I haven had initial surgery, debulking surgery and 6 rounds of chemo therapy. I have been out of treatment for 15 months, but my CA125 has been gradually rising - never got lower than 61, rose to 161 in June. I was started on a double dose of Tamoxifen, with the chance that it might lower the CA125 temporarily. After 5 weeks on it, I got a new CA125 - 723 - I was shocked that it went up this much. Does anyone have a similar situation, or know of Tamoxifen having a reverse affect?
Yes, i had borderline ovarian cancer for 3 years and my ca125 started going up unexpectedly from 12 to 66, then after starting tamoxifen it more then doubled to 150 but not only that the histology changed from borderline to invasive resulting in a radical hysterectomy and debulking and now am having chemo. I honestly believe it is what caused 27 tumours to start growing out of nowhere. Tamoxifen induces a medical menopause and i wish i had of been better informed as we are all different and hormones are such touchy things- I dont think they have done enough research into tamoxifen and ovarian cancer yet, especially showing success. It is mainly used for breast cancer.
I am sorry to hear of your increase, I would def be stopping the tamoxifen until you know a little more. Please keep us posted. Best of luck x
I haven't used Tamoxifin myself yet, but after my surgery in a couple of weeks, my oncologist will be putting me on it as my low grade tumors are estrogen receptive (and Tamoxifin is an estrogen blocker)
Why did your doctor put you on that? Have you had your tumors tested before for estrogen receptors? I'm just surprised that they would use a hormonal treatment before putting you on a second line chemotherapy.
Good luck with everything...
At my cancer center they try hormone blockers on everyone who has NED and a rising CA-125, even if they haven't been tested for hormone receptors. Albeit they don't use Tamoxifen. Hormone blockers may stop the cancer from progressing, and they say if it doesn't, what did you lose? My center uses the aromatase inhibitors such as Femara because they said they are seeing better results with it and they are a little safer. Sometimes it will delay chemo for a little while, sometimes a long while.
Another scenario when they use estrogen blockers is for someone who has a low-grade cancer and low volume disease. Low-grade cancers tend to be the most hormone receptor positive and people with that type of cancer have a good shot at it working for them when chemo does not.
So for high grade cancers, the AI's are used like a bridge between chemos. If it works for you it can keep you off chemo as long as possible. For low grade cancers, where chemo doesn't really work that great at all, it is used as a bridge as well, but the chances of that bridge being a lot longer are much much better. The bridge in the low grade case can sometimes be years and years and years.
Just to add to what Lauren said regarding tamoxifen vs. other AI's, they do work differently in the body. Tamoxifen works by blocking the body's use of estrogen, whereas AI's reduce the amount of estrogen present in the body. In studies of breast cancer patients, AI's have proven to work better than tamoxifen in preventing recurrence, and there are far fewer serious side effects with AI's than with tamoxifen, too. Tamoxifen can cause blood clots, and stroke..and endometrial cancer. But that's one thing most of us don't have to worry about. AI's have their own risks, too, including bone loss, and joint stiffness and pain. Although AI's seem to be better at preventing recurrence in estrogen related breast cancer (I've not found a whole lot on their use with ovarian cancer, although my own experience is that it is working to keep me stable), cost can be an issue. Tamoxifen is a generic drug, and AI's are not.
I said all that to say this: If tamoxifen doesn't work for you, and you are estrogen receptor positive, it might be worth it to try a aromatase inhibitor.
I was put on tamoxifen 6 months post completion of my first chemo (cisplatin/taxol). At that time, my CA had risen to 107 but my scans were NED. Within 6 months, my CA was down to normal levels, but by the next month (7th month), the CA started rising again and continued to rise for one year before we started current chemo.
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