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Survivor stories needed
Hi,
I decided to repost this with a different title. With another precious woman succumbing to this awful disease, I thought that we all need to read about those who have been victorious against this disease. So I am asking those who have been in remission for 5 years or more tell us your story. Please include stage of your cancer and a little about your journey. I know many of survivors may not go to this website but if you know of a survivor please tell her story for her or ask her to post on this forum. I am stage IV and am determined to be a survivor. I need to hear from those who have been victorious...I need to hear there is hope. My heart breaks that another woman has died from this disease. I think some good news would do all of us a world of good. Julie
I decided to repost this with a different title. With another precious woman succumbing to this awful disease, I thought that we all need to read about those who have been victorious against this disease. So I am asking those who have been in remission for 5 years or more tell us your story. Please include stage of your cancer and a little about your journey. I know many of survivors may not go to this website but if you know of a survivor please tell her story for her or ask her to post on this forum. I am stage IV and am determined to be a survivor. I need to hear from those who have been victorious...I need to hear there is hope. My heart breaks that another woman has died from this disease. I think some good news would do all of us a world of good. Julie
I am a 39 year old Stage IIIc Ovarian Cancer survivor and am fighting it with all my might. I was diagnosed with this dreadful disease on Nov. 15th, 2002. What a nightmare that was to wake up to. I was only going in for a routine surgery to remove a cyst on my right ovary. While I was slowly awaking from that surgery, I kept hearing nurses and doctors saying, "it's Ovarian Cancer stage 3". I kept thinking, "gee, I hope they aren't talking about me." I would go to sleep and wake up, hoping that it was all just a bad dream.
When I finally did wake up, I saw this bright light in my face and then as my eyes focused slowly on my finance; he was standing right over my bed smiling at me gently holding the engagement ring that he had given to me when he had first proposed to me nearly six months before. The ring was placed neatly in the beautiful wooden box that it came in and it was open so that I could see it sparkling in the light. He just told me that he didn't care that I would never bare his children and that he loved me more than anything. It was as if he already knew that he was in for the fight of his life. Just hearing those words made me feel better than ever about the dire situation; it warmed my heart.
Instead of focusing on this horrible, horrible situation; I got to plan my very special wedding. My husband and I had originally planned to get married in April, of 2003, but that soon changed. We were married on December 3rd, 2002 just 2 days before my very 1st chemo treatment of Taxol & Carboplatinum and just 9 days after being released from the hospital. We felt the need to be strong together so that we could beat this terrible disease together, hand in hand. What a roller coaster ride that was and it still kinda is.
We are what soul mates are often consisted of; parallel similarities in how we both grew up and the amount of fun we always seem to have together. We have gone through a lot in those nearly 6 years of marriage. We went through 4 more major surgeries after that one, a few handfuls of near death experiences, many, many trips to the emergency room, and also many trips to Tahoe for some nice deep powder, trips to the beach, concerts, and we even bought a home together.
The Curse did return in April of 2006. I had started back on Chemo in August of 2006 and I was told that I will remain on chemo indefinitely (for the rest of my life or as long as my body can take it). I was very lucky to be on new drug called Avastin which is made by Genentech. It didn't make my hair fall out while it deprived the tumors of much need blood supply. In May 2007 I was taken off the drug due to some internal bleeding and painful bowel blockages.
In August 2008 (more Avastin and a pill called Etoposide) with heavy duty side effects; nausea, some hair loss, cramping in the abdominal area, and metal taste in my mouth. I took 3 and half months off of work and just focused on healing. I was able to donate my long hair to "Locks of Love" back in May 2008 (all 16"). I'm still fighting!
I had my 5th major Abdominal Surgery on March 15th, 2009. I did have to wear a semi-permanent nephostomy bag and in June of this year; they were able to internalize to a stint in my kidney and this will have to be replaced every 6 months. I am prone to very serious and even deadly infections where sometimes I have to be hospitalized. I had my 6th major abdominal surgery on July 27th, 2009 and have been hospitalized a few times since then. In August I was on Topotecan for only 5 treatments and then I had a serious infection where I nearly died; my doctor has even advised me recently that I really do need to go on Hospice care and prepare to die in 6 months. I will need to get all of my affairs in order; but I'm pretty stubborn and can't exactly accept that for my reality. I'm going to keep on fighting. My war is not over yet! Please feel free to check out my blog http://shoppingkharma.blogspot.com
My mom was cancer free for 6 years, did one chemo and changed her diet and lifetyle radically becausen of it. She got it again recently (probable reasons multitude of drugs due to surgery and bad mindset due to bad events and heinous people hurting her) , had a "spontanous remission" after it had reappeared and chemo was broken off, and had minor surgery again now. I've put down her diet and lifestyle, supplements, state of mind somewhere on the site.
