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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

katymorgan
Posts: 4
Joined: May 2012

Hi again!  I enjoyed six months of no treatment and hair grew back!  But had a recurrence of ovarian cancer near the fallopian tube and abdominal wall which are small.  So, I started back on carboplatin and getting Gemzar eight days later.  I tolerated the chemo well so far.  I think my regimen will be three weeks of chemo, one week off. 

 I'm in good spirits and enjoying my life. What has helped me very much is preparing for and attending weekly meetings at the Kingdom Hall of Jehovah's Witnesses because their educational program is free, conveniently located in most areas world wide and tremendous!  Most of us have perplexing questions like if God is love why does he allow suffering? What happens to us when we die?  Is there any hope for our dead loved ones?  How can caregivers cope with an ailing family member?  How can I deal with stress and anxiety of illness?  Are natural disasters punishment from God?  I have found satisfying and reliable answers in the Bible.  You can also view many articles and publications on these subjects online for free at jw.org which includes downloadable music and reading the Bible online.  I have to say that this plays a major role in my positive attitude.  Best wishes to you all!     

SHANNON1231's picture
SHANNON1231
Posts: 53
Joined: Nov 2012

I don't know if i'm considered a survivor just yet, I was diagnosed on February 29th 2012. The cancer was found in a lymph node in my underarm, and peppered ( what my onc called it) in my diaghram. I'm currently in a clinical trial that included a lower dose of taxol once a month for a year. I think i'm already having a re-ocurrance though. Only had 4 treatments from the trial and my ca125 is up to 44 and I have been having some discomfort in my diaphram. Cat scan showed thickening in that area and now I am scheduled for a biopsy next week. If its possitive I will be off the trial. My dr said I have alot of options though so that's reassuring, I guess. I'm scared it will move into my lungs. I read about the bucket list post, and I honestly don't have things I want to do. I just want to be here long enough for my boys to grow up. They are only 9 and 5, and it kills me to have to imagine dying and how they are gonna feel and how they will have to live without me. I just wish to at least be here until they are men and I know they can take care of themselves. CANCER SUCKS.

pandagypsy
Posts: 8
Joined: Jul 2014

Shannon, I stopped when I got to the  point where you mentioned your 9 and 5 year old.  Flash back waaaaaaaay back to 1983....I was diagnosed with breast cancer, son 4 and daughter 9......How could I leave them without a mother?????  I was so depressed, cried a lot, made "deals with the devil" as I called them....wrote the kids notes, saying I was sorry to not be there, be kind to Dad, help him continue family life..........sniff sniff.....OMG, I wasted so much time feeling sorry for myself and everyone else.......chemo was tuff......hubby more scared than I was....we fought so much......son told his friend that Daddy pulled all of Mommy's hair out....lots of explaining to friends mother, but it was good to finally tell someone......1985 reoccurrance, hubby and me say GET RID OF THEM.... bilateral mastectomy with immediate reconstruction.....had a few replacements, but caught the cancer early so NO CHEMO!!! I got to see my kids grow up, daughter marry, son also married, daughter has 2 great kids (girl is 15. boy is 12)  IT IS NOT THE END OF THE WORLD!!!!! Find the best doctors you can, find a teaching hospital where they are doing the latest and greatest.......I beat breast cancer, but wasn't aware that I was HIGH RISK for ovarian cancer......

Feb 2009 diagnosed with stage IV ovarian cancer, once again thought it was THE END.....couldn't make future plans.....6 months intense chemo.....surgery and debulking......6 more months of chemo.......but the kids grew up and have great lives and families.....I lived through all of it....decided it was time to make some long term plans.......sold the house.....bought an rv....want to be a GYPSY......live in FLA. Stay here for the winter, spring summer and fall first stop Chicago area and catch up with family....then......anywhere the road takes us (yes, hubby survived also, we just celebrated anniversary #41).  And then, this May CT scan glowed.....PET scan confirmed reoccurance, although it is caught very early.  All I could tell my Dr. was I was just MAD!!! I have places to go, things to do, people to meet!!!!!!! He said I would just have a slight delay in my plans Yell

So far so good..........I love living in a class A rv, just enough room for us and 2 little dogs.....nothing to really "CLEAN"....hubby loves all the new RV maintenance he has to learn.....found a great resort in our old neighborhood which is very close to my treatment office. I may be stuck in FLA for this first year, but I am in a beautiful gated resort with lots of perks and cheap rent since we signed a 2 year agreement.....so cheap that we will still be able to travel after the chemo is done. CANCER SUCKS!!!!!!!!! But I am older and wiser now, and am treating it as a chronic condition. but intend to take advantage of the "good times".....yes, knowing that there will be bad times in the future...........BUT I HAVE THINGS TO DO INBETWEEN TIMES!  And you can only get thru this by GETTING THRU IT.......Cancer Sucks, but kick it's butt the best you can!!!!  I am hoping to be able to post my whereabouts next year as I roam the GOOD OL' USA!

