Low Grade Ovarian Cancer

er02186
er02186 Member Posts: 1
edited March 2014 in Ovarian Cancer #1
Hi,

I was diagnosed with Stage 3A low-grade ovarian cancer (micro-papillary serous carcinoma) in September, had an optimal debulking surgery (total hysterecotomy) and started chemo at the end of September. So far 3 rounds down, 5 to go.

However, low-grade ovarian cancer supposedly means that it grows more slowly than the "normal" kind of ovarian cancer, but also that it is less responsive to chemo. I am on an 8 cycle treatment of carbo/topotecan and then carbo/doxil, but am curious to see what others with low-grade ovarian cancer are getting treated with. We are trying to get insurance company to approve Avastin, but no luck yet.

Please let me know if you are a low-grade cancer survivor, and if you can let me know about your treatment plan, thanks! (Note that this is not LMP.)

Erin

Comments

  • jamilou
    jamilou Member Posts: 200
    #2
    Welcome to the site
    Erin
    I am so sorry that you have had to join this site, but hope that you are able to find answers. I did not have low grade but thought I might reccommend some sites that might help. You may also want to see if there is a support group in your area where you may find women with your type of OVCA. The sites to try are: Ovarian cancer research fund (www.ocrf.org), National Ovarian Cancer Coalition (www.ovarian.org) or gilda's club (www.gildasclub.org). I hope that this helps. Good luck!
    Jami
  • saundra
    saundra Member Posts: 1,370 Member
    #3
    Welcome, to our discussion
    Mine, it the same type but "high grade". It has responded very well to carbo+taxol. I am Stage IV.
    What are you CA-125 numbers doing. Mine dropped from 2999 to 299 in three chemo treatments before the surgery. You have to watch all indicators. Saundra
  • rhondanna
    rhondanna Member Posts: 8
    #4
    Low Grade Ovarian Cancer
    I was diagnosed with Stage IV ovarian cancer in January 2006. I just saw a doctor at MD Anderson on Thursday (for a second opinion) who told me that traditional chemo was not effective with low grade ovarian cancer, but that "hormonal" agents were showing some promise. This reinforced my doctor's approach. Over four years, I tried many different chemo agents to no avail. For a year I have been only on Tamoxifen, after estrogen-receptors were found on my original tumor tissues. I have been stable on Tamoxifen only and am told should this stop working, the next thing would be another hormonal-type agent. This article is useful, from a conference at which someone from MD Anderson spoke about this:

    http://www.medscape.com/viewarticle/571866

    I know feel my chemo treatments were a waste of time and money and effort.
  • pattysoo
    pattysoo Member Posts: 170
    #5
    Low Grade O/C
    I was also diagnosed with low grade serous carcinoma, maybe Ovarian, maybe Peritoneal, stage IIIc. I just completed 6 rounds of Carbo/Taxol + 4 rounds Avastin, and that did bring my CA125 down from 99 to 24. In a couple of weeks I'll meet w/my 2nd opinion dr. @ MD Anderson for all the usual tests and his recommendation. My gyn/onc here at home recommends continuing with Avastin for maintenance. There are a couple of researchers at MD Anderson who have been looking into low grade carcinomas. There are also some interesting ideas of testing a patient's tumors to see if they're hormone receptive. It's all pretty overwhelming to try to learn about all the clinical trials/ideas that are out there, but I'm really appalled by the "shot in the dark" chemo I've received too.
    On a related note: my insurance paid both for the Avastin and the genetic testing.
    I wish all the low grade tumor ladies would keep in touch and continue to share any information you think is significant.
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
    Erin,
    welome the board. I'm so sorry you had to come here, but glad you found us. I am high grade, and you are right, it is a bit different in the response to chemo, so can't offer much info. I do have a couple friends that are long term (one gal 11 years) low grade survivors and they are all on the http://ovca.net/index.cfm board if you want to also check in there. You might be able to glean some info.

    Wishing you the very best,
    kathelen❥
  • dane1
    dane1 Member Posts: 2
    #7
    pattysoo said:

    Low Grade O/C
    I was also diagnosed with low grade serous carcinoma, maybe Ovarian, maybe Peritoneal, stage IIIc. I just completed 6 rounds of Carbo/Taxol + 4 rounds Avastin, and that did bring my CA125 down from 99 to 24. In a couple of weeks I'll meet w/my 2nd opinion dr. @ MD Anderson for all the usual tests and his recommendation. My gyn/onc here at home recommends continuing with Avastin for maintenance. There are a couple of researchers at MD Anderson who have been looking into low grade carcinomas. There are also some interesting ideas of testing a patient's tumors to see if they're hormone receptive. It's all pretty overwhelming to try to learn about all the clinical trials/ideas that are out there, but I'm really appalled by the "shot in the dark" chemo I've received too.
    On a related note: my insurance paid both for the Avastin and the genetic testing.
    I wish all the low grade tumor ladies would keep in touch and continue to share any information you think is significant.

    low grade serous ovarian cancer stage 3c
    Just had my ooperation for de bulking in april awaiting treatment of taxol and avistin. how long did you wait after your operation and have you had any side effects. Has the treatments helped.
  • aussie_84
    aussie_84 Member Posts: 5
    #8
    I have your cancer
    Hi Erin,

    I have micropapillary serous carcinoma--just diagnosed in June. Mine is noninvasive, however. I hope you are doing well. If you go to my "page" I posted my story. I have 70% of my right ovary left--the cancer was found at stage 2c, but confined to my left ovary and pelvis. I have had surgery--no chemo-- b/c my doctor said my type was chemo resistant. I'm in complete remission as of now. I hope the same for you.
  • vanessamood
    vanessamood Member Posts: 54
    #9
    Low Grade Cancer
    When my cancer was found in January it was a IA. had a complete hysterecotomy
    and then 6 rounds of Carbo plus Taxol. Doctor was not sure if I would need chemo but decided that it was the best thing to do. After six rounds I was declared cancer free in August. Now I have to go for three month check ups. In two weeks it will be the first of those check ups. I think I* have had a harder time after the chemo was finished than during.
    Neuropathy and acid reflux, pain in legs and knees. The best to you and may your chemo be tolerable.
  • ptharp
    ptharp Member Posts: 190
    #10
    Does the A stand for low
    Does the A stand for low grade?
  • pascotty
    pascotty Member Posts: 174 Member
    #11
    https://csn.cancer.org/discussion/180810/low-grade-ovarian-cancer

    Hi. I had debulking 2022 ams only 2 chemo. Due to the fact it doesn’t respond. So I stopped. I am now following all natural paths. Read a book called. Cancer is not a disease. It’s a healing mechanism. Also. Check out Chris wark. The guy who beat cancer. And Jane McClelland. Who used repurposed drugs. I follow all these protocols. I won’t ever do chemo as it doesn’t cure anyone. It makes us all sicker. Destroys your immune system. And for some reason we all think this is okay Research Avastin. It is awful. They talk about this drug in the first book I mentioned. Cancer is a natural thing that takes part in your body. Please stop fearing it. Learn about it and then go your own path. Knowledge is power and it is a scary time. But does not need to be. This is my experience and not absolute advice. All the very best.

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