My wife has stage 4 Low Grade serous ovarian cancer

Hi Folks,

My wife is 59 and has been diagnosed with recurrent metastatic low grade serous ovarian cancer. She had borderline ovarian cancer 38 years ago and ended up with congestive heart failure (cardiomyopathy) due to the chemo treatments in 1979. It is my understanding that this low grade cancer is very chemo resistant? Her doctor indicated she would not be cured of this, but they can treat the disease chemo and avastain. He doctor also thought she could survive another 10 years with continued treatments. Are there any long term survivors out there with the same cardio issues and recurrent cancer? Please share your stories.

Thanks

Steve

11 Replies

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  • Hi Steve

    You are correct that chemo usually is usually more effective on high grade but that does not mean it will not have any beneficial effects on low grade. I have a low grade of a different type so cannot comment on your wife's type. I will leave others to talk to you on that. She is obviously a strong lady to have treatment so long ago. Best wishes in your next treatment.

    Fay

  • Thanks Fay

  • Hi Steve,

    I was also diagnosed with Stage IV low grade serous cancer almost 6 yrs ago. Mine arose on a background of borderline cancer but I have so far not had any cardiac complications. I have had three lines of chemotherapy and tried hormone therapy and expect to starting 4th line although I am hoping to get onto a drug trial for low grade.

  • Thanks for the reply. How long ago did you have the borderline and what chemo drug were you given for that? Also have the current chemo treatments slowed or stopped your cancer? What areas has it spread to?

    Thanks much and Merry Christmas

    Steve

  • I was 41 when I was diagnosed and I had probably had the cancer for quite a while before I started getting symptoms and my diagnosis was quite protracted because of family circumstances my nanna was dying from stomach cancer at the time and I was living/working at the other end of the country.

    When they opened me up for my biopsy they found a mixture of borderline cancer, some high grade but mostly low grade cancer. At diagnosis I also has ascities but a collection of fluid in my chest called a pleural effusion. They found cancer cells in the fluid they drained from my chest and this made me Stage IV. As well as having cancer in my ovaries it was also on my fallopian tubes, my pelvis and on my omentum. It has also spread to my lymph nodes and I currently have a lump in the fatty layers of the skin on my lower left side of abdomen.

    After having my surgery to remove my uterus, ovaries, fallopian tubes, cervix and omentum I had 5 cycles of carboplatin. After 4 cycles my CA125 leveled out at 180 and I was told that we had maxed out the benefits of the drug and I did not need to complete the course. However for 12 months afterwards my CA125 continued to gradually fall.

    I began second line treatment in November 2013 after the cancer spread to my lymph nodes and the surface of the bowel. This time I had carboplatin with gemcitibine and avastin. The treatment was only partially successful and I stopped after 4 cycles. However in spite of my CA125 continuing to rise I remained relatively stable for 12 months.

    In January 2015 I was put on hormone treatment but in spite of having high oestrogen rceptors this treatment did not work for me so around April 2015 I started weekly taxol I have a slow response to this treatment but eventually it brought my CA125 down from 1700 to 233 and for the first time there was some shrinkage in my existing sites.

    However my CA125 started to rise again three months after completing chemotherapy and a CT scan showed some new sites but they were still relatively small so I have been on watch and wait. I saw my oncologist at the beginning of November my CA125 has gone up again, I have also been getting symptoms and my lump has reappeared. We have discussed treatment options and the possibility of a drug trial but I did not want to start treatment before Christmas. I have had another CT scan and I hopefully get to discuss the results of that on the 5 January and start the procedure to see if I will get accepted onto the LOGS trial. If I don't I will probably have caelyx and I am a bit worried about coping with the side effects.

  • You have had quite a journey which makes me sad .. I do hope you can get on the trial as I know you have been denied that in the past due to unfair criteria .. sending love at Christmas xx

  • How did they discover your wifes original borderline cancer?

  • At the age of 21 she went to the doctor and they found a cist on her ovaries, did a total hysterectomy and strong chemo of Adriamycin...bad stuff. She has been cancer free for 38 years. Other than the cardio issues she has been in pretty good health.

  • Hi Steve, 38 years with NED must be a record of sorts and eligible to get into the Guinness Books. IMHO, since her body has , in the past, accepted the chemo so very well, getting through the recurrence should be a cinch.

    First time that I have read of an enlarged heart as a fallout of chemo. Was chemo documented as the cause for her CM?

    Naimish

  • Thanks for the reply. The chemo was documented as the cause of her cardiomyopathy. I was told the drug Adriamycin is no longer used for ovarian cancer but is used for some breast cancer. Her Echo is shows her heart at 15%... we are concerned about chemo treatments wearing her heart down more but the doctors are very on top of it....so high hopes of no more damage there. Her doctor was not very encouraging about future recurrences, said to expect another in a couple of years if this one is stopped. Sounds like once you have recurrent low grade it is here forever. My wife is tough cookie so we will march on with treatments and chin up.

    Merry Christmas

    Steve

  • I have the same cancer and was diagnosed 5 years ago. I have had two rounds of chemo, the last being 3 years ago. I am currently on hormone treatment, but am aware of a trial currently being recruited for so worth asking oncologist about that. I have heard of people with low grade for 18 years.

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