CancerCompass message board discussion started by KristaJ on 2/1/2008 http://www.cancercompass.com/message-board/message/all,20565,0.htm Wed, 20 Aug 2008 00:00:00 GMT Wed, 20 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Is there anyone out there in complete remission with stage 4 ovarian cancer? Please respond. I am very discouraged. KristaJ Fri, 01 Feb 2008 00:00:00 GMT Yes. I have a very good friend who has been in remission for 22 years!!!!!!And, she knows about another woman with the same results. Someone always has to be the exception! So, keep hoping!!!!G.  Hawaii Sun, 03 Feb 2008 00:00:00 GMT Hi! Through the ovarian carcinosarcoma yahoo list, I know of at least one member who is a stage 4 and has been NED for the last year.  She has been fighting it for 3 years and her last surgery was to remove a node on one of her lungs.  But since then, she has been OK.  My mom is a stage 3C and she is NED since 10/07. You are not alone.  Hang in there and let's hope that you too can battle this back. Christiane in OR  Christiane Sun, 03 Feb 2008 00:00:00 GMT  On 2/1/2008 KristaJ wrote:Is there anyone out there in complete remission with stage 4 ovarian cancer? Please respond. I am very discouraged.KristaJ, I was not diagnosed with a stage 4 but I was diagnosed with Ovarian Cancer 3-C, which I felt might be just close enough.  I was diagnosed in 1991, and it's not 2008, 17 years of extra time and not too many side effects to deal with.  I took chemo (cytoxin and cisplatin) and also had radiation.  So don't give up, I think your mental attitude has so much to do with all of this.  (Whatever your mind believes, your body receives)  I believe in imagery and meditation along with fighting along with everything that the medical staff offers.  Good luck, fight like heck.Cindy  OvCaSurvivor91 Mon, 11 Feb 2008 00:00:00 GMT I meant to type its NOW 2008....duh OvCaSurvivor91 Mon, 11 Feb 2008 00:00:00 GMT  On 2/11/2008 OvCaSurvivor91 wrote: On 2/1/2008 KristaJ wrote:Is there anyone out there in complete remission with stage 4 ovarian cancer? Please respond. I am very discouraged.KristaJ, I was not diagnosed with a stage 4 but I was diagnosed with Ovarian Cancer 3-C, which I felt might be just close enough.  I was diagnosed in 1991, and it's not 2008, 17 years of extra time and not too many side effects to deal with.  I took chemo (cytoxin and cisplatin) and also had radiation.  So don't give up, I think your mental attitude has so much to do with all of this.  (Whatever your mind believes, your body receives)  I believe in imagery and meditation along with fighting along with everything that the medical staff offers.  Good luck, fight like heck.CindyHi Cindy, thank you for all the words of encouragement. To make matters worse, I just found out that after responding so well to my second line of treatment(Doxil) for 5 months and set to have my 6th; it decided to quit working. I start on Topotecan next week. I was so looking forward to having a break and whammo! I agree that your mind can do powerful things and I try to stay positive BUT as you well know while you're going through it and faced with only a few more chemo options it's hard to not worry. I do meditate and say affirmations and try to picture myself healthy; sometimes I do the things I do not only because I want to be well, but also I think for everyone elses (family and friends) peace of mind. There are moments that I feel like I'm fighting a  fight that I'm never going to win,almost like I'm trying to change what is supposed to happen .I'm not afraid to die, what I'm afraid of is finding out too late that there could have been something to save my life. Anyway, I won't torture you with anymore philosophical thoughts that I'm sure you've already dealt with. I almost feel selfish even talking about it because I know it brings up old memories that you would prefer to forget. So, on that note I will say Bye for now and hope to hear from you again. Thanks again for responding and allowing me to vent. Take care and my hope for you is a long and happy cancer free life! Love, KristaJ  KristaJ Tue, 12 Feb 2008 00:00:00 GMT Krista;It was wonderful to hear back from you.  Please, Please don't ever feel bad, or guilty, or any negative feelings about ANYTHING you share with me.  Child, if I had only had ONE person to talk with about what I was going through.  At the time in 1991, I was not on the internet and could not find even one person who was alive that had gone through any of my chemo's.  The people I made friends with at my doctors office, all "graduated" to Heaven before me, and it was a very discouraging time.  