In essence, we laugh a lot, ( as ever) take charge of the disease rather than the other way round, stay on top of medical news and alternative treatment, are not averse to spiritual approaches to illnesss (never were--curing wartz by going to the local healer is quite common here abouts, for example) and the most important thing is I am there for mom 24 hours no matter where in the world I am, she knows I will drop everything and take care of things and we know this world isn't the complete end of things which helps to keep things in perspective. We also know bad, even horrible things you don't understand now, have a reason.
Other than the initial shock we have never seen the disease aka "everybody has some kind of cancer in their body" as the big disaster, especially because we know much, much worse other than having treatment in a clean, modern hospital with sedatives.(the events which undeniably led to her cancer in the first place)
I will tell you what my no-nonsense co-worker told me when I wailed out to her the day of the diagnosis: "You mother doesn't have to die because of this, nonsense!" And then she gave me the guidelines to how she got rid of her own recurrent cancer naturally.
Currently we are doing intranvenous Vitamin C therapy which popped up in a press release while Mom did chemo and which of course made us veery confident that "there is alway another way, if this isn't working out"
Thank you for posting this question. It helped us greatly to know survivors, to know there is a way to live with this.
Don't forget your sense of humor is my main advice! They call it "tumor humor" I think. It#s an immunity enhancer without sideeffects other than hic-ips.
In essence, we laugh a lot, ( as ever) take charge of the disease rather than the other way round, stay on top of medical news and alternative treatment, are not averse to spiritual approaches to illnesss (never were--curing wartz by going to the local healer is quite common here abouts, for example) and the most important thing is I am there for mom 24 hours no matter where in the world I am, she knows I will drop everything and take care of things and we know this world isn't the complete end of things which helps to keep things in perspective. We also know bad, even horrible things you don't understand now, have a reason.
Other than the initial shock we have never seen the disease aka "everybody has some kind of cancer in their body" as the big disaster, especially because we know much, much worse other than having treatment in a clean, modern hospital with sedatives.(the events which undeniably led to her cancer in the first place)
I will tell you what my no-nonsense co-worker told me when I wailed out to her the day of the diagnosis: "You mother doesn't have to die because of this, nonsense!" And then she gave me the guidelines to how she got rid of her own recurrent cancer naturally.
Currently we are doing intranvenous Vitamin C therapy which popped up in a press release while Mom did chemo and which of course made us veery confident that "there is alway another way, if this isn't working out"
Thank you for posting this question. It helped us greatly to know survivors, to know there is a way to live with this.
Don't forget your sense of humor is my main advice! They call it "tumor humor" I think. It#s an immunity enhancer without sideeffects other than hic-ips.
I haven't been in remission for five years but after 8 years I am still here and consider I am in no danger of losing this battle soon.
I was diagnosed with stage 3C in December 2000 at the age of 39. The usual taxol and carboplatin and I had no sign of cancer until February 2005 when with a normal CA125 (had been elevated prior to original surgery) a biopsy confirmed that I had visible tumors again. Was referred again for surgery and (I am still angry about this) they opened me up, decided I was terminal and closed me up without even biopsying what they saw. Various chemos which made no difference followed until an oral dose of Etoposide had some effect. Apart from that I have had some radiation treatment (and lots of arguments with various so called speciallists!) To date it is all contained in my pelvis.
Anyway I am still here, at this point I consider I have a chronic condition. I work, do most things I want to do (rode me horse tonight) and go for weeks on end ignoring the fact that I have cancer.
My mother is a five year survivor (six years last month in fact) also stage 3C and with no sign of recurrance to date. She was 67 at diagnosis and is also a Breast Cancer survivor.
I was diagnosed with stage 3C in December 2000 at the age of 39. The usual taxol and carboplatin and I had no sign of cancer until February 2005 when with a normal CA125 (had been elevated prior to original surgery) a biopsy confirmed that I had visible tumors again. Was referred again for surgery and (I am still angry about this) they opened me up, decided I was terminal and closed me up without even biopsying what they saw. Various chemos which made no difference followed until an oral dose of Etoposide had some effect. Apart from that I have had some radiation treatment (and lots of arguments with various so called speciallists!) To date it is all contained in my pelvis.
Anyway I am still here, at this point I consider I have a chronic condition. I work, do most things I want to do (rode me horse tonight) and go for weeks on end ignoring the fact that I have cancer.
