Recurrance Strategies
Comments
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Have your wife come to this site and the women here will be glad to help her through this rough time. It sounds like fear has gripped her. We all get it and sometimes it is hard to talk to our friends and family. As much as you want to help only another cancer patient can really know what she is feeling. Good luck and I am sending prayers your way!
Jami0 -
God Bless you for being a wonderful husband, and being at the head of an extraordinarly strong support system! On the surface, one wouldn't pick up on any 'missing link'. But I agree that the 'coping' element can be so personal, so individual that it's difficult to tune into it. You are covering all the bases, from what I can see. And you have definitely come to the right place for more encouragement and especially, HOPE. It's important for your wife to talk to others who have been and ARE going through the same situation, in order to share thoughts, emotions, ideas for dealing with side affects, etc. While her current support system is tremendous and I'm sure very helpful, here she can really get into detail about her unpleasant treatment experiences, concerns about the future and more. Sometimes we hold back sharing those things with those close to us because they don't necessarily have the answers, and we don't want to burden them.
So many of us have been through this more than once, some more than twice, and for some it is ongoing. There are no easy answers, but just by letting it all out here I know she will find some comfort and assurance. The other nice feature of this website is that by clicking on the 'envelope' next to anyone's name she can contact individuals personally. Many of us have developed wonderful friendships by going beyond these pages and having communication via e-mail on a personal level.
I hope that your wife will visit us when she is ready. We'll be looking forward to hearing from her, adding to our already HUGE list of wonderful people here. Until then, my thoughts, hugs AND prayers are with all of you. Tell your wife to let go of the 'fear'. My favorite scripture, the one that got me through a great deal - surgeries, treatments, pain, side affects, etc. - is 'He has not given us a spirit of fear, but of POWER, LOVE and a SOUND MIND.
(((HUGS)))
Monika0 -
First let me say you are one great hubby!!!Second I think I would help console her with positive, educated words. First off the ca-125 is only a marker and can give alot of false positives..maybe she has an infection or something else going on within her. The fact that she feels good is so positive. When my ca-125 began to rise I did panic at first, but the CT scan did not show disease progression..so no chemo and I felt fine. By the time i started to have more pain was about the time it finally showed up on a scan...the funny part of that is that my ca-125 had gone down!!! How about getting her involved in this group or another? To talk to women who have gone through it all before, and can give her lots of different info and the needed support. Good luck, I know how scary this is to you both, lean on us...we'll be here ready to help in any way we can.---HUgz))..Joanne0
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No one can help like someone that is going thru or has gone thru the same situation. That is available at this site and I check daily. I try to do one day at a time, and stay out of fear, but there are days that the devil just puts it there and I have to fight him too. It is a comfort that the warriors here are praying and fighting with you and I with them in their difficulties. I am in ititial treatment and just pray for a time of low counts coming in the future, but I know that recurrance is a fact of life for most late stage ov. My husband, children, and church are supportive like yours, but this site meets a need that they don't. (((Hugs))) and prayers coming your way while I sit in the chemo chair today. Saundra from TX.0
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I agree with everyone here, they have given great advice. There really is something about talking to someone going through the same thing.
But there are also times that I shut down, and it really takes God to pull me out.
A friend of mine sent me Psalms 146:5 today (my nurse called to tell me my CA-125 had gone up to 146.5 and would be starting Gemzar tomorrow). Psalm 146:5 - Happy(Blessed) is he(she) that hath the God of Jacob for his(HER) help, whose hope is in the LORD his(HER) God!
Sounds like your wife has great support in you!
