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Ovarian Cancer Stage 4 survivors

elishaw
Posts: 5
Joined: Oct 2002

I would like to hear from anyone who has survived stage 4 for relatively long period withoutexperiencing recurrent attack

als26
Posts: 48
Joined: Feb 2002

Hello-
Although this response doesn't answer your request... I wanted to let you know that my Mom is a Stage IV OVC survivor. She's been out of chemo since July. So far, her CA125 is still around 6.
Take Care :)

jenniferasturtevant
Posts: 1
Joined: Feb 2003

I have survived Stage 4 Ovarian Cancer. I have been cancer free since 1996. Would love to hear from you. Please email me at okiegirlforever@sbcglobal.net

JoJo711
Posts: 5
Joined: Mar 2003

Hi, I was diagnosed with ovc 2 weeks before Christmas. My ovaries were removed and were free of cancer, but there was a mass that apparently had broken away from the ovarian system and landed between my liver and diaphram and there is also fluid in the lining of my lung that is cancerous. Doctor says this is what puts me at stage 4. I am responding well to the chemo, my ca125 has gone from 256 to 59 . I have 5 hours of chemo a on thursday. Everything I read seems to give me a 5 year left to live verdict. If the chemo is working shouldn't this increase my years? At what point am I a survivor?
thanks for your input!
JoJo

mirtle
Posts: 32
Joined: Mar 2003

JoJo, I think with ovarian the magic number is 10 years. I almost made it -- I went 9.

JoJo711
Posts: 5
Joined: Mar 2003

Mirtle, what does that mean...10 years? At what point are you in remission? My doctor told me she has known stage 4 patient to live only 4-5 years? Thanks for your input!

leonorafriend's picture
leonorafriend
Posts: 7
Joined: Apr 2003

hi jojo I am an ovarian cancer survivor, too. I feel when you have surgery and/or receive chemo, than YOU are a SURVIVOR!! Be strong and keep up the good work. email me if you like. lfriend@newportrischools.org

mollasas
Posts: 4
Joined: Apr 2012

I am a newly diagnosed and still try to obtain pre conditioned medical insurance so i can afford to start treatment, this has been the very nerve consuming for me, just want to hear the realities of beating this situation

leesag's picture
leesag
Posts: 625
Joined: Jan 2010

oops wrong topic

alan salih
Posts: 1
Joined: May 2013

Have a nice time

 
I'm Hawzheen Ramazan from Iraq
 
my loved aunt unfortunately diagnosed with ovarian cancer 2011. 
 
last week  by PET scan, it was appeared that she has recurrence of her disease, and she should receive treatment again
 
I'm anxious, I searched in internet and found your Email address.
 
I'm happy when I hear someone survived with ovarian cancer, I want to congratulate you.
 
Please I like to hear from you what did you do? did you used any special treatment? did you have a dietary regime that helped you?
 
(Madam excuse me, in recent time because of my anxiety and lots of negative thinking, I told my self that there is no survival from ovarian cancer, those people that they said they are survivor, is just a hope that some website give it to patients, just in order to make a hope for those patients, but it's not real! am I wrong? , I hope strongly that I'm wrong!, please if you can confirm to me that really there is in fact survivors of ovarian cancer Please).
 
Thank you for your help
 
best regards
 
Hawzheen Ramazan
mirtle
Posts: 32
Joined: Mar 2003

Elishaw, I was diagnosed in 1993 followed by surgery and chemo. I went for 9 years before it recurred. I am currently getting chemo and have had excellent results. I know this is not what you wanted to hear but I consider myself somewhat of a miracle for going that long. Hope this helps you.