So I know exactly what you are talking about.  Where do you live?  I live in Alabama and I went to Southern GYN Oncology in Birmingham, with Dr. Larry Kilgore as my physician.  His mother had passed away 6 months before me with OvCa, and I am telling you he is a man on a mission to save everyone he can.  I was given less than a year to survive in 1991, so that Christmas I maxed out every Credit card I had, my family and kids had one heck of a Christmas....so don't do that...lol  'Cause here I am 17 years later, able to fuss about all the interest I had to pay...lolI don't look back at the time I fought cancer as bad, sad or anything negative, because personally after going through all that I had to go through some very positive changes were made in my life.  I am actually thankful for the experience (I know you think I am crazy) because I am not the same person coming out of it as I was when I went in.  You can write to me, you can vent to me, I am here for you...You know your body like no one else does, you make your own decisions about your treatment.  If I didn't learn anything else, I DID learn this:  PASSIVE PEOPLE DIE, AND AGRESSVE PEOPLE MAKE IT!  So be very agressive with your health care...its a fight for your life, and well worth fighting for.Blessings to you and your friends and family.  Do you have children?  At the time I had a 13 year old, and a 19 year old, and I am presently raising a 14 year old granddaughter.  Yikes!  Wish me luck there, she is special needs, and is a joy to my old heart.Hope to hear from you...Cindy OvCaSurvivor91 Tue, 12 Feb 2008 00:00:00 GMT  On 2/12/2008 OvCaSurvivor91 wrote:Krista;It was wonderful to hear back from you.  Please, Please don't ever feel bad, or guilty, or any negative feelings about ANYTHING you share with me.  Child, if I had only had ONE person to talk with about what I was going through.  At the time in 1991, I was not on the internet and could not find even one person who was alive that had gone through any of my chemo's.  The people I made friends with at my doctors office, all "graduated" to Heaven before me, and it was a very discouraging time.  So I know exactly what you are talking about.  Where do you live?  I live in Alabama and I went to Southern GYN Oncology in Birmingham, with Dr. Larry Kilgore as my physician.  His mother had passed away 6 months before me with OvCa, and I am telling you he is a man on a mission to save everyone he can.  I was given less than a year to survive in 1991, so that Christmas I maxed out every Credit card I had, my family and kids had one heck of a Christmas....so don't do that...lol  'Cause here I am 17 years later, able to fuss about all the interest I had to pay...lolI don't look back at the time I fought cancer as bad, sad or anything negative, because personally after going through all that I had to go through some very positive changes were made in my life.  I am actually thankful for the experience (I know you think I am crazy) because I am not the same person coming out of it as I was when I went in.  You can write to me, you can vent to me, I am here for you...You know your body like no one else does, you make your own decisions about your treatment.  If I didn't learn anything else, I DID learn this:  PASSIVE PEOPLE DIE, AND AGRESSVE PEOPLE MAKE IT!  So be very agressive with your health care...its a fight for your life, and well worth fighting for.Blessings to you and your friends and family.  Do you have children?  At the time I had a 13 year old, and a 19 year old, and I am presently raising a 14 year old granddaughter.  Yikes!  Wish me luck there, she is special s needs, and is a joy to my old heart.Hope to hear from you...CindyHi Cindy, I have 3 wonderful stepchildren that I love like no other. They are great kids and having a hard time with my illness. I don't know how much to tell them. Some people say to be completely honest and some say to not bring it up. I will say as a person who lost their mother when I was 4, no one really ever made it a point to talk about her when I was growing up, and that made me very angry. Now, as an adult, I want to know everything about her and can't get enough information. This is such a hard thing for a child to go through, I just wish there was a way to prevent it from affecting them for the rest of their lives. I too have had wonderful things happen to me through this horrible experience. Most of all, I know myself better than ever and am at complete peace in who I am as an individual. I truly am proud of the person that I have become which has taken a long time to figure out. I