No remission after all
I saw my oncologist this morning, and although he was pleased with the CT scan report, he said I'm not in remission, and the cancer is still active. He based this on my CA125 going up for the past three months. Obviously it was not what I wanted, or expected to hear and I was very disappointed.
He gave 3 choices, (1) to continue on Topo. for another cycle over the next three weeks, (2) to start Gemzar/Avastin next Monday, or (3) to take a break and repeat the CA on June 22nd and depending on the results, see where we go from there. He said taking a short break of a few weeks would not affect my cancer, and would let my body and bone marrow rest and recuperate a bit.
I opted for the break, and will have the CA repeated on June 22nd and meet with him on June 29th to go over the results and decide a course of treatment.
He had said in the past that he didn't expect me to have any remissions, and to be on chemo for the rest of my life.
That's where it stands now, it gives me a couple of weeks to get my body into fighting mode, and that's what I'll do.
I wish you all good health, and enjoy the Spring flowers!
Comments
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Nancyunknown said:This comment has been removed by the Moderator
Hi Nancy,
My stage is 4B grade 3, poorly differentiated cells, epithelial OVCA advanced state which had metastasized to my lymph nodes by the time it was diagnosed.
My only remission was after surgery and carbo/taxol and lasted 4 months,when my CA125 began steadily rising again. That's when I started Topotecan, 10 months ago.
He's a realist and he's basing his feelings on past patients with my situation, as well as his medical expertise.
I'll always hope to prove him wrong on this, but so far he's been spot on with everything.
Jane0 -
Rowing the same Boatjane65 said:Nancy
Hi Nancy,
My stage is 4B grade 3, poorly differentiated cells, epithelial OVCA advanced state which had metastasized to my lymph nodes by the time it was diagnosed.
My only remission was after surgery and carbo/taxol and lasted 4 months,when my CA125 began steadily rising again. That's when I started Topotecan, 10 months ago.
He's a realist and he's basing his feelings on past patients with my situation, as well as his medical expertise.
I'll always hope to prove him wrong on this, but so far he's been spot on with everything.
Jane
Dear Jane,
I love your "I'll always have Hope"... I always remain hopeful too but the reality is some of us never do see a remission. Like you I had 3-4 months after original surgery and chemo. Over the past 6 1/2 years I have managed to get to the point where I took up to a 3-month chemo break but that hasn't happened in years.
My Dr is a realist too, also in research so never gives up. He calls me the Miracle Patient. :-) Just when they are thinking nothing more will help ~ walla something does.
God's peace be with you in your journey my friend. Hugs ♥ Prayers Bonnie
Zephaniah 3:17 The LORD your God wins victory after victory and is always with you. He celebrates and sings because of you, and he will refresh your life with his love."0 -
Please read ladies so sorry Jane but they will find somethingBonnieR said:Rowing the same Boat
Dear Jane,
I love your "I'll always have Hope"... I always remain hopeful too but the reality is some of us never do see a remission. Like you I had 3-4 months after original surgery and chemo. Over the past 6 1/2 years I have managed to get to the point where I took up to a 3-month chemo break but that hasn't happened in years.
My Dr is a realist too, also in research so never gives up. He calls me the Miracle Patient. :-) Just when they are thinking nothing more will help ~ walla something does.
God's peace be with you in your journey my friend. Hugs ♥ Prayers Bonnie
Zephaniah 3:17 The LORD your God wins victory after victory and is always with you. He celebrates and sings because of you, and he will refresh your life with his love."
Ladies as soon as I get to IU and try this trial drug that is a pill that is suppose to stop the tumors. I will let you know before then but I will also let you know how I am responding and you can tell your oncologist. I have to take chemo TAxol and avastin and this pill. The bladder cancer patients have had great success. Hopefully I can message you in the next week or two to at least let you know exactly the spelling of it etc. Wish me luck and maybe just maybe it will help control cancer. I know everyone cant take those chemos but in others maybe they would use another chemo someone can tolerate with the pill. Its a the chemo of course kills the cancer then the pill which is not chemo keeps it from coming back. Its different then Tamoxafren and it is a trial but as I said it has worked on Bladder cancer. Wish and Pray us all luck. Will contact all soon.