pullingforlou
Posts: 7
Joined: Nov 2009

When it came back where was it? My mother had a hysterictamy and it came back in her colon and liver. Protocal is chemo which we start Monday

saundra's picture
saundra
Posts: 1390
Joined: Mar 2007

Diagnoses 3/2007 and am in first recurrence as of August. I have had 11 months with no chemo.
I feel good most of the time. You can click on my picture to read of the treatments I have had. I try not to dwell on how many years. After all I could have a fatal car wreck tomorrow. Saundra

wannaknow
Posts: 12
Joined: Apr 2010

Hi..im looking at the dates from these posts and im freaking out...i have just been diagnosed with stage 4. PLEASE..ANYONE HERE?????

arbor3's picture
arbor3
Posts: 105
Joined: Mar 2009

Hi Wannaknow

I was dx with stage 4 OVCA in Augut 2006. I am on Chemo now, but I do have breaks in between the Chemo. I was told from the beginning that I would never be in complete remission, but I feel good and keeps the cancer down and from spreading. I said in the beginning that I would beat this beast and I am still beating it back.
Never give up the hope is always there.

Hugs!!!!!!!!!!!!Dinora

leesag's picture
leesag
Posts: 625
Joined: Jan 2010

Hi wannaknow,

I know how how you feel (sorta) I was diagnosed stage IIIC in January. I look at it this way, the five year statistics you read today are for women who were diagnosed five years ago, many advances have been made since then, so the five year stats will be way different every year. Keep the faith honey, and join some of the more recent threads.

HUGS!

Leesa

Amanda_75
Posts: 3
Joined: Jul 2010

Leesa, Your post makes my heart happy. You're absolutely right. Thanks for sharing.

I am stage IV diagnosed July 12 and today marks my 1/2 way point w/my carbo/taxil/avastin concoction. I know that a positive attitude will only help. Thanks for your inspiration.

Amanda

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Diagnosed Sept. 2008. I look at old posts too and wonder where they are.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Me, too. Realistically, I have to assume that some of them lost the battle, but I'm thinking that others simply tired of being focused on cancer all the time and dropped off the board to live their lives. I know that happens consistently on other forums, with other issues.

Unlike some of the other message sites, this one does not have a memoriam page. Maybe that is by design, and maybe it's for the best.

Carlene

angiedryden's picture
angiedryden
Posts: 58
Joined: Apr 2010

I just discovered this site today. As I am writing my mom is in the hospital. She had surgery 11 days ago to remove cancer from the ovary and abdomen. Pathology came back and it is stage IV. She isn't doing well after the surgery. I was curious about the types of chemo for stage IV ovarian cancer. Has anyone had the type that is put directly in the stomach by a cath. Any information would be very much appreciated.

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

Curious to know how old your Mom is and if her age and pre-surgery health is playing a factor in her post op recovery? I was 41 at time of diagnosis and in good health. I had a 9hr surgery that left me very, very weak. Hopefully your Mom will regain her strength although it may take some time.

I had an IP port placed for chemo directly into the abdominal cavity. It is, reportedly, superior to traditional IV chemo. She will probably recieve Taxol and Cisplatin throught the IP port. It will be very tough and it wreaks havoc on the digestive system. Did she have a bowel resection? I was left with a temporary illeostomy after my initial surgery. It was revered after 5 rounds of IV treatment. When they did the reversal they did a 'second look' and placed the IP port for additional chemo. I had 3 rounds of IP chemo. It was tough but it is the gold standard. Superior even to the new dose dense taxol regimen. I don't want to overload you with too much information. It is ALOT to digest. Please ask questions. Good luck to your Mom and your family.

Nancy

angiedryden's picture
angiedryden
Posts: 58
Joined: Apr 2010

My mom is 70. She had colon cancer a little over a yr. ago and was doing fine. This was the second colon cancer. When she had this last surgery for the ovarian cancer which was also in the abdomen, they also had to remove some small intestines. She developed a obstruction a few days ago and has been throwing up alot. Thank you so much for the information. I wanted to get some info before she goes to the oncologist. Another question I have is concerning clinical trials. From what I read, there are some out there right now. Do you know anything about them or did you participate in any?

