 10 years. Both were IIIc at diagnosis and one has been in treatment more than she has been NED, but she is alive and kicking and her QOL is great. Then there are the long-term survivors I've met on the Internet. One of them was diagnosed IIIc almost 20 years ago, before Carbo and the other drugs they use now. Just think of the odds she beat.
Ovarian Cancer is relatively rare. Statistically, I shouldn't have gotten it in the first place - no family history; BRAC negative; multiple pregnancies, all in my 20's; nursed two of my children for at least a year. What can I say? Statistics define people, but not any one person.
I don't really buy into the notion that a "positive attitude" will cure Cancer, but I am stubborn enough to believe that as long as I'm breathing, I have a fighting chance. As do you, Froggy.
Big girl panties are over-rated. Go out and buy something red and sexy.
Carlene0 -
Dear Ginny,
I'm so sorry you have to go through this. And tears are necessary, along with the big girl pants. My doc in Seattle told me last year that he had a patient who went into remission after 3rd line chemo and 4th line chemo, and he hasn't seen the in 10 years! I keep encouraging myself with those words.
I had good results with the carbo/doxil together. I starte with only the doxil and when the carbo was added, my marker went way down. I hope it is a good combo for you.
Hugs and Prayers,
kathleen❥0 -
Hi Ginny
Sorry to hear that
Hi Ginny
Sorry to hear that you have to go back on chemo. Just curious to know if the cancer has just come back in your lymph nodes? I have enlarged lymph nodes (and a few other nodules) but my CA125 is in the normal range. Apparently when the lymph nodes are involved it is slow growing so we are just keeping an eye on mine at the moment. I know down the track I will have to go back on chemo but the longer I can hold off the better. My oncologist is not too concerned at the moment as it is slow growing.
Jenny0 -
Lymph nodes-back to JennyTasgirl said:Hi Ginny
Sorry to hear that
Hi Ginny
Sorry to hear that you have to go back on chemo. Just curious to know if the cancer has just come back in your lymph nodes? I have enlarged lymph nodes (and a few other nodules) but my CA125 is in the normal range. Apparently when the lymph nodes are involved it is slow growing so we are just keeping an eye on mine at the moment. I know down the track I will have to go back on chemo but the longer I can hold off the better. My oncologist is not too concerned at the moment as it is slow growing.
Jenny
Jenny,
As the Brits say, "You are spot on." It is in the lymph nodes. But I think there are so many different approaches depending on doctor opinion. It really puts the patient in the middle.
My CA125 is "only" 14, which is maybe "normal." Yet my retired Doc pegged my baseline at 5.
SO, I haven't been at 14 since way back when the cancer was very active.
He said that in Britain many Docs won't treat until you are symtomatic, whatever that is!
He seemed adamant about attacking this NOW, since my nodules are in inoperable places, one is near my heart. He said otherwise surgery or radiation would be another option.
I'm not sure that my NED was correct, which is kind of scary. My "final" CT was clear after maintenence. I think a PET would have told a different story. It did show up on the CT they did last week before the PET, but the nodules are in the CM range. not MM.(Forgot to get the report, not sure I want to!)
This disease is SO darn complicated. Then the Docs differ on approaches. I did maintenance, but now can't use taxol, since I just had it, but 'guess it didn't work anyway! LOL Or, maybe I would have baseballs by now, who really knows?
PS- He didn't mention slow growing.. Hmmm.
LOVE THESE BOARDS AND YOU PEOPLE-I AM SPONSORING A DISNEY PITY PARTY IN ORLANDO FOR ANYBODY INTERESTED Ginny0 -
Thanks CarleneHissy_Fitz said:Froggy....my doctor says
Froggy....my doctor says 35-40% survive more than 5 years.
Also,you have to remember that OC is usually diagnosed at age 60 or later. Some of the women who make up these numbers are young and healthy, but some are 85 years old and frail, have heart problems, Diabetes, etc. The ones who die within the first 2 years fall primarily into that second group.
I know you were expecting this but that does not make it easier to swallow. I tell myself every time they draw blood that I will not be surprised if my number is elevated, but then I hold my breath when the nurse calls and says, "I have your lab results."
I don't know a lot of women in "real life" who have OC, but I know two women personally who have survived over 10 years. Both were IIIc at diagnosis and one has been in treatment more than she has been NED, but she is alive and kicking and her QOL is great. Then there are the long-term survivors I've met on the Internet. One of them was diagnosed IIIc almost 20 years ago, before Carbo and the other drugs they use now. Just think of the odds she beat.