also finally realize that I am deserving of all that life has to offer. I've spent my whole life a pretty sad person and always trying to take care of everyone else, not realizing that I deserve the same happiness that I have tried to give everyone else(the 3 husbands I've had). More importantly, I am on a journey to self discovery and I now say that if you want to go on that journey with me, fine, otherwise have a nice life! My current husband#3, does not get anything that I'm going through, thus making it very hard to stay married. It's all about him and frankly I can't worry about that. That's been my problem all these years, is that I've put everyone else first and wasted so much time on people that have no intention of giving me the same. NOT ANYMORE!!!! Through all of this, even though my marriage is in trouble (he doesn't think so) I'm very happy in who I am as a person. I've also realized that I can't make anyone happy;I can contribute to their happiness but it has to be there to begin with. You've been very nice in listening to all of this and the days are counting down to my first Topotecan treatment, I'm a little nervous. The hardest part about cancer is that no one can tell you what is exactly going to happen and how long you have to live. That is my biggest frustration. Oh, by the way, I live in Indianapolis,In. Well, we just moved to a small town right outside INDY to be closer to my stepkids. Not somewhere I would have chosen to live but there I go again, making everybody else happy first. It's only about 20 minutes from Indianapolis and much easier to see the kids with all their activities. Much further from, it seems, everwhere I have to go on a daily basis but I agreed to it(like an idiot). Is your grandaughter living with you? Wow, that must be tiring. So, you have alot on your plate like me.Are you married? I'm sorry if you mentioned that already. I have horrible chemo brain and my short term memory is GONE. But I hope that your life is extremely fulfilling and you are doing what YOU want to do . Take care and write soon. Love, KristaJ KristaJ Tue, 12 Feb 2008 00:00:00 GMT  Krista,I am sorry to hear your marriage is in trouble.   I really hate to tell you this, but tact I have never been famous for, and truth seems to work much better for me, as I still have "chemo brain" and can't keep up with fibs anymore.     BUT so many marriages don't make it through Ovarian Cancer and its treatment.  My cancer doc even apologized to me about it and said it never ceases to amaze him at the behavior of the many men who are "others" to his patients, he said it embarasses him.  I ended up divorcing the man I was with when I went through my cancer treatment, he could not "handle" having a sick wife, and was so afraid that having "sexual relations" with someone undergoing chemo and radiation "there", and it was going to affect his "you know what" and make it glow in the dark or fall off or something he was just stupid about it.   I have seen it happen over and over as I have watched so many wonderful women fight this awful disease over the last 17 years.  So I encourage you to focus on you, this is a time to be unabashedly selfish about you and your care and health.  Go Girl!!   Yes I do have a husband, I was married 22 years to my present husband, and we got really "pissed off" one year and decided to go our separate ways, I then married "Mr. Glow in the dark" and that lasted 3 years, til I got well enough to get rid of him, and then my first husband was there to help me through the rest, and we remarried and now we have been married 40 years in total.  I am 61, you sound much younger than me, but I am a very young 61, and yes my 14 year old granddaughter lives with us, we have custody of her.  As I said she is special needs, emotionally and is doing so good right now.  Don't get too scared, do verbal affirmations daily, and believe in your medical team.  I will be praying hard for you, and will put you on my Church's prayer list if you don't mind.I am very proud of you for your fight and good attitude.  But, remember somedays you will be planning your funeral, and some days you will be planning next years vacation, those ups and downs are normal, so don't beat yourself up over it.  If anyone of the rest of us are surviving with this, you can too.Cindy OvCaSurvivor91 Tue, 12 Feb 2008 00:00:00 GMT Hi Cindy!I was reading your current conversation and you are an inspiration!  I have Ovarian Cancer IIIC - reccurrence - after a 3 year  mission.  My onocologist now tells me it will just keep coming back.  