My mother is a five year survivor (six years last month in fact) also stage 3C and with no sign of recurrance to date. She was 67 at diagnosis and is also a Breast Cancer survivor.
Julie,
This is a great idea, not only for us but for newcomers that come here feeling as though they have been handed a death sentence. Stories such as this help show that is not necesarily true.
Though I am not a 5 year survivor yet either, I have made it 3 years now, and am still doing fine overall. I too was diagnosed at stage IV and not expected to last a year. So the fact that I am still here, I consider a gift from God. And I intend on being here for many years to come.
I see that you are also stage IV. The fact that there are not many of us here, tells you a lot. That is why we need to continue to fight with all that we have, and maybe we will be the next ones who say that "I was dx stage IV, 10 years ago."
Linda, thank you for sharing your beautiful story and may you always remain NED.
Chris
This is a great idea, not only for us but for newcomers that come here feeling as though they have been handed a death sentence. Stories such as this help show that is not necesarily true.
Though I am not a 5 year survivor yet either, I have made it 3 years now, and am still doing fine overall. I too was diagnosed at stage IV and not expected to last a year. So the fact that I am still here, I consider a gift from God. And I intend on being here for many years to come.
I see that you are also stage IV. The fact that there are not many of us here, tells you a lot. That is why we need to continue to fight with all that we have, and maybe we will be the next ones who say that "I was dx stage IV, 10 years ago."
Linda, thank you for sharing your beautiful story and may you always remain NED.
Chris
Thanks for starting this, Julie. I am gathering strength so in a few more years I will be telling a 5 year survival story of my own. Love to all, Marie
What a wonderful, uplifting story. Thanks so much for sharing now at this very tough time.
I have been visiting this site since I finished chemo in July 2004. I am a Stage 1, 3C ovarian cancer survivor. My debulking took place in March, 2004, at age 62. My CA 125 at the time of surgery was 38, only mildly elevated. Pathology was completely clear except for the contents of the cyst on my right ovary. All 20 other sites were negative for cancer.
My mother had died of OVCA in 1975, when there was no real treatment available. We knew it was a death sentence after her initial surgery. She was 57. Because of the family history, my gyn/onc thought it would be a good idea to do 6 courses of chemo: taxotere and carboplatin. Other than one brief stay in the hospital for low blood count after my first round of chemo, I did fine for the additional 5 rounds.
Since finishing, my CA 125 has remained below 5, my hair has come back to about 2/3 it's original thickness. While it was super curly before cancer, it is fairly straight now. Go figure. All those years I wanted straight hair and now that I'm 67, I would like some curls around my face! I also would like to have my old eyelashes back as the ones I have now are barely there.
What silly vanities to think about in the face of seriousness of cancer. I have been miraculously lucky; lucky to have trusted my instincts that something was very wrong and pushed a very reluctant gastrointerologist into ordering a CT Scan; lucky to have gotten a talented and caring surgeon who so meticulously removed a grapefruit sized cyst without breaking it and spilling cancer cells throughout my abdomen.
A year ago, my onc told me I could now say that I "had" cancer...it was a thing of the past. It was comforting, but I don't think I will ever fully believe it even after next July, when I will be 5 years NED. So, I remain with you and I check into this page almost daily. I know many of you by following your stories, your victories, and your pain. Leslee, Tybear, Brownie, Gia, Joanne, Simply Star, Marie...and so many others that are, or have been, a part of my own journey.
Before I die, it is my fervent hope that cancer, like polio and smallpox, will be beaten and eradicated. I believe I will get my wish.
Linda
My mother had died of OVCA in 1975, when there was no real treatment available. We knew it was a death sentence after her initial surgery. She was 57. Because of the family history, my gyn/onc thought it would be a good idea to do 6 courses of chemo: taxotere and carboplatin. Other than one brief stay in the hospital for low blood count after my first round of chemo, I did fine for the additional 5 rounds.
Since finishing, my CA 125 has remained below 5, my hair has come back to about 2/3 it's original thickness. While it was super curly before cancer, it is fairly straight now. Go figure. All those years I wanted straight hair and now that I'm 67, I would like some curls around my face! I also would like to have my old eyelashes back as the ones I have now are barely there.
What silly vanities to think about in the face of seriousness of cancer. I have been miraculously lucky; lucky to have trusted my instincts that something was very wrong and pushed a very reluctant gastrointerologist into ordering a CT Scan; lucky to have gotten a talented and caring surgeon who so meticulously removed a grapefruit sized cyst without breaking it and spilling cancer cells throughout my abdomen.