Thanks again,

Angie

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Angie....many Oncologists have a research nurse who keeps track of the clinical trials available, and which patients are good candidates for each one. Ask your mom's doctor if he does that. Otherwise, you can use the "Clinical Trials Finder" on this site (in the blue box to your left).

Carlene

angiedryden's picture
angiedryden
Posts: 58
Joined: Apr 2010

Thanks so much Carlene. I am just trying to get some info before she sees the oncologist.

Angie

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

I recv my treatment at memorial sloan kettering cancer care. If you go to MSKCC.org they have a clinical trial link. Of course it only talks about the trials they are doing. Educate yourself about the different phases of clinical trials. I don't think I would do a stage I or even a stage II trial. At least not at this point in my illness. I have not participated in a clinical trial although I did qualify for one whe I was first diagnosed. It is the ongoing trial carbo/taxol and avastin. My oncologist did not recommend it because I had an illeostomy at the time. Avastin has the potential of causing bowel perforation. I was told if my current therapy(for my first recurrence) doesn't work I could either do traditional treatment or there are 3 new trials opening up at sloan kettering. I haven't looked into the trials yet but I already told my oncologist I am not interested in stage I or II trials.

angiedryden's picture
angiedryden
Posts: 58
Joined: Apr 2010

Thanks so much for the info. There is just so much to take in. I just want to learn as much as possible so we will know the choices out there.

Angie

Amanda_75
Posts: 3
Joined: Jul 2010

Hi Angie,
First of all, I hope and pray that your mom is doing well. I have been browsing around this message board for a while and can tell you that the women on here are very amazing. After reading through,I feel like I already know many of you. I guess this thread finally gave me the guts to post.

I am hoping to 'bump' this message back to the top. I was diagnosed on July 12 w/Stage IV and would love to hear your inspirational survivor stories. Today marks my 1/2 way point w/my 6 cycles of chemotherapy. I am getting carbo and taxil and avastin. My numbers have been good and I've been moving through the treatments alright. My last CA-125 count was 33 and I'm getting the next blood test done this week. I'm hoping that number is down even more. I haven't completely healed from my hysterectomy-debulking, so I have missed two carbo treatments in my IP port. They have gone in my IV. I am praying that it heals, so the carbo can go directly in my belly to the 'problem areas.' Of course, I am scared to pieces. I hate it when I hear people talk about my 'survivability.' I know the hardest may be yet to come when I'm done w/treatments and the word 'reoccurrence' keeps coming up. It does me good to hear success stories. PLEASE, I would love to hear success stories to keep me positive throughout this scary mess.

Thanks, Amanda

KarynH's picture
KarynH
Posts: 32
Joined: Jun 2010

Hi Amanda.

My mom was diagnosed 1 year ago, stage 4, and will have her last initial round of chemo September 30. She is doing very well!! Her latest CT scan showed no evidence of disease and her CA-125 before her last chemo was 36.

She started with carbo/taxol and avastin was added later. She did not receive debulking surgery. For reasons that are still a little unclear to me, her Dr.s did not recommend it for her at that time. Her treatments have taken 3 times longer than the norm, as her marker came down very very slowly. Aside from the 4 or 5 days after chemo, she has tolerated the treatments very well.

Please click on my profile to read more about her journey.

carmi604
Posts: 4
Joined: May 2011

Dear Hissy, Thanks for your insightful messages. I was diagnosed with OC three years ago, had chemo and surgery and further chemos, the last of them making me really sick. Having recoverred from the chemo I now feel I don't want any more. It takes weeks and months, feeling miserable long after, at least thie was my reaction to Doxil. Now I feel fully OK although the growths are still there, probably growing, but my doctor says my venerable age is an asset because the cells don't divide so rapidly... Anyway, I am one of whom you said they had enough of treatments, and just live with the beast. I never had pains. So maybe I'll be on the lucky side of the stats.

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Dear Carmi....