Prayers and HUgs
Sandy0 -
Sorry
Hi Jane, so sorry that your not in remission. I want you to know that I'm praying for you.
May your break last long and your body starts to heal from so many months on chemo.
Your a true "Teal Warrior" and we will keep on fighting.
Hugs and Love, Terry0 -
Keep on trying
Enjoy your break from chemo and will your body to recover. We all will be praying for the right choice in the next round of chemo. Gemzar and Avastin may be the wonder drugs for your cells. We never know until we try because we are so different. Think positively and never give up!! (((HUGS and PRAYERS))) Saundra0 -
Strength
Jane, I hope that, if you have it, the Avastin will do a world of good for you. It hasn't been approved for OVCA for very long, but I've heard very good things about it.
I will keep you in my prayers, also.
Sue0 -
I AM ALSO THERE
Hi JaneI was diagnoised with stage 4 ovarian cancer in August 2006. Started chemo Taxol/Carbo in Sept 2006, had surgery Nov 2006. AT the time my GYN/ONC said he got as much of the cancer he could get safely. He told me then it would come back and I would never be in complete remmission. I had three more chemo treatment after. My CA125 was down and CT looked good, was in temp remmission for six months. Started chemo again Nov 2007---same thing. Chemo Nov 2008. Now its different finished chemo April 6, CT showed one little tumor that had not gone down so I started Chemo June 1, with new drug Doxil. I also took a break because I could feel that my body needed to get the strength back. My ONc and GYN/ONC said it did not make a difference.
I feel you go by what you know about your own body. And mentally and physically is how we all are going to fight this cancer. You have great spirt and keep on fighting. We will win.
Keep up hope and faith.
hugs!!!!!!!!!!!!!!!!!!! Dinora0 -
Dinoraarbor3 said:I AM ALSO THERE
Hi JaneI was diagnoised with stage 4 ovarian cancer in August 2006. Started chemo Taxol/Carbo in Sept 2006, had surgery Nov 2006. AT the time my GYN/ONC said he got as much of the cancer he could get safely. He told me then it would come back and I would never be in complete remmission. I had three more chemo treatment after. My CA125 was down and CT looked good, was in temp remmission for six months. Started chemo again Nov 2007---same thing. Chemo Nov 2008. Now its different finished chemo April 6, CT showed one little tumor that had not gone down so I started Chemo June 1, with new drug Doxil. I also took a break because I could feel that my body needed to get the strength back. My ONc and GYN/ONC said it did not make a difference.
I feel you go by what you know about your own body. And mentally and physically is how we all are going to fight this cancer. You have great spirt and keep on fighting. We will win.
Keep up hope and faith.
hugs!!!!!!!!!!!!!!!!!!! Dinora
Hi Dinora,
You've had rough time over the past few years, I hope you DO have a remission, even a short break, and good health in the future.
Stay positive and strong to keep fighting this beast.
Jane0 -
hopejane65 said:Dinora
Hi Dinora,
You've had rough time over the past few years, I hope you DO have a remission, even a short break, and good health in the future.
Stay positive and strong to keep fighting this beast.
Jane
I'm new to the board and this is the first thread I encountered. Jane and Green -- good luck on the treatments. But I especially want to send out my sympathies and good thoughts to both of you. I'm awaiting my ONC's pronouncement of remission from Stage 4 ovarian cancer metastecized to my chest cavity. I don't want to think remission yet as there are still some persistent tumors in my ingroinal area, ironically, around the scar where my surgeon took out a tissue to biopsy for the cancer diagonis. I'm due for one more carbo-taxol session at least in the hopes of getting rid of the pesky last tumors. BUT, I'm not exhaling yet. Thought I'm rooting for all of us. Keep up the fight and certainly the hope.
all my best,
-c0 -
Cambientbeats said:hope
I'm new to the board and this is the first thread I encountered. Jane and Green -- good luck on the treatments. But I especially want to send out my sympathies and good thoughts to both of you. I'm awaiting my ONC's pronouncement of remission from Stage 4 ovarian cancer metastecized to my chest cavity. I don't want to think remission yet as there are still some persistent tumors in my ingroinal area, ironically, around the scar where my surgeon took out a tissue to biopsy for the cancer diagonis. I'm due for one more carbo-taxol session at least in the hopes of getting rid of the pesky last tumors. BUT, I'm not exhaling yet. Thought I'm rooting for all of us. Keep up the fight and certainly the hope.
all my best,
-c
Hi C,
Welcome to the board, I'm sure you never expected to be here, none of us did but you'll find a wonderful group of knowledgeable, caring women here.
