Ovarian Cancer Stage 4 survivors

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  • Alexandra
    Alexandra Member Posts: 1,308
    Wai Fund said:

    New Resource see Ovarian Cancer SURVIVORS

    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

    Wai Fund

    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
    katymorgan Member Posts: 4
    Update

    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. 

  • katymorgan
    katymorgan Member Posts: 4

    Survivor Stage IV OVARIAN CANCER
    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!

    I really appreciated hearing

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

  • heavin
    heavin Member Posts: 1 Member
    to young to die...

    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
    Alexandra Member Posts: 1,308
    heavin said:

    to young to die...

    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!

    Hello Heavin

    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
    Sarahmichelle Member Posts: 1
    Hope

    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.

  • pandagypsy
    pandagypsy Member Posts: 113

    Stage 4

    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.

    Kids

    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

  • vanessa_orz
    vanessa_orz Member Posts: 1

    Hope

    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.

    My mom has cancer

    Hey Sarah Michelle. I ofund out about a month ago that my mom has ovarian cancer stage 4. I find it so hard to be strong for her when I see her falling apart. She has had her surgery and we are seeing the doctor soon for a follow up appointment. It has taken time for her sickness to sink in and I am terrified for when she will have to go through chemo. Right now I know she is sick but it does not feel like it because she looks like her same old self. I don't know how I will cope when I see her getting sicker and sicker. I am writing you to see if you have any tips or helpful advice on what I should do to help her get through this situation. What kind of things did you say to her to make her feel better? Thanks. 

  • TammyC51
    TammyC51 Member Posts: 1
    edited February 2017 #70
    rhondanna said:

    stage IV
    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.

    I was glad to see this post. I was diagnosed in Jan. of 2016 with stage four ovarian cancer. As of December 9th, 2016, I am in remission. I did 8 rounds of carboplatin with paxlitaxol and my pet scan in December showed no cancer activity. Because of this, my doctor has oppted to do no maintenence treatments and also to not surgically remove what is left of my last tumor since it is not active. I have not had my ovaries removed or any surgery and am hoping my doctor is making the right decisions for me. If anyone has information to the contrary for me, Please let me know.

  • cncersucks44
    cncersucks44 Member Posts: 1
    edited August 2017 #71
    TammyC51 said:

    I was glad to see this post. I was diagnosed in Jan. of 2016 with stage four ovarian cancer. As of December 9th, 2016, I am in remission. I did 8 rounds of carboplatin with paxlitaxol and my pet scan in December showed no cancer activity. Because of this, my doctor has oppted to do no maintenence treatments and also to not surgically remove what is left of my last tumor since it is not active. I have not had my ovaries removed or any surgery and am hoping my doctor is making the right decisions for me. If anyone has information to the contrary for me, Please let me know.

    How are you

    hi my aunt was diagnosed with ovarian cancer and lung cancer, which means I believe she is in stage 4. I'm wondering how your doing and what process you went. We just found out and very much in shock.

  • dannythakur
    dannythakur Member Posts: 18

    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

    kindly share your treatment

    kindly share your treatment plan and drug used. 

  • dannythakur
    dannythakur Member Posts: 18
    saundra said:

    I'm stage IV
    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

    kindly share your treatment

    kindly share your treatment plan 

  • m3cjta
    m3cjta Member Posts: 2
    Are there any women on here

    Are there any women on here that have been diagnosed with hypercalcemic small cell carcinoma of the ovary?

  • Daffodil5
    Daffodil5 Member Posts: 2

    I'm a stage iv ovarian
    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

    A way of life

    Thanks Sharon, I agree with you that it's about living with this disease—I was diagnosed 12 months ago with stage IV. I'm so heartened to hear of your fulfilling lifestyle. Good on you!

     

    I'm interested to hear what are the characteristics of long-term ovca survivors.

  • SallyN
    SallyN Member Posts: 1
    edited August 2021 #76
    Ovarian cancer survivors

    Hi - I'm looking for ladies who are doing well after Stage 3c diagnosis.  I've responded well and am having my #6 chemo next week.  Thank you - Hugs

  • shannonrose22
    shannonrose22 Member Posts: 3 *

    I would love to put you in touch with my mom if possible. Please reach out and let me know. She is a very active person who if you would look at her wouldn't know anything is wrong either. Please email me at shannonerose22@gmail.com if open to it.

  • shannonrose22
    shannonrose22 Member Posts: 3 *

    Hi Lauren,

    my mom is looking for someone as well who is in a late stage and just had her first recurrence. She is a very active women who doesn't look like anything is wrong with her either. Please email me if possible at shannonerose22@gmail.com

  • Oloro
    Oloro Member Posts: 1 Member

    Hi everyone,

    I was diagnosed with OC IV in September last year 2021. Had 3 sets of Chemos from October to Dec. Had to miss some weeks due to low blood count. Dr. suggested surgery and I agreed to it. Surgery was done on Feb 1st 2022. Dr. said surgery went very well. Fallopian tubes, ovary and other growths in that area were removed. I had Chemo about 4 weeks ago but now Chemo has stopped due to low blood count. I am generally feeling very well guessing due to not having Chemo. Last time I had Chemo I was down for about five days. I had a CT Scan last Thursday April 28. Once Dr. reviews the results, I have a scheduled appointment where Dr. is planning to put me on some Oral medication.

    All I do is keep being positive and knowing that through faith I am going to beat this. "Cancer sacks."