has anyone with upsc been treated with immunotherapy??

lindaprocopio said:

There's someone on the Ovarian Cancer Board who does that.
Maggie, try and post your question on the Ovarian Cancer Board here. Someone posting there has done quite a bit of immunotherapy (vitamin infusions and hydrogen peroxide infusions, etc.), and has been in a prolonged remission.

As far as hormone therapy, you definitely want to have a tissue assay done (perhaps from a needle biopsy; that's what I used) to see if your cancer is ER+ or PR+ (& as long as they're testing, HER2+). Hormone therapy can really hold you stable IF you are ER+ or PR+. If your cancer is ER- or PR-, the likelihood that hormone therapy will help is pretty low.

I am ER- and PR-, but if I can get a NED CT/PET scan ever again, we've talked about me trying hormone therapy as a maintenance strategy to try and KEEP me NED. I read a study where they combined tamoxifen and megace where you take both, and they had a success rate of something like 27% even for women that are ER- and PR-. So, even for that small %, if I can ever get NED again, I'd try hormone therapy to try and prolong my remission and to get a chemo break. But if I were ER+ and PR+, I'd be taking megace/tamoxifen NOW to get a chemo break NOW instead of taking carboplatin. You don't want to decide to do hormone therapy without knowing your odds of it working. & you need that tissue assay & whether you're cancer is fed by hormones or not.

Of course, I'M hoping that you have no visible cancer that CAN be biopsied!! Then you can stay on your chemo break and not take ANYTHING! (((((Maggie))))

lindaprocopio said:

I'm probably going to be taking tamoxifen/megace NEXT.
If you mom's cancer was estrogen positive (ER+) and progesterone positive (PR+), there's a better chance that hormone inhibiting drugs like megace and tamoxifen would be effective. But studies have shown that even ER- and PR- cancers sometimes respond to these drugs, although they can't really figure out why. During this 9 week chemo break might have been be a good time for your mother to try the hormone drugs, as they have very minimal side effects. My chemo oncologist IDEALLY wanted me to try them if I had a clear CT/PET to hold me in remission, but my gynecologic oncologist wanted me to be 100% out-of-treatment when I safely could, and that is what I did. I'm guessing your mother's oncologist will want her on Doxil or dense-dose weekly Taxol, or will keep her on the carbo/taxol as long as it is working for her. & honestly, that is what I would recommend if she has the strength and will to battle-on full steam ahead. But if she is still too beat up after the 9 week break, you could press the issue again, as tamoxifen/megace are pills and so much easier to tolerate, and may just be the thing that works for her. You won't know until you try. But, were it me, and carbo/taxol was still a proven effective drug for me, I'd return to the "known" cancer-killer, rather than roll the dice right now on something new.

But you do want to keep the hormone drugs in mind for a time when nothing else seems to work, or your mother needs a chemo break and is in a relatively safe position to take something you won't know will work. Just like any of the other treatments, some work for some people and some don't; and until you try them, you can't know what YOUR 'magic bullet' might be.

While I am waiting for insurance approval and going through the testing for the radioembolism, I am pretty sure I will be trying the tamoxifen/megace, since I have nothing to lose as I cannot take traditional chemo close in to this new procedure, and my cancer seems to have mutated into something chemo can no longer kill. If your oncologist beleives your mother has better options that she can tolerate, you want to be open-minded about his opinion. But if your mother gets into her next treatment line and her quality of life is unacceptable on the chemo, you may want to dig in and fight for her to try something less harsh. It's such a crap shoot. I have always balanced my treatment decisions with "Quality of Life" considerations and have been blessed with a cancer journey without pain, nausea, or any neuropathy or lasting side effects. You want to aggressive go after the beast, but always make sure the battle is acceptably tolerable. It's a delicate balance. (((hugs)))