How is your CA125 and has it gone down on carbo/taxol?
How long ago was your diagnosis, and surgery?
I agree with you not to automatically expect a remission, especially since your cancer has metastasized, but be hopeful, that would be such wonderful news for you!
I'm staged 4B with metastasized ovca to my lymph nodes.
Good luck and keep us updated on what the doctor says. We'll keep rooting for you, too.
Jane0 -
Hi Janejane65 said:C
Hi C,
Welcome to the board, I'm sure you never expected to be here, none of us did but you'll find a wonderful group of knowledgeable, caring women here.
How is your CA125 and has it gone down on carbo/taxol?
How long ago was your diagnosis, and surgery?
I agree with you not to automatically expect a remission, especially since your cancer has metastasized, but be hopeful, that would be such wonderful news for you!
I'm staged 4B with metastasized ovca to my lymph nodes.
Good luck and keep us updated on what the doctor says. We'll keep rooting for you, too.
Jane
Thanks for the kind note of welcome. I've stayed away for bit because I didn't quite know how to "wear" this cancer, so I wanted to go through it privately. But, of late, I've found that no one else can understand what it's like other than those who are going through the same thing or similar. Even though I have strong support from family, sometimes they look at me like an alien when I get chemo brain or when my pre-chemo blues happen. So, I'm glad to finally join this community. Thank goodness! But I'm glad not only for that but also to be able to offer my ear and heart to all who need it here. I want to give back. I've been treated very well by my oncology team (let's not talk about the insurance company though).
Anyway, to answer your question, I was diagnosed Stage4 Ovarian metastecized to chest cavity (mostly on my left side) on March 11. It's been a whirlwind, what with 2 trips to the ER for blood clots (apparently caused by the cancer, unbeknownst to me) and a slew of tests, leading to the diagnosis. So, in addition, I"m also a Coumadin patient to prevent the blood clots from getting to my heart or brain (it's already gotten to my lungs, but that one's gone). I'm on a carbo-taxol regimen and just completed my 5th session. My first CA125 indicated a score of 6000! After 5 session's I'm pleased to say that it's at 52! My ONC took another one during my 5th session and he told me that together with the PET scan reading (one tiny group of pesky tumors on my left ingroinal area where they extracted the biopsy), if the CA125 yields a score of 10, then my 6th chemo session would be my last and I'll be in remission BUT on very close watch. Anyway, it's been a quick ride, but somehow I don't trust that it's been this quick. I'm waiting for the other shoe to drop.
Meantime, I'm here to listen, lend support and dialogue with all you wonderful folk!
best,
c0 -
Cambientbeats said:Hi Jane
Thanks for the kind note of welcome. I've stayed away for bit because I didn't quite know how to "wear" this cancer, so I wanted to go through it privately. But, of late, I've found that no one else can understand what it's like other than those who are going through the same thing or similar. Even though I have strong support from family, sometimes they look at me like an alien when I get chemo brain or when my pre-chemo blues happen. So, I'm glad to finally join this community. Thank goodness! But I'm glad not only for that but also to be able to offer my ear and heart to all who need it here. I want to give back. I've been treated very well by my oncology team (let's not talk about the insurance company though).
Anyway, to answer your question, I was diagnosed Stage4 Ovarian metastecized to chest cavity (mostly on my left side) on March 11. It's been a whirlwind, what with 2 trips to the ER for blood clots (apparently caused by the cancer, unbeknownst to me) and a slew of tests, leading to the diagnosis. So, in addition, I"m also a Coumadin patient to prevent the blood clots from getting to my heart or brain (it's already gotten to my lungs, but that one's gone). I'm on a carbo-taxol regimen and just completed my 5th session. My first CA125 indicated a score of 6000! After 5 session's I'm pleased to say that it's at 52! My ONC took another one during my 5th session and he told me that together with the PET scan reading (one tiny group of pesky tumors on my left ingroinal area where they extracted the biopsy), if the CA125 yields a score of 10, then my 6th chemo session would be my last and I'll be in remission BUT on very close watch. Anyway, it's been a quick ride, but somehow I don't trust that it's been this quick. I'm waiting for the other shoe to drop.