God Bless, Jan0 -
You have heard from many women that have given wonderful advice. I am just an echo what they have all said. I will be praying for you both. Thank you for sharing and I hope your wife comes here for support for the women here are awesome and so couragous. God be with you! Bonnie0
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Your outreach on behalf of your wife is very commendable, and I hope you will be able to bring her into our group to talk. I joined a live support group, but couldn't bring myself to do so until I had joined the CSN and spent some time in the chat room, asking questions about going to support group meetings. It was funny - I thought I was being pretty brave about things myself, but when I went to the first meeting, I broke down crying, and admitted I was scared. I now realize that when I'm there, I'm in the company of women who know where I'm coming from, and I find great comfort in their company.0
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I can barely see through the tears. Thank you all for your support and I will talk with my wife, who hates technology but may be willing to enter this discussion once I talk with her. We had a disturbing experience Friday at the hospital. Our GO had ordered a fluid sample be taken to test for cancer cells. Well, the techs felt it necessary to speculate on the volume and nature of the fluid taken in this test, and my wife was shaken to her bones by the experience. Fortunately our GO's office was right across the street and I took her there directly to talk with one of the support nurses there. We will know (I guess) this Wednesday whether there are cancer cells in the fluid sample and that, to my way of thinking, is better than the 3 weeks of not knowing we've been going through. Hope is a rare commodity and hard to sustain. I look in my wife's eyes and just want to jump in her head to help out. God Bless you all. We're people of humble and rational faith who appreciate those willing to help. I'm getting my wife together with her two best friends today and taking it a day at a time. I'll see if I can get her to take part in this. You are all the best.BonnieR said:You have heard from many women that have given wonderful advice. I am just an echo what they have all said. I will be praying for you both. Thank you for sharing and I hope your wife comes here for support for the women here are awesome and so couragous. God be with you! Bonnie
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Thanks again to all of you. I'm reading these over thoroughly and am going to talk with my wife today.mopar said:God Bless you for being a wonderful husband, and being at the head of an extraordinarly strong support system! On the surface, one wouldn't pick up on any 'missing link'. But I agree that the 'coping' element can be so personal, so individual that it's difficult to tune into it. You are covering all the bases, from what I can see. And you have definitely come to the right place for more encouragement and especially, HOPE. It's important for your wife to talk to others who have been and ARE going through the same situation, in order to share thoughts, emotions, ideas for dealing with side affects, etc. While her current support system is tremendous and I'm sure very helpful, here she can really get into detail about her unpleasant treatment experiences, concerns about the future and more. Sometimes we hold back sharing those things with those close to us because they don't necessarily have the answers, and we don't want to burden them.
So many of us have been through this more than once, some more than twice, and for some it is ongoing. There are no easy answers, but just by letting it all out here I know she will find some comfort and assurance. The other nice feature of this website is that by clicking on the 'envelope' next to anyone's name she can contact individuals personally. Many of us have developed wonderful friendships by going beyond these pages and having communication via e-mail on a personal level.
I hope that your wife will visit us when she is ready. We'll be looking forward to hearing from her, adding to our already HUGE list of wonderful people here. Until then, my thoughts, hugs AND prayers are with all of you. Tell your wife to let go of the 'fear'. My favorite scripture, the one that got me through a great deal - surgeries, treatments, pain, side affects, etc. - is 'He has not given us a spirit of fear, but of POWER, LOVE and a SOUND MIND.
(((HUGS)))
Monika0 -
I have to agree with all the brave fighting ladies I've met on this site. I just started posting recently, but had been reading and following their progress and praying for them for a long while. They helped me to remain focused and renewed my own vow to beat this thing back at all cost. I'm coming up on the ftve year mark, and I am as determined as ever to reach remission and stay healthy. When I had my 1st recurrance, I went into freak-out panic mode right in my oncs office, and she consoled me as much as possible. She put me on some meds to chill me out some and that helped out alot. My family, friends, and coworkers surrounded me with love and support and while I still lost it sometimes, they were very understanding and lent me shoulders to cry on. You seem like a very devoted husband and best friend to your wife...and an all around great guy. Some of the ladies here have been through so much...and have a wealth of information to share to any one in need. They have helped me more than they'll ever know, and I Thank them with all my heart. Please urge your wife to give a look and just read about some of what's going on. Thoughts and prayers coming your way,
Charlotte0 -
I'm glad you found this board and would like to add that there are many daughters and husbands as caregivers and friends of patients here too. You may find some things in common with them, and be able to share through the site's email system.
Also, your wife has made it a full year and that's a very good sign. It means she may well respond to the other therapies available, if, indeed her cancer is back. A recurrance is Not a death sentence. I have just celebrated 6 years since surgery and am taking a fifth drug for recurring oc. Some women get very long remissions from a second round of Carbo/Taxol, some don't even use that and go on to something less toxic. Nerve damage and hair loss does not occur with all of the therapies. (not to minimize the side effects of the other drugs, but the initial therapy is really a tough one.) For me, the second round was with carbo and taxotere, which caused less neuropathy. Then there was TAmoxifen and Doxil and Topotecan and now Gemzar. Other women here could add to this list and then there are combinations and clinical trials....while we wait for a cure!
Heartfelt hugs to you and your wife...hang in there, one day at a time, one minute if need be...you can do this.