LINDA

Antpopoola
Posts: 10
Joined: Jun 2012

KATY,
I really appreciate your positive attitude. In September of 2011 I started having discomfort in my stomach. I felt bloated and felt like I had to have a bowel movememt. I visited my doctor several times and was treated for IBS. On January 2012 I felt like I wanted to have a bowel movement but when I tried I realized I was bleeding profusely through the rectum. I went to the hospital, a colonoscopy was done the following day and a few days later I found out I had ovarian cancer that metastasies to the rectum. My tumor was 8 cm. (Dr. said the size of a baby's head) I did 3 chemos and tumor shrunk drastically. I had surgery in June. I got total debulking and also part of the rectum was taken. I had an illeostomy for 2 mths. Unfortunately, I was in and out of the hospital for various infections so my 2nd round of chemo didn't start until November. Well, after my 6th rounds of chemo a CAT Scan was taken just for me to find out I have a reoccurence. I was supposed to start my New round of chemo last Friday but couldn't because my platelets count was low. My illeostomy was reversed on June 22. I am still having accidents with bowel and bladder. Have to wear depends. But believe me, I am happy to be alive.

When I received my diagnosis both times. I NEVER thought about dying I just knew I had to do everything (nutrition, prayers, support) in my power to beat this cancer. I have maintained this positive attitude. My friends, family and even Doctors are amazed at how well I have done. They always tell me that I am inspiration to them and how wonderful I looked. Thankfully, I have overwhelming support from family and friends. Each day that I am alive is triple blessings. I look forward to many more wonderful years! WE CAN DO THIS TOGETHER! MAINTAINING A POSITIVE ATTITUDE IS 90% OF THE FIGHT. WE ARE WINNERS!

katymorgan
Posts: 4
Joined: May 2012

I really appreciated hearing from you.  You are so correct about a positive attitude.  Thanks for sharing your experiences with us. 

Shelly C
Posts: 1
Joined: Feb 2013

I was diagnosed with cancer in April 2011.  At first they thought it was Leismyoscarcoma (uterine cancer), but after a total hysterectomy (my uterus being normal), they changed my diagnosis to Ovarian Cancer, stage 3 because it had spread outside my ovaries into my abdomen.

My doctors did everything they could think of to try and get me to do chemo.  My surgery was scheduled for July and they wanted 12 weeks done before surgery.  They did everything but tell me I would die if I didn't do the chemo.  I had no health insurance and did not qualify for state help (too much income).  My husband was totally against the chemo - why put more poison in your body.  He said he wasn't going to watch me die.

I have an aunt who had just died of sickle cell cancer.  My mom had been trying to help her and found a website worldwithoutcancer.org.uk that talks about Laetrile, or Vitamin B17.  There is a 42 page explanation of how this works and how it is basically banned in the US because pharmaceutical companies cannot reproduce a vitamin and make money from it.  It gives a regimen of vitamins to take while fighting cancer and also a maintenance plan for after the cancer is gone.

I decided on this course of treatment instead of the chemo.  My doctors were not happy with me at all.  One doctor even dropped me as a patient.  Anyway, after 3 weeks on the vitamins, and a week before surgery, my doctors ordered another CT Scan.  They said they wanted to know what they would be dealing with before the surgery since I refused chemo.  They expected my cancer to be spread throughout my body, in at least 4 more places.  Well, I surprised them all.  Instead of the cancer spreading, my original tumor shrank by 10%!!

There were 5 doctors/surgeons in the operating room and after my surgery, one of them came to me, almost in a whisper and told me they found DEAD cancer cells!!  She was very excited about this so I gave her the information about the website, B17, etc.

I still go back every 3 months for pap smear and inhibin B tests to see if the cancer has returned.  It's been almost 2 years and so far so good.  No indication at all that the cancer has come back.  And this is totally without chemo or radiation of any kind - vitamins only.  I still take 1000 mg of B17 everyday just to keep the cancer away.

If this helps anyone, I would love to hear from you.  It changed my life.

Be strong, there is hope.