Meantime, I'm here to listen, lend support and dialogue with all you wonderful folk!
best,
c
Hi C, I understand what you're saying, and I agree that it's hard for anyone not dealing with this hell, to be able to connect the way other OVCA women can. We can talk to each other about anything, even things we'd be hesitant to discuss with others.
Just wait until you start getting the "Gee, for someone with cancer, you look good!" You just stare at them and try not to reply with, "what are we supposed to look like? emaciated and frail?"
Kind of like when I went for an eye exam and told the tech that I'm blind in one eye, and she said I should cover the good eye, and tell her what I see on the chart. I'm afraid my frustration level was such, that I did yell at her, "I'm blind in that eye, I don't see anything!"
Anyhow, your first CA was 6000, I never heard of it being that high, wow, but the huge drop was wonderful. That carbo/taxol really kicks butt
Don't wait for the other shoe to drop,hopefully it never will, just be happy if you do hear the word remission, then do a cartwheel!
Feel good,
Jane0 -
Thanks, Jane!jane65 said:C
Hi C, I understand what you're saying, and I agree that it's hard for anyone not dealing with this hell, to be able to connect the way other OVCA women can. We can talk to each other about anything, even things we'd be hesitant to discuss with others.
Just wait until you start getting the "Gee, for someone with cancer, you look good!" You just stare at them and try not to reply with, "what are we supposed to look like? emaciated and frail?"
Kind of like when I went for an eye exam and told the tech that I'm blind in one eye, and she said I should cover the good eye, and tell her what I see on the chart. I'm afraid my frustration level was such, that I did yell at her, "I'm blind in that eye, I don't see anything!"
Anyhow, your first CA was 6000, I never heard of it being that high, wow, but the huge drop was wonderful. That carbo/taxol really kicks butt
Don't wait for the other shoe to drop,hopefully it never will, just be happy if you do hear the word remission, then do a cartwheel!
Feel good,
Jane
I feel coming here is one of the best decisions I've made lately. I hope to be of help to others here as well. Although I'm pretty new to cancer, I do have big ears and wide shoulders for listening.
best,
c0 -
Good attitudeambientbeats said:Thanks, Jane!
I feel coming here is one of the best decisions I've made lately. I hope to be of help to others here as well. Although I'm pretty new to cancer, I do have big ears and wide shoulders for listening.
best,
c
Just keep that great attitude and keep coming and sharing. lt takes one to know one is my motto. Lots of things to learn on this site and lots of help too. I'm Stage IV with mets to liver. Saundra0 -
No remission for me too
I survived one year from Stage 4 Ovarian, now it spread to lymph nodes under arm. I'm waiting for CT Scan results. I guess I knew it would come back just wasn't ready. I'm still trying to heal from the massive surgery and chemo...Gemzar and Avastin are mentioned thruout comments. Did you get good results? Any other suggestions?
I am meeting with the docs Wed. I'm mentally trying to get myself back "in the ring" to fight. THe nice weather helps keep a positive attitude.
Finally, anyone else have problems with small veins and IV's? It took 5 hits before they could get the IV in yesterday. I had lots of problems with that before, my veins haven't come back yet. A nurse suggested Gatorade before lab draws and treatment - any thoughts???
Good luck everyone.0 -
My veins are shot, too, Linn.Linn1 said:No remission for me too
I survived one year from Stage 4 Ovarian, now it spread to lymph nodes under arm. I'm waiting for CT Scan results. I guess I knew it would come back just wasn't ready. I'm still trying to heal from the massive surgery and chemo...Gemzar and Avastin are mentioned thruout comments. Did you get good results? Any other suggestions?
I am meeting with the docs Wed. I'm mentally trying to get myself back "in the ring" to fight. THe nice weather helps keep a positive attitude.
Finally, anyone else have problems with small veins and IV's? It took 5 hits before they could get the IV in yesterday. I had lots of problems with that before, my veins haven't come back yet. A nurse suggested Gatorade before lab draws and treatment - any thoughts???