Ovarian Cancer is relatively rare. Statistically, I shouldn't have gotten it in the first place - no family history; BRAC negative; multiple pregnancies, all in my 20's; nursed two of my children for at least a year. What can I say? Statistics define people, but not any one person.
I don't really buy into the notion that a "positive attitude" will cure Cancer, but I am stubborn enough to believe that as long as I'm breathing, I have a fighting chance. As do you, Froggy.
Big girl panties are over-rated. Go out and buy something red and sexy.
Carlene
Thanks for the encouragement. Were you a cheerleader in High School? LOL I deem you the official cheerleader for this board, effective now! You always have the good stats.
Yeah, those red sexy panties will look great with my two red incisions, always did like monochromatic! Take care and prove maintenance works for some of us PLEASE
BTW-My new doc doesn't believe in it(same group) Let's get together guys!
Hugs, Froggy0 -
Hi Ginnyfroggy1 said:Lymph nodes-back to Jenny
Jenny,
As the Brits say, "You are spot on." It is in the lymph nodes. But I think there are so many different approaches depending on doctor opinion. It really puts the patient in the middle.
My CA125 is "only" 14, which is maybe "normal." Yet my retired Doc pegged my baseline at 5.
SO, I haven't been at 14 since way back when the cancer was very active.
He said that in Britain many Docs won't treat until you are symtomatic, whatever that is!
He seemed adamant about attacking this NOW, since my nodules are in inoperable places, one is near my heart. He said otherwise surgery or radiation would be another option.
I'm not sure that my NED was correct, which is kind of scary. My "final" CT was clear after maintenence. I think a PET would have told a different story. It did show up on the CT they did last week before the PET, but the nodules are in the CM range. not MM.(Forgot to get the report, not sure I want to!)
This disease is SO darn complicated. Then the Docs differ on approaches. I did maintenance, but now can't use taxol, since I just had it, but 'guess it didn't work anyway! LOL Or, maybe I would have baseballs by now, who really knows?
PS- He didn't mention slow growing.. Hmmm.
LOVE THESE BOARDS AND YOU PEOPLE-I AM SPONSORING A DISNEY PITY PARTY IN ORLANDO FOR ANYBODY INTERESTED Ginny
My CA125 at the
Hi Ginny
My CA125 at the lowest was only 12.7 after a high of 3800 so I thought the CA125 would be a good indication for me if there was a recurrence but no. It went to 22 in July and is now at 31 but I have been sick so that could affect the reading. We are doing another blood test and scan in January to see what is happening. Apparently mine are a bit too small to operate BUT the one in my groin feels big (as I can feel that one) as I would rather have them removed than go through chemo again. I wonder how big they have to be before they consider surgery. If yours are in inoperable places then maybe you do not have a choice but to go back on chemo.
Let us know how you go.
Jenny0 -
back to JennyTasgirl said:Hi Ginny
My CA125 at the
Hi Ginny
My CA125 at the lowest was only 12.7 after a high of 3800 so I thought the CA125 would be a good indication for me if there was a recurrence but no. It went to 22 in July and is now at 31 but I have been sick so that could affect the reading. We are doing another blood test and scan in January to see what is happening. Apparently mine are a bit too small to operate BUT the one in my groin feels big (as I can feel that one) as I would rather have them removed than go through chemo again. I wonder how big they have to be before they consider surgery. If yours are in inoperable places then maybe you do not have a choice but to go back on chemo.
Let us know how you go.
Jenny
Hi,
Yes, mine are in inoperable places. My Doc said the choice would have been either surgery, radiation or chemo. Alas, chemo is my only choice. Mine are right near vital organs. I should know all the details, but right now I choose not to know everything! LOL Ginny0 -
Bikinis in TEAL?Hissy_Fitz said:Froggy....my doctor says
Froggy....my doctor says 35-40% survive more than 5 years.
Also,you have to remember that OC is usually diagnosed at age 60 or later. Some of the women who make up these numbers are young and healthy, but some are 85 years old and frail, have heart problems, Diabetes, etc. The ones who die within the first 2 years fall primarily into that second group.
I know you were expecting this but that does not make it easier to swallow. I tell myself every time they draw blood that I will not be surprised if my number is elevated, but then I hold my breath when the nurse calls and says, "I have your lab results."