I mentioned to her that I'm NOW  trying many alternative methods to  get rid of what is left (I'm not "chemo break" right now as she puts it) but she rather scoffed at that.  But I have done so much research and truly feel that many combinations perhaps along with western medicine can help us alianate this disease!!  I'm juicing,  taking juice plus,  eating ginger, and ginger vitamins (ginger is now being known to make ovarian cancer cells commit suicide),  exercising, meditating and I feel most importantly thinking positive!   The power of positive thinking and reducing stress (as I'm researching) is a huge part of healing and staying well.  My husband is a wonderful man and has stuck beside me through both times of enduring this illness,  and I love him deeply,  but he does have a habit of constantly griping  (he says kiddingly) and belittling me and says I can't take a joke when I get upset,  but he loves me enough to try and change that,  although it's slow,  I'm letting him know it bothers me,  instead of stuffing it inside. If he weren't willing to change then I would probably leave him. You have to confront and/or change what stresses you!   My last CA125 was a 10 ! And I strongly feel a lot of the reason I am getting better is because I'm learning out to eat/think/and live differently !  I'm trying to do what makes me happy instead of ALWAYS what will make other people happy.  I'm telling you all out there to READ!  Research! Learn how to manage your life.   Imagine those tumors and cancer cells being destroyed ! Since I am religious, I imagine ANGELS gobbling up that cancer - my angels come from my immune system.  You have to TRULY believe that your cancer will be healed and it will be!  You have to WANT to be well,  really want it.  Believe it or not,  many people do not want to be well,  especially if it means changing their lives.   Imagine your body as being perfect !  Forgive those people who have hurt you,  and never hate.  Tell yourself,  that if people have hurt you,  you have become a better person because of it and have learned from it,  instead of harboring the pain.  Let go of bad memories and replace them with good thoughts.  Please be well and live well and happy!  Your life depends on it!Love, Deb   Deb S Thu, 14 Feb 2008 00:00:00 GMT I was diagnosed with stage 4 ovca in Aug of 2006. I finished treatment (surgery and chemo-6 cycles of carboplatin and taxol) in Jan of 2007 and was in remission for a year. I have talked to others who've had stage 4 and it has never returned. One woman had gone 10 years, another 19. Of course, I wish mine hadn't returned. I feel fabulous and have no aches or pains. I started doxil today and we'll see how that goes. I was quite down and surprised when I got the results that the c had returned, but I feel very optimistic now. I wish you the best. Holly HOLLY7 Thu, 28 Feb 2008 00:00:00 GMT Hi Holly, thanks for responding.Although I hate that there are so many of us on this site, I'm grateful to have a source of constant support and concern by so many wonderful women.It is truely one of the reasons I have the strength to continue to fight this horrible monster.I hope you do well with Doxil, I just finished 5 treatments,(CA125 started rising right before 6th).I didn't have many side effects, other than fatigue, and the most itchy, horrible rash that you could imagine.I was not "typical" in how mine appeared. As you probably know, the most common is the Hand and Foot Syndrome, which is the blistering on the bottom of feet and palms of hands. Make sure that who ever administers the chemo, gives you ice packs for when you are actually getting treatment. It will greatly reduce the severity, if you are affected at all.Let's hope not. Even though the rash has left me looking like I have Leprosy(sp), I would deal with it again, if I had to choose between that and vomitting and FEELING BAD for several days. I can do pain over that any day. I'm a big baby when it comes to the heaving.You'll do fine, I just remembered that you had a treatment yesterday, so I hope you're feeling ok.Take cool showers and don't wear tight clothing for awhile.Udder Balm is good to keep moisture in the skin too.Anyway, I won't keep you any longer, take care and post if you need or want to talk. Love, Krista KristaJ Sat, 01 Mar 2008 00:00:00 GMT Deb,You are an inspiration. I like the way you handle and deal with your health problems. Angels are wonderful but I did not imagine them taking away the cancer the way you did. I  had early stage ovarian cancer back in 1995, been in remission for 7 years, then recurrence in 2002, 2005, and 2007. I had chemo and radiation and