Paula20 -
I think I spelled recurrence correctly this time? Embarrassing. Anyway, we fought through a bout of stressful appointments this week including a periocentesis where the techs felt it was justified to give their medical opinion on the fluid they withdrew from my wife's abdomen. Our doctor chewed them out today because my wife freaked out last Tuesday when the tech told her it was likely cancer for sure. But the tests showed no cancer in the fluid at a microscopic level. They're doing another test this Friday just in case the fluid is loculated higher up. My Linda is having fullness feelings in her upper abdomen and that's where they'll withdraw and test. This is like a puzzle. The CA125s are up but the doctor thinks it could be a false positive but no one seems to be in pursuit of other explanations for the fluid buildup? And it's difficult to get doctors to think around the block in some respects. They're focused on their protocol. As some of you suggested, we both probably could have used some meds earlier this week for our nerves...but the shred of hope at news that the fluids held no cancer was some encouragement. I think we have a long way to go but at least my wife was able to consider the discussion we held in the GOs office about Doxol. He doesn't want to go in for surgery but recommended a PET scan if the insurance company will approve it. Anyone had one of those? We're trying to find any "hidden" cancer that did not show on the CAT scan. Advice or perspectives along these lines of diagnostics would be helpful. My wife is nearing the point where I can get her online to talk to you all direct, at which time I'll start a different thread. Thanks to all...the online hugs do help! As do the prayers from so many people in our life.paula2 said:I'm glad you found this board and would like to add that there are many daughters and husbands as caregivers and friends of patients here too. You may find some things in common with them, and be able to share through the site's email system.
Also, your wife has made it a full year and that's a very good sign. It means she may well respond to the other therapies available, if, indeed her cancer is back. A recurrance is Not a death sentence. I have just celebrated 6 years since surgery and am taking a fifth drug for recurring oc. Some women get very long remissions from a second round of Carbo/Taxol, some don't even use that and go on to something less toxic. Nerve damage and hair loss does not occur with all of the therapies. (not to minimize the side effects of the other drugs, but the initial therapy is really a tough one.) For me, the second round was with carbo and taxotere, which caused less neuropathy. Then there was TAmoxifen and Doxil and Topotecan and now Gemzar. Other women here could add to this list and then there are combinations and clinical trials....while we wait for a cure!
Heartfelt hugs to you and your wife...hang in there, one day at a time, one minute if need be...you can do this.
Paula20 -
My heart breaks for you as I read your post this morning. I feel the anxiety and confusion that you and your wife have felt this week. I can honestly say that most of us have definitely been there.lindachris said:I think I spelled recurrence correctly this time? Embarrassing. Anyway, we fought through a bout of stressful appointments this week including a periocentesis where the techs felt it was justified to give their medical opinion on the fluid they withdrew from my wife's abdomen. Our doctor chewed them out today because my wife freaked out last Tuesday when the tech told her it was likely cancer for sure. But the tests showed no cancer in the fluid at a microscopic level. They're doing another test this Friday just in case the fluid is loculated higher up. My Linda is having fullness feelings in her upper abdomen and that's where they'll withdraw and test. This is like a puzzle. The CA125s are up but the doctor thinks it could be a false positive but no one seems to be in pursuit of other explanations for the fluid buildup? And it's difficult to get doctors to think around the block in some respects. They're focused on their protocol. As some of you suggested, we both probably could have used some meds earlier this week for our nerves...but the shred of hope at news that the fluids held no cancer was some encouragement. I think we have a long way to go but at least my wife was able to consider the discussion we held in the GOs office about Doxol. He doesn't want to go in for surgery but recommended a PET scan if the insurance company will approve it. Anyone had one of those? We're trying to find any "hidden" cancer that did not show on the CAT scan. Advice or perspectives along these lines of diagnostics would be helpful. My wife is nearing the point where I can get her online to talk to you all direct, at which time I'll start a different thread. Thanks to all...the online hugs do help! As do the prayers from so many people in our life.
On a more positive note, what wonderful news on the first fluid biopsy! We will hold positive thoughts for this next 'draw'. Yes, unfortunately the CA125 cannot be used alone as a diagnostic tool. Actually, neither can the PET scan. However, the PET scan is a very simple, painless test that can give some very important information about the body. The night before your wife will be instructed to eat and NOT eat certain things. The next day she will be given an injection of a carbhoydrate based dye, wait a bit, then lie down on the table and let the scanner do it's thing. Cancer cells thrive on carbohydrates to some extent. So by omitting them in your diet the day before, then injecting them the next day, any 'cancerous' areas will light up and will be readily seen.