Good luck everyone.
Usually the techs try a couple of times to get an IV into me, then they call in the oncology nurse who takes a whack at it, then they call in the hospital's "IV team". This specialized team responds to calls from all over the hospital and specializes in getting IVs into tiny or compromised veins. (My veins have 'valve' problems and lots of scar tissue from chemo.) One of my DIL's friends was an RN that worked exclusively with tiny preemie babies with health complications at birth. When the emotional toll got to be too much for her, she took her skill at getting needles into tiny baby veins and joined thje hospital's IV Team. 5 sticks is too many; I think 3 tries is the max before they call in the IV Team where I go for treatment. ((((Linn)))) I'll have to try the Gatorade thing. I do make sure I'm well hydrated and they always wrap my arms with hot towels to try and plump up my veins before trying to stick me.0 -
Linn1Linn1 said:No remission for me too
I survived one year from Stage 4 Ovarian, now it spread to lymph nodes under arm. I'm waiting for CT Scan results. I guess I knew it would come back just wasn't ready. I'm still trying to heal from the massive surgery and chemo...Gemzar and Avastin are mentioned thruout comments. Did you get good results? Any other suggestions?
I am meeting with the docs Wed. I'm mentally trying to get myself back "in the ring" to fight. THe nice weather helps keep a positive attitude.
Finally, anyone else have problems with small veins and IV's? It took 5 hits before they could get the IV in yesterday. I had lots of problems with that before, my veins haven't come back yet. A nurse suggested Gatorade before lab draws and treatment - any thoughts???
Good luck everyone.
Hi Linn,
I'm also stage 4 with mets to my lymph nodes, so I know what you're going through, and we're never ready when this disease comes back. Please let me know what the CT scan shows.
I'll be having my CA125 drawn on June 22nd, and meet with my oncologist on June 28th to go over the results and set up a plan of action.
He did say that the Topotecan has stopped working and we have to move on to Gemzar/Avastin next.
Regarding your veins, I was told years ago to drink lots of water before they have to stick me to hydrate and plump up the veins, I hope that helps you.
Good luck with the CT results.
Jane0 -
Me too!!Linn1 said:No remission for me too
I survived one year from Stage 4 Ovarian, now it spread to lymph nodes under arm. I'm waiting for CT Scan results. I guess I knew it would come back just wasn't ready. I'm still trying to heal from the massive surgery and chemo...Gemzar and Avastin are mentioned thruout comments. Did you get good results? Any other suggestions?
I am meeting with the docs Wed. I'm mentally trying to get myself back "in the ring" to fight. THe nice weather helps keep a positive attitude.
Finally, anyone else have problems with small veins and IV's? It took 5 hits before they could get the IV in yesterday. I had lots of problems with that before, my veins haven't come back yet. A nurse suggested Gatorade before lab draws and treatment - any thoughts???
Good luck everyone.
I have small veins too and when they draw blood I demand they use a "butterfly" needle which is very small. That usually gets in the first try. If they use the usual large needle, I usually get stuck numerous times. I have been very demanding to prevent that!!! I know my left arm is better, I know where the vein is and I know about the butterfly. If I am dehydrated then it is harder to hit. I have to fast before getting a CT scan and they can't use a butterfly to inject the dye so that is always a hard day for me. The wrist or hand is better than the crook of the elbow. Saundra0 -
I like my portsaundra said:Me too!!
I have small veins too and when they draw blood I demand they use a "butterfly" needle which is very small. That usually gets in the first try. If they use the usual large needle, I usually get stuck numerous times. I have been very demanding to prevent that!!! I know my left arm is better, I know where the vein is and I know about the butterfly. If I am dehydrated then it is harder to hit. I have to fast before getting a CT scan and they can't use a butterfly to inject the dye so that is always a hard day for me. The wrist or hand is better than the crook of the elbow. Saundra
I had all kinds of problems so second time chemo I got a port I have had it 6 years with no problems. They clean it out every 8 weeks unless on chemo then every time. Had a good surgeon and only took a short time to put in. It also helps if they use a very warm rice pack on veins if you dont want a port. Mine just kept rolling and swelling and I said put the port in.
Prayers and Hugs
Sandy0
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