A year ago, my onc told me I could now say that I "had" cancer...it was a thing of the past. It was comforting, but I don't think I will ever fully believe it even after next July, when I will be 5 years NED. So, I remain with you and I check into this page almost daily. I know many of you by following your stories, your victories, and your pain. Leslee, Tybear, Brownie, Gia, Joanne, Simply Star, Marie...and so many others that are, or have been, a part of my own journey.
Before I die, it is my fervent hope that cancer, like polio and smallpox, will be beaten and eradicated. I believe I will get my wish.
Linda
Thanks for the stories. We all need to hear about victories. Laurel...love your attitude and username. love Julie
You have probably read my story in parts many times. I have written parts of it off and on. I was diagnosed with low grade ovarian cancer, stage 3 in 1994. I was teaching at the time. I had the usual hysterectomy, but they had to stop the operation as my heart stopped twice. I had a second operation a month later. My cardialogist placed a pace maker on my shoulder and threaded the wire either through my neck or under my arm. They felt they had gotten all the cancer, but I had chemo for 6 months, once a month to get the remaining cels that could not be seen. They told me I had a 40% chance to live 5 years. I asked God, whose presence was with me all my waking time, to let me live until my grandchildren didn't need me anymore. And here I am going on my 15th year. Every oncologist, I went to insisted I take chemo. I went to a gyn/onc. who is a specialist and asked if there was something I could take besides chemo. Bless him, he called me on a Sat. morning and said, ":Let's try Tamoxifen." My CA 125 went from close to 100 to 12. After I retired in 1999, we moved to Central Texas from Houston. The doctors here would not believe that Tamoxifen helped me, even when I showed them an article about women dying from low grade cancer, about 60% of their deaths were caused by treatment. I was hurting so badly, I finally gave in. After 4 treatments my CA125 went higher than it had been before and I developed nueropathy. I asked for antiestrogen before they gave me Taxol. Whey the doc refused, I asked to change doctors. After that, I was treated so badly by all the doctors in our system that I finally went back to my Houston doctor. I could write a book about how badly I was treated, but they did give me Arimidex and it did lower my CA125. Now, we drive to Houston every 3 months. The best part is I am still alive and I get to see my family frequently.
Mine was caught early...IC.....I finished chemo in October of 2005. My next appt with my onc is in March and I will recheck my CA125.....at that point I will be 3 1/2 years out from chemo, or, one month short of four years since diagnosis. My CA125 hangs around the 3.0 level.
I fully realize how lucky I am and I never forget it. I come here often to see if I might be able to offer support. I owe that. I will always owe that...no matter what lies ahead for me.
Peace.
dian
I fully realize how lucky I am and I never forget it. I come here often to see if I might be able to offer support. I owe that. I will always owe that...no matter what lies ahead for me.
Peace.
dian
I recently lost a friend, 9.5 year stage IV survivor.....9.5 years...she was on arimidex after her initial carbo/taxol treatment.
I have a friend that is 22 year stage III survivor that never did chemo...she felt if she needed it,she could always have it later.
We have a program for newly diagnosed woman and we provide them with info, inspirational material, blankets, hats, etc....one of my quilters is a stage 3 15 year survivor.
There is another woman in my chapter that just made 5 years as a stage 3.
It is possible to beat this monster!!!!
I have a friend that is 22 year stage III survivor that never did chemo...she felt if she needed it,she could always have it later.
We have a program for newly diagnosed woman and we provide them with info, inspirational material, blankets, hats, etc....one of my quilters is a stage 3 15 year survivor.
There is another woman in my chapter that just made 5 years as a stage 3.
It is possible to beat this monster!!!!
Well I know 5 years I am not but I am 2 and half years. I was first thought to be stage four but after debulking is was stage 3B I did not have any cancer in my lymph nodes but did have 10 inches of my colon removed and reattached during the operation. I have 6 rounds of iv taxatere and 6 rounds ip cisplatin and 3 rounds of ip taxol. I am also BRACA 1
so next wednesday I will have a double prophalactic mastectomy and breast reconstruction. fun ha. I love life I eat well and take alot of suppliments and a very special green tea throughout the day. My second doctor in chicago feels i have gone over one hurdle because my cancer was aggressive and now i am marching to the five year mark.
PS just had my ca 125 monday so hopefully by march to health continues i will find out friday.
Laurel the Conqueror
so next wednesday I will have a double prophalactic mastectomy and breast reconstruction. fun ha. I love life I eat well and take alot of suppliments and a very special green tea throughout the day. My second doctor in chicago feels i have gone over one hurdle because my cancer was aggressive and now i am marching to the five year mark.
PS just had my ca 125 monday so hopefully by march to health continues i will find out friday.
Laurel the Conqueror
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