We all have to make this decision for ourselves. There is no right or wrong time to call it quits, as far as treatment, and I know that chemo is a b**ch, but not every drug leaves you feeling like a limp dishrag.

Please don't rule out more treatment without at least trying it first. Avastin, they tell me, is much easier on the body. And there are so many others.

If you try it and it still kicks your butt, you can always quit after one or two rounds.

Stay in touch, whatever you decide....OK?

Carlene

carmi604
Posts: 4
Joined: May 2011

Dear Hissy, Thanks for your insightful messages. I was diagnosed with OC three years ago, had chemo and surgery and further chemos, the last of them making me really sick. Having recoverred from the chemo I now feel I don't want any more. It takes weeks and months, feeling miserable long after, at least thie was my reaction to Doxil. Now I feel fully OK although the growths are still there, probably growing, but my doctor says my venerable age is an asset because the cells don't divide so rapidly... Anyway, I am one of whom you said they had enough of treatments, and just live with the beast. I never had pains. So maybe I'll be on the lucky side of the stats.

8isenough's picture
8isenough
Posts: 16
Joined: Aug 2010

my mom has adv ovc and i thought last night i would like to ask that very same question,is there anyone whos a survivor of this and how did thet do it? God bless K.S

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

Absolutely....some do survive, even Stage IV. How is not always something withing our control. Number one is the skill of the surgeon, if they have surgery. The better the surgeon, the less chance of recurrence. Next is how well they respond to chemo. Some people are like the Energizer Bunny....they just keep bouncing back. I know a woman (in real life) who has survived 12 years with advanced, recurrent OC. She has been on chemo more than off during that time, but she seems to respond well to every single "cocktail" and just keeps on kicking cancer's butt. Currently she is being treated for mets to her back.

Carlene

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

The better the surgeon, the less chance of recurrence?
Its the first time i have heard of that. If cancer has metatasized, often surgery is not a viable option. Recurrance is based on where the cancer cells have traveled and often can be mircoscopic for a time until detectable. The path report often determines the chances of recurrance and the stage

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

When de-bulking is optimal, and possible, the patient has a substantially better chance of long-term survival, according to numerous studies. Mets to disant organs/systems, of course, would not be affected by initial de-bulking surgery. It is generally supposed that those secondary tumors would respond to chemotherapy. I quote here:

From the National Alliance on Ovarian Cancer Conference Summary...
"Aggressive surgery continues to be linked to better outcomes; one study showed that optimal debulking gives patients a median overall survival of 80 months."

MedPage Today, Sven Mahner, MD, of University Medical Center Hamburg-Eppendorf in Hamburg, Germany, reporting at the American Society of Clinical Oncology meeting.
"Our data show that the prognostic importance of initial surgery extends beyond initial treatment to recurrent disease, particularly for patients who have a platinum-free interval of more than 12 months."

Journal of Oncology, April, 2009
"There is agreement that one of the most important prognostic factors for survival in the treatment of ovarian cancer is the amount of residual tumour after cytoreduction."

leesag's picture
leesag
Posts: 625
Joined: Jan 2010

The question is, what is considered optimal debulking? My gyn/onc (one of the best in the country from all reports) stated that he got "95% of the cancer" during my surgery and was confident that chemo would take care of any remaining cancer. A subseqent CT scan showed a tumor of approximately 1.5 cm that had grown between surgery and chemo. My CT after 6 rounds of carbo/taxol was completely clear.

Apparently, while my surgeon removed 95% of the cancer, my cancer was very aggressive and rapidly growing.

*sigh* I find if I try to wrap my head around stats and what they mean for me, I need an ativan. I fear that I am one of those people who will live in the moment with this disease and try not to think about it too often between doctor appointments.

For the moment, I'll focus on my clean CT and deal with any future problems if or when they show up.

Hugs and Prayers!