I know we look to the technicians to give us some insight as the tests are being done or even completed. We just want to hear, 'no I didn't see anything', etc. In reality, they shouldn't say anything. It could give one false hope, or scare the living daylights out of someone, as with you and your wife.
My hugs and prayers continue. I will be waiting to see your next post with some good news!
God Bless.
Monika0 -
Thank you for perspective on the PET scan. We're waiting to find out whether it is approved by insurance. Tomorrow is a second fluid test. She's nervous of course. But if no cancer in that biopsy, one more thin layer of assurance. This is weird business as you all know. Everyone I know is advising drugs to manage emotions and stress, but we've made it through to a safe zone for now without it. Atavil. Xanax. I probably could have used some a couple days there, and perhaps in the near future if news turns out difficult. But for now, I personally relied on you all. So please accept my thanks. You are an inspiration and I hope to give back to someone else in need someday.mopar said:My heart breaks for you as I read your post this morning. I feel the anxiety and confusion that you and your wife have felt this week. I can honestly say that most of us have definitely been there.
On a more positive note, what wonderful news on the first fluid biopsy! We will hold positive thoughts for this next 'draw'. Yes, unfortunately the CA125 cannot be used alone as a diagnostic tool. Actually, neither can the PET scan. However, the PET scan is a very simple, painless test that can give some very important information about the body. The night before your wife will be instructed to eat and NOT eat certain things. The next day she will be given an injection of a carbhoydrate based dye, wait a bit, then lie down on the table and let the scanner do it's thing. Cancer cells thrive on carbohydrates to some extent. So by omitting them in your diet the day before, then injecting them the next day, any 'cancerous' areas will light up and will be readily seen.
I know we look to the technicians to give us some insight as the tests are being done or even completed. We just want to hear, 'no I didn't see anything', etc. In reality, they shouldn't say anything. It could give one false hope, or scare the living daylights out of someone, as with you and your wife.
My hugs and prayers continue. I will be waiting to see your next post with some good news!
God Bless.
Monika0 -
The third party representative for BCBS denied the PET scan. Surprise. But we go for a meeting with our GO Wednesday. My wife's abdominal swelling has grown uncomfortable and she's worried out of her brain. They took two liters of fluid out last Friday. Test results tomorrow I'm guessing. Last time no trace of cancer. Any advice on this abdominal swelling thing? What do doctors do to treat it until chemo (if necessary) and I'm wondering if this isn't something completely different like side effects from the botched intraperitoneal chemo #2 where they missed with the needle and it leaked. What a weird journey this is turning out to be.mopar said:My heart breaks for you as I read your post this morning. I feel the anxiety and confusion that you and your wife have felt this week. I can honestly say that most of us have definitely been there.
On a more positive note, what wonderful news on the first fluid biopsy! We will hold positive thoughts for this next 'draw'. Yes, unfortunately the CA125 cannot be used alone as a diagnostic tool. Actually, neither can the PET scan. However, the PET scan is a very simple, painless test that can give some very important information about the body. The night before your wife will be instructed to eat and NOT eat certain things. The next day she will be given an injection of a carbhoydrate based dye, wait a bit, then lie down on the table and let the scanner do it's thing. Cancer cells thrive on carbohydrates to some extent. So by omitting them in your diet the day before, then injecting them the next day, any 'cancerous' areas will light up and will be readily seen.
I know we look to the technicians to give us some insight as the tests are being done or even completed. We just want to hear, 'no I didn't see anything', etc. In reality, they shouldn't say anything. It could give one false hope, or scare the living daylights out of someone, as with you and your wife.
My hugs and prayers continue. I will be waiting to see your next post with some good news!
God Bless.
Monika0 -
Consider this kind of the end of this thread as my wife is headed for surgery October 1. We met with the GO today and the PET scan was not approved. I asked whether it would be worth paying for it ourselves and interestingly, received word that it is 70-80% effective. So, maybe BCBS knows something. He's going to poke in there and look around. If he sees cancer in the most suspect spots, he'll zip her back up and we'll go to chemoland. If no early sign, a bigger incision and more looking around. Odd, this game. God Bless you all for your counsel and empathy. My wife still has a big belly from fluid but she's less scared knowing there is a plan. She did make the doctor laugh when she said, "I just want to make sure I'm not going to pop." The whole room of interns, etc. got a laugh out of that. Humor in the face of the storm.BonnieR said:You have heard from many women that have given wonderful advice. I am just an echo what they have all said. I will be praying for you both. Thank you for sharing and I hope your wife comes here for support for the women here are awesome and so couragous. God be with you! Bonnie
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