at present having Doxil once every month. My oncologist wanted me to have eight treatments so the enlarged lymph nodes will shrink to the size he is comfortable with. I'm lucky to have minor side effects of nausea, not the hand and foot syndrome. My naturopathic gave me vit. B6+B6 complex to help prevent and it is working. My naturopathic doctor also advised me to go organic because the pesticides and hormones in food trigger cancer. So I am doing that now. I'm keeping a positive and cheery attitude as much as possible. My husband can sometimes annoy me but I don't let it bother much. It's not worth it. There's so much out there to enjoy and life is wonderful especially now that we're retired. My stress level has gone down. I have two grandchildren on the way that I'm looking forward to meeting plus I have a cute 2-year old grandson who we'd like to visit sometime in June when all my treatments are done. Continue to live beautifully and God bless you always with His loving care.Floroinda Flora Sun, 02 Mar 2008 00:00:00 GMT Hi Deb,What a wonderful inspiration you are, I love your letter - you go girl!I agree with all you say, but it is hard to be positive sometimes. I have stage 3c Ovarian Cancer. I had a full  hysterectomy and am starting chemo next Wed. I am rather fearful of the chemo, have heard so many horror stories, any advice ??? My ca125 was 2,790 before surgery and it is down to 490 now so I am  hoping the chemo takes care of the rest. It is defiantely a journey and one I am still trying to comprehend, it all started so quickly. A routine check with my gynacologis found the mass and it snowballed from there. I keep thinking it is a bad dream but unfortuantley it is now. My husband is wonderful, caring , patient and every so positive, I know he will be with me every step of the way.Thank you for your letter and I look forward to hearing from you,BernieOn 2/14/2008 Deb S wrote:Hi Cindy!I was reading your current conversation and you are an inspiration!  I have Ovarian Cancer IIIC - reccurrence - after a 3 year  mission.  My onocologist now tells me it will just keep coming back.  I mentioned to her that I'm NOW  trying many alternative methods to  get rid of what is left (I'm not "chemo break" right now as she puts it) but she rather scoffed at that.  But I have done so much research and truly feel that many combinations perhaps along with western medicine can help us alianate this disease!!  I'm juicing,  taking juice plus,  eating ginger, and ginger vitamins (ginger is now being known to make ovarian cancer cells commit suicide),  exercising, meditating and I feel most importantly thinking positive!   The power of positive thinking and reducing stress (as I'm researching) is a huge part of healing and staying well.  My husband is a wonderful man and has stuck beside me through both times of enduring this illness,  and I love him deeply,  but he does have a habit of constantly griping  (he says kiddingly) and belittling me and says I can't take a joke when I get upset,  but he loves me enough to try and change that,  although it's slow,  I'm letting him know it bothers me,  instead of stuffing it inside. If he weren't willing to change then I would probably leave him. You have to confront and/or change what stresses you!   My last CA125 was a 10 ! And I strongly feel a lot of the reason I am getting better is because I'm learning out to eat/think/and live differently !  I'm trying to do what makes me happy instead of ALWAYS what will make other people happy.  I'm telling you all out there to READ!  Research! Learn how to manage your life.   Imagine those tumors and cancer cells being destroyed ! Since I am religious, I imagine ANGELS gobbling up that cancer - my angels come from my immune system.  You have to TRULY believe that your cancer will be healed and it will be!  You have to WANT to be well,  really want it.  Believe it or not,  many people do not want to be well,  especially if it means changing their lives.   Imagine your body as being perfect !  Forgive those people who have hurt you,  and never hate.  Tell yourself,  that if people have hurt you,  you have become a better person because of it and have learned from it,  instead of harboring the pain.  Let go of bad memories and replace them with good thoughts.  Please be well and live well and happy!  Your life depends on it!Love, Deb    Ber58 Thu, 03 Jul 2008 00:00:00 GMT Please don't be discouraged.  Your positive attitude is the No. 1 predictor of a successful outcome.  Look at me, I've survived Stage 4 Hodgkin's Disease 4 times now.  :) Donald A. WilhelmThis Time's a Charm; Lessons of a Four-Time Cancer Survivor ThisTimesaCharm Thu, 03 Jul 2008 00:00:00 GMT Hello Bernie!I felt like I was looking at a mirror reflection of my own first experience!  God Bless you I know what you are going through.  I too was pretty terrified of chemo at first.  It wasn't as bad as I thought it would be.  But not easy either.  There are CD's out there - harp music & flute music - that are specifically made for relaxation during chemo.  They say that the more relaxed you are the less harsh the after affects are.  It seemed to work for me.   Also,  I've read many books that have helped me.  I'm hearing that most cancers are caused by stress !  Well more how we manage stress, and these books have helped me learn to manage my own stress better. I can recommend a few that have REALLY helped me.  You can get them on Amazon used - very cheap !  Bernie Seigel - "How to Heal Yourself  and Louise Hay - "You Can Heal Your Life"  .  Just getting into a better frame of mind can really help you get better.  I, with all my heart, believe this. I'm also drinking Essiac Tea - I get mine from a private dealer - which is much cheaper and better than the the health food stores (it is pretty expensive in the stores)  but this too is also known to help heal cancer !  Also green tea - I don't necessarily like green tea,  so I buy the extract and put it in my water.  That is supposedly like drinking 15 cups a day for one dropper full,  and I can barely taste it.I also take cancer fighting vitamins -  natural ones - Fish Oil,  Flax Oil Vitamins and Juice Plus and more.  Plus these help you feel better. But you might want to ask your doctor !  I wouldn't want to recommend anything that might interfere with your treatment.And I do the meditation and imagine my body well.  If you think about it, you get all stressed out and get a headache - that right there proves that stress affects your body - so why can't it affect in the opposite way? I feel  low stress and peace of mind can also heal your body and make it well.I consider the above like my medication - or like chemo.  I haven't had to take chemo since December and my counts have stayed down (CA125)  then I got very busy and slacked up  - well nearly quit because I thought I was ok,  and my count started to rise again.  It's only 29 though and I'm now back on my regiment,  and realize I will probably need to do this for life to stay well.I know it's hard to stay positive and if you can't all the time,  that is completely natural !  So don't feel guilty - ever - if you sometimes say "why is this happening to me?"  But try not to dwell on it !  Talking to other people who are experiencing the same thing helps !  I met several life long friends during chemo !  But you have to dwell on the positive things that cancer as brought you rather than the bad things!If you let it it,  cancer can be a life changing thing for the good.  It does help you appreciate life much more ! And see the world in a different way. You also find out how much people care about you !Ok,  I'll get off my soap box now !  I'm very passionate about this,  so I shout it whenever I can !I will be praying for you Bernie.  Let me know how you do !  You can always email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- You can do this !!!  Keep saying that " I CAN DO THIS "  ! Email me if you just need an ear !Love,Deb Deb S Thu, 03 Jul 2008 00:00:00 GMT HI Deb,Have not been on here for a while. Started my first chemo treatment last Wed. It was not as alarming as I thought it would be. I have had a few yucky days since but today am feeling better. The fatigue is terrible, I have had no energy at all for the 4 days after treatment but like I said today it does not seem so bad. Any hints on dealing with the side effects ?? Ber58 Ber58 Mon, 14 Jul 2008 00:00:00 GMT I have stage 3C not stage 4 but I will tell you what my doc told me. YOU ARE YOUR OWN STATISTIC AND DONT FORGET THAT.  I have read lots of stories of survival in stage 4 and you have to decid that you are going to be one of them. I know it is hard to be positive some days but they are the days that you lean on your support system, your friends and family and any suport group you can find out there. Another girl wrote in her blog," there is no expiration date stamped on the bottom of my feet" - also true. You get up and fight Krista, you are worth it and you can DO this, we are all here to help!BernieBer58On 2/1/2008 KristaJ wrote:Is there anyone out there in complete remission with stage 4 ovarian cancer? Please respond. I am very discouraged.  Ber58 Mon, 14 Jul 2008 00:00:00 GMT