Leesa

Hissy_Fitz's picture
Hissy_Fitz
Posts: 1869
Joined: Sep 2009

The fact that your doctor was unable to remove 5% of your cancer does not have any bearing on whether your surgery was optimal or not. Optimal de-bulking means that although multiple tumors may have been left behind, no one tumor was larger than 1cm. So it definitely sounds like your de-bulking was optimal, Leesa. The tumor that grew to 1.5cm between surgery and chemo was almost certainly a microscopic dot at the time of your surgery.

Just 10 years ago, the standard was 2cm. The bar was raised (or should I say "lowered")due to the innovation of better tools and surgical techniques.

A few doctors advocate "ultra"-radical de-bulking surgery, which may involve removing parts of the liver, spleen, lung, multiple portions of the bowel, and lymph nodes in areas that many surgeons consider very risky.
Not all patients can tolerate this 6-8 hour surgery well and not all surgeons are comfortable performing these procedures. The goal is to achieve a microscopic ("sand" size) "optimal" surgery, but there is a lot of disagreement as to whether or not such aggressive surgery really impacts long-term survival.

djinco's picture
djinco
Posts: 87
Joined: Feb 2010

I am extremely grateful to my surgeon, Dr. Dirk Pikaart, at Penrose Cancer Center in Colorado Springs, CO. I had my complete hysterectomy and omentectomy on February 1, 2010. I am responding well to all treatments received thus far and am currently on consolidation Taxol chemotherapy. I was diagnosed with ovarian stage IIIc and uterine stage II.

I concur with all you said about optimal debulking surgery. A surgeon's skills seems of paramount necessity for one's long term well-being.

Also, my faith in Jesus sustains me daily. I pray everyday for continued healing and trust in the Lord that I have many years to share with my husband of thirty plus years. Positive attitude and not fear is what makes life enjoyable. I am grateful for every hour of every day.

mollasas
Posts: 4
Joined: Apr 2012

Not to insult anyone, the Bible helps your faith of healing and guides you thru but you need to regonized the power of prayer and the belief of Jesus, and what you have been given to understand and go forward with life... God Bless

nancy591's picture
nancy591
Posts: 1059
Joined: Sep 2009

My 9hr surgery was considered optimal. After 5 rounds of IV carbo/taxol I was NED via ct scan with a ca125 of 8. My illeostomy was reversed, a 2nd look & biopsy were done as well as an IP port placed. No cancer was seen and biposies were negative. I went on to receive 3 additional IP treatment of cisplat/taxol. I recurred within 8 months post chemo.

msfanciful
Posts: 580
Joined: Nov 2009

I'm a stage iv ovarian cancer surivor of almost 4 years
this coming February 2011.

Although not without it's challenges, although that is to be expected.

I've been in and out of just as many chemo treatments and am currently in remission again.

I expect with stage iv, chemo will just always be a way of life (off and on) for me and that's okay because I have still managed to have a very fulfilling, active and unincumbered lifestyle.

So I count my blessings and that's a wonderful thing.

It's just how you choose to perceive your condition as well.

Sharon

JosieO's picture
JosieO
Posts: 12
Joined: Sep 2010

Sharon I to believe it's how you choose to perceive your condition.
I think waking up everyday after being diagnosed with stage 4 Ovarian cancer you are considered a survivor. I think for every minute you decide to continue to fight back and keep a positive attitude and not let cancer win you are a survivor. I don't believe it can be defined by days, weeks or years. As long as you are here at this moment your are a SURVIVOR!

Josie

angiedryden's picture
angiedryden
Posts: 58
Joined: Apr 2010

I wanted to let you know my mom has one more chemo and she will be finished for now we hope. Her CA-125 is 4.8 which is excellent. She has done so well with the chemo, with only a few minor setbacks. I hope you are doing well. I truly believe you have to keep the positive attitude..it has really helped my mom. I'm not saying she hasn't had a few bad days but she has for the most part been so positive. I will send up some prayers for you and all the other wonderful women on here.

laurenrae
Posts: 5
Joined: Apr 2011

I would love to chat with you.