Shelly

mn_catlover@msn.com (my email address)

My_Mom_India
Posts: 2
Joined: Feb 2013

Dear All,

 

My mother was diagnosed with ovary cancer in 2007 , she had a surgery and chemotheraphy of 6 cycles . And it reoccured again in 2011 , she took 6 cycle of chemo after that. But then just in 3 months the cyst reoccured in the pelvis , she then took 6 more cycle of chemo and now just after one month the CA125 count came to 251. The latest CT scan report says  1.SIGNIFICANT ASCITES  2.CYST IN THE LEFT PELVIS... ORIGIN COULD NOT BE CLEARLY MADE OUT  3.METASTASES AT THE SURFACE OF THE LIVER/ RIGHT DOME OF DIAPHRAGM,  4.OMENTAL AND PERITONEAL METASTASES

She is suffering severe pain in the abdomin , back and the chest, the right shoulder. There is accumalation of water in the abdomin. Please tell me how can my mother get out of this. The doctors here say this is in the last stage and nothing much can be done. Please help,..

Regards.

 

NYRDH
Posts: 1
Joined: Feb 2013

Hi Shelly,

I was diagnosed with Ovarian Cancer Stage IV mid Jan. 2013.  I am a young, just turned 50, healthy woman with no family history of cancer. So this came as a shock to me. I am now accepting and coming to turns with it.  I already had Laparscopy surgery and 2 cylces of chemo and believe I will be having one more before I go into surgery.  Apparently, I am taking it well and I thank God for that.

From everything I have read, there is no long term cure, just prolong the quality of life.  It always returns at one point or another.  I know there are many miracle cures out there but yours caught my attention.  I did go into the UK website which is very informative.  I am interested in purchasing the B17.  I live in NY and I read they may not ship to US.  If you don't mind, where do you live and where did you purchased the B17?

If you prefer, you can email me directly at:

nyrdh@earthlink.net

mariej's picture
mariej
Posts: 1
Joined: Jan 2013

Before you spend anything on B17, here's an article on it:

http://en.wikipedia.org/wiki/Amygdalin

My_Mom_India
Posts: 2
Joined: Feb 2013

Dear All,

 

My mother was diagnosed with ovary cancer in 2007 , she had a surgery and chemotheraphy of 6 cycles . And it reoccured again in 2011 , she took 6 cycle of chemo after that. But then just in 3 months the cyst reoccured in the pelvis , she then took 6 more cycle of chemo and now just after one month the CA125 count came to 251. The latest CT scan report says  1.SIGNIFICANT ASCITES  2.CYST IN THE LEFT PELVIS... ORIGIN COULD NOT BE CLEARLY MADE OUT  3.METASTASES AT THE SURFACE OF THE LIVER/ RIGHT DOME OF DIAPHRAGM,  4.OMENTAL AND PERITONEAL METASTASES

She is suffering severe pain in the abdomin , back and the chest, the right shoulder. There is accumalation of water in the abdomin. Please tell me how can my mother get out of this. The doctors here say this is in the last stage and nothing much can be done. Please help,.. Mail: ixdpuneeth@gmail.com

Regards.

ashi02
Posts: 1
Joined: Feb 2013

Hi All,

My mother-in-law has been diagonised for ovarian cancer from past 4months and was undergoing chemo in INDIA and completed 5 cycles successfully but all of a sudden she had gastric trouble and when diagonised with CT scan cancer has be spread all over during chemo itself. She was left with one last chemo but now doctors suggested to 6 more cycles, due to surgery she has become very tired and now unable to recover for next chemo.

She has two differnt cancer cells carcinoma and sarcoma which are very aggressive and spreading rapidly. She is unable to take chemo now without which they cannot be controlled. All of us are very much worried and unable to see her going through all this.

 

Please advise if there is any treatment which will increase her life span. By seeing her condition she might survive for another 2months or so. God plese show us some path:(. Any help is very much appreciated

 

Thank You

ashi

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

I am very sorry about your mother-in-law having trouble with chemo. I think what she has is called malignant mixed Müllerian tumor, also known as malignant mixed mesodermal tumor, MMMT and carcinosarcoma. It is rare and more agressive than a more common ovarian adenocarcinoma but treatment is the same (surgery and taxol/carboplatin chemo). I have read a few survivor stories on CSN ovarian cancer, uterine cancer and also on rare cancers boards. If you query "MMMT" you will find them. I pasted some links below.

Good luck to your family and I sincerely hope that your mother-in-law feels better and beats that disease.

http://en.wikipedia.org/wiki/Mixed_M%C3%BCllerian_tumor

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=36402

http://mrwhatis.com/mmmt-ovarian-cancer.html

http://onlinelibrary.wiley.com/doi/10.1002/cncr.20256/full

www.journalmc.org/index.php/JMC/article/viewFile/1/42

 

Wai Fund's picture
Wai Fund
Posts: 1
Joined: Mar 2013

hi there, 

my mother is an ovarian cancer survivor and because of our experience we put together a website that we hope you will visit and share. it's a work in progress--so it's starting sparsely and will grow slowly but we hope to provide hope and inspiration. pls share so we can share our strength with those fighting this horrible disease. eventually we hope to do fundraising so we can fund research and find early detection, better treatment and ultimately a cure for ovarian cancer. 

you can SEE SURVIVOR VIDEOS--pls share so we can reach anyone who needs hope.