I don't know a lot of women in "real life" who have OC, but I know two women personally who have survived over 10 years. Both were IIIc at diagnosis and one has been in treatment more than she has been NED, but she is alive and kicking and her QOL is great. Then there are the long-term survivors I've met on the Internet. One of them was diagnosed IIIc almost 20 years ago, before Carbo and the other drugs they use now. Just think of the odds she beat.
Ovarian Cancer is relatively rare. Statistically, I shouldn't have gotten it in the first place - no family history; BRAC negative; multiple pregnancies, all in my 20's; nursed two of my children for at least a year. What can I say? Statistics define people, but not any one person.
I don't really buy into the notion that a "positive attitude" will cure Cancer, but I am stubborn enough to believe that as long as I'm breathing, I have a fighting chance. As do you, Froggy.
Big girl panties are over-rated. Go out and buy something red and sexy.
Carlene
I'm way past living in terror of those stats. I'm 4 1/2 years into fighting this beast and I was told that I had what...a 37% chance to make it to 5 years. I had chemo today and the gemzar/carbo cocktail is working! My counts dropped several more points and I'm thrilled. I have inoperable spots also and will consider maintainance chemo and or radiation if necessary cause I'm going to fight for all my sisters who weren't as "lucky". Here's to dancing on our fifth year anniversaries. Maybe with new drugs and more awareness we could change these statistics.
(((HUGS))) Maria0 -
Feel better, EllenNCEllen said:Well, Ginny - I guess I'm
Well, Ginny - I guess I'm right there with you. I'm actually on 'vacation' in the NC mountains, currently in a 'little' hospital with a stupid bowel obstruction! This started Sunday, the day our friends from Texas drove up to meet us for a fall week! My diet has changed from BBQ and yummy stuff to gingerale. I will meet with my onc/surg on Monday to determine the next step. CT shows thickening of small bowel, could be scar tissue or cell growth. My CA was up to 20 in Sept. after being 3.3 in June. Girlfriends - we will hold each other up and keep walking. Find the problem and fix it if we can and with a little faith that will be our Teal rock. I'm sorry this is going on with you, Linda, Tina...OMG, just when you think it's safe to go exploring. Yea, I'm feeling kind of low also. Love you gals - Ellen
I'm so sorry your trip has been derailed just when there was BBQ involved!
Love you too.... Maria0 -
Dear GinnyLisa13Q said:Dear Ginny
Sooo sorry to hear this news....I think recurrance is worse than the initial diagnosis...it's tough...It took me 3 months to deal with my mothers. BUT you will deal with it. Forget the stats. They really have gotten better and the treatments are better. Also, there are a number of GREAT trials going on as well, so the stats are improving especially at the centers where they are doing trials. The "good news" is Doxil is a great drug...you can take it forever and you don't have to have it with the carbo if carbo is truly that bad....I am sooo sorry though
I'm so sorry that you have to face this beast for a second round. I was angry, sad... ok, pi**ed when I realized I had to start again. I think you'll find that you will be better prepared this go round. We'll be there every step of the way.
(((HUGS))) Maria0 -
Hi Ginny! Sorry, your cancer
Hi Ginny! Sorry, your cancer back.I hope chimo will kill cancer in all spots. I had 5 spots light up by PET/CT scan in January 5,2010.They was not operable, after 3 session of jemzar/carbo in March all spots was gone. I did 8 session of this chimo, finished in June. My 3 month check up in October was fine, I am free of chimo for another 3 month. You can do the same. Good luck, with best wishes, Zina.0 -
You rock, Zina!zinaida said:Hi Ginny! Sorry, your cancer
Hi Ginny! Sorry, your cancer back.I hope chimo will kill cancer in all spots. I had 5 spots light up by PET/CT scan in January 5,2010.They was not operable, after 3 session of jemzar/carbo in March all spots was gone. I did 8 session of this chimo, finished in June. My 3 month check up in October was fine, I am free of chimo for another 3 month. You can do the same. Good luck, with best wishes, Zina.
What a great result. I'm so happy for you.
(((HUGS))) Maria0 -
Thanks, Maria! It is feelsMwee said:You rock, Zina!
What a great result. I'm so happy for you.
(((HUGS))) Maria
Thanks, Maria! It is feels so much better, when every one here knows what we go through and can help each other with support and good advise and with a shoulder, where every one can cry some times. Love you all, teal ladies. I love (((hugs)))! (((hugs))), Zina.0
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