I look at you and you remind me so much of my mother! She was diagnosed stage 4 in 2009 but it's almost like aside from the cancer, there is nothing wrong with her!

I am just really interested in your experience becuase you and my mother's situation is very similar.

I hope you are open to that - thank you for sharing your story :-)

Lauren

AVD
Posts: 1
Joined: Jun 2011

Hello All,

I am just joining this group and first of all THANK YOU to all of you who have shown the courage to share their information in hope to help other. That by itself is an admirable quality and I truly appreciate all of your inputs.
I am here because my 72 year old mother has been diagnosed with stage 4 OVC. She has had 2 chemo’s and is due for the third in a few days.
Like some of you said, she is fine but for the cancer. The week of cancer is a little tough on her as she is tiered and sleepy and sometimes nausea hits her.

Needless to say she has lost her hair but is taking that really well. She is in India getting treated at one of the best hospitals. So that is good.
When I first heard of it (A month and half back when she was diagnosed), I thought the worst and rushed to be with her. Stayed with her first 2 chemo’s and got back last week. I thought I was going to loose her within 1-2 months and it terrified me. Now when I hear the magic number is 10 years makes me real happy. I want to relish the years I have with her. I consider even 5 years a bonus. I have been out of work for a while and while that has been very difficult, I thought one day if god gave me one wish, what would I ask for? Work or my mom's health and I choose the latter.
I think he heard me and I am very grateful for that.
Growing up, I did not appreciate all my mom did for us. Now I know there are so many things I want to tell her and do for her. I have been given this chance and I intend to make things work.
All the differences that we as siblings have had and the pain it must have caused her over the last few years. All of that from my side is taking a positive turn and I feel I am able to contribute positively to the family. I am binding the family which is very important. This must give my mother peace of mind which I hear is very important for recovery.

So question to all of you, anybody in the age group of my mother 70+, been through OVC to tell a great story?
I am looking for any information that will calm all of our minds.

Thank you,
AVD

mollasas
Posts: 4
Joined: Apr 2012

God is good, and he likes to be the one to make the decision, pray and read the good book that instruction is given, God Bless

Pusteblume
Posts: 3
Joined: Dec 2010

I was DX May 2010 with ovarian cancer and had 1st.recurrene December 2010.
I am currently ip Chemotherapy.

rhondanna
Posts: 8
Joined: Oct 2010

I was diagnosed in 2006 and while I have never had a remission, I have had a very good life in the intervening years and my son is now 11 instead of 5 1/2 when I was first diagnosed. There's plenty of life left beyond five years - enjoy yourself as much as possible and love everybody.

katymorgan
Posts: 4
Joined: May 2012

Diagnosed 12/2010; ovarian cancer was present in both ovaries, a tumor near uterus and fluid in the lung lining. Debulcking was initiated but cancer was present in too many areas. I had 6 rounds of chemo which brought my CA125 from 2711 to below 10. My CT Scan shows remission; my onchologist highly suggested 12, one per month, cycles of maintenance chemo. I'll have my 12th cycle next month. My quality of life has been very good. I thank my Creator every day for my great life, try to be a good example in dealing with trials and look forward to future. You just don't know what tomorrow will bring. I am optimistic that I will have many more years..they may not be problem free. But, I will try very hard to have proper nutrition so my immunity can work at it's peak. Katy

Husband_of_Gina
Posts: 2
Joined: Feb 2012

Katy,
Thanks for posting. My wife was diagnosed with stage 4 ovarian cancer in January of 2012. She had a pleural effusion that was drained and a small malignant tumor near the base of her neck. She has had 5 carboplatin/taxol infusions so far and a debulking may be in the future. How has your body handled your treatment? This last dose has been much more difficult for my wife to get over than the previous ones. Best wishes to you and yours.

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