 

www.WAIFUND.COM

 **sorry for the duplicates--accidently hit it twice. but pls share--we just want to pay it forward. 

thank you. 

ev

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

Thank you Ev for posting the link. It's a great web-site with survivor stories. I recommend that everyone on this board check it out.

Joan's video gave me goosebumps.

katymorgan
Posts: 4
Joined: May 2012

I just started on 100 mgs oral chemo for 6 cycles for recurrent ovarian cancer stage 4.  I take it a night with no side effects yet.  I may not have any.  I don't have OC in my liver or lungs just keeps growing when I go off chemo.  I've had 18 months of chemo, 6 months off, 6 months of chemo, 3 to 4 months off, now oral chemo.  Any one of us could loose our lives suddenly by a natural disaster or automobile accident, so our strength should be focused on surviving, spending time with our families, eating high nutrition and most importantly, having an intimate relationship with our Creator.   I am 51 years old and I have a good quality of life and have learned to appreciate many things.  I am especially settled knowing that all illness is just part of mankind's deviation from their Creator.  A regular study of the Bible and thinking about positive, spiritual things has really helped me maintain focus on more important issues in life.  My favorite Bible references for dealing with anxiety and depression are in Phillipians Chapter 4, verses 5, 6,7, 8 and 9. If any of you have any questions or wish to have help understanding how to cope with anxiety, despair, no hope please look at the website www.jw.org and look for topics about illness, what happens at death, why we die and you will be comforted and given the strength to cope when you learn what the Bible says on these topics.  You may also contact me personally at kathrynmorgan@charter.net.  Best regards to all. 

heavin
Posts: 1
Joined: Sep 2013

My best friend was diagnosed with stage iv ovarian cancer almost 6 months ago.   She happened to have alot of pain and a swollen abdomen that caused her to go to the ER which ended up causing emergency surgery and this terrible diagnosis.. They took her ovaries and she had 6-8 chemo sessions.At first the tumors shrank and things seem to be going goood.  She is a fighter!  Nothing keeps her down!  She went to a follow up appt and was told the cancer spread to her pelvis.  They started to get a treatment plan together and told her that her tumors have become immune to the chemo.  They now tell her they can do radiation and another type of chemo....in the same breath drs are telling her she will die.  She is a mother of a 13 year old boy who is her life.  Her husband is slowly crumbling.  She needs to decide fast if she is going to do the treatment but she doesnt want to spend what she hasleft feeling so sick she cant move.  If she doesn't do the treatment  they giver her 6 months to a year. I pray for a miracle...this is horrible!

Is there anything positive with what she is working with?  I love her and just listen..I don't nag her but Iwant to give her strength to keep up the fight.  Something positive!

Alexandra's picture
Alexandra
Posts: 1198
Joined: Jul 2012

Sorry about your friend's situation. What she has is what many ladies on this board have - stage 4 platinum-resistant ovarian cancer. It is not curable, but is treatable like a chronic disease. Some women live for years with stage 3C and 4; they have recurrences, get more chemo and keep on living.

When doctors tell her she is going to die, it's pretty much true; but so will they and you. Except no one knows when; 6 months to a year is an estimate based on group statistics. She is the statistic of one. There are many different types of chemo available; when tumors become immune to one type, they try another one to prolong patient's life. There are also trials of new drugs that she can enter, check out www.clinicaltrials.gov. Radiation is rarely done for ovarian cancer. Some people take naturopathic approach. Some people decide on quality of life vs. quantity and do nothing; it's their choice.

It is very nice of you to be there for her and listen; she is lucky to have you as a friend.

Encourage her to join this board and talk to other patients and survivors; it may give her the strength and motivation to keep fighting.

Best wishes,

Alexandra

Sarahmichelle's picture
Sarahmichelle
Posts: 1
Joined: Jul 2014

My  mom was diagnosed stage 4 in 2000, I was in 5th grade. the doctors thought it was over. The cancer was in her lymph nodes. She started chemo and my aunt (moms sister) was fighting the battle also but she didn't beat it. My moms cancer went away. 4 and a half years later it was back. Another year of chemo, I was in high school. She has now made it 5 years. Last ca125 last this week and it was 11. The pic is me and her about a half a year ago after she finished college for her rn. She had been an lpn for over 20 years. We give all the credit to the the good lord above. I was about 11 when she first got it and now I'm 24.

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