has anyone with upsc been treated with immunotherapy??

maggie_wilson

sisters,
i've read that a number of women with ovarian cancer have been treated with immunotherapy. has anyone with upsc been so treated? anyone at all on this uterine cancer site been treated with immunotherapy? also wondering about hormonal therapy for upsc, or any of the other uterine/endometrial cancers.

thanx,
maggie

lindaprocopio

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))))

maggie_wilson

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))))

linda, thanx for your response, as always

i am now having an assay done on my original tumors, hopefully they'll be able to use the results, given how long ago it's been, already. i asked specifically for her 2, but hopefully they'll do the er/pr plus or minus as well. i will check out the ovarian site, since i do know women have successfully been treated with immunotherapy. i'm having my ct/pet scan today, but won't know results for almost two weeks because my doctor is on vacation. i am in the process of setting up a second opinion with a medical oncologist at stanford, recommended by commonweal for treatment options once i know more. this doctor was so responsive, and so nice, i thought i'd just choose him amongst the other two possibilities at ucsf. plus, he came so highly recommended. as far as i'm concerned, doctor choice is a crap shoot as well. just got a bill from the hospital where i had my surgery for $29,000! can you imagine? we didn't sleep all that well last night. turned out it was an error, which of course we thought it could be, but still, it was a shock. just what we needed.

linda, thank you so much for your info re: er and pr; it's always good to read your posts and become more knowledgeable--

i'm always hoping for the best for you.

love you, and sisterhood,
maggie

maggie_wilson

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))))

LINDA,

it turns out that i'm er+ pr-, and have been prescribed tamoxifen for a month. if my ca 125 is same or lower, will probably stay on it. if higher (probably), then megace will be added. even if only 27% chance of working, still seems worthwhile to try. tested also for her2, and am negative. they're doing a fresh tissue assay of what chemos would work best, and i was told they have 16 different combinations they're working on. beats hit-or-miss chemo, methinks, especially if a few of them really turn out to be effective. we have to pay out-of-pocket for this assay ($3500), which, when we receive the denial for coverage from the insurance company, i will appeal, and send along a couple of letters of medical necessity from my doctors, along with my own. can't hurt. the woman i've been speaking with at the lab where they're doing the assay said that she'd heard of blue shield actually covering some assays, so that was encouraging. it's pretty outrageous that we should have to fight for this coverage!

sure hope you're doing ok. i'm always thinking of you, and hoping for the best.

hugs and sisterhood,

maggie

denyingarea

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))))

Linda - Megace/tamoxifen to get a chemo break?
Linda,
Can you explain a little more what you mean that if you were ER+/PR+ you would try taking mgace/tamoxifen instead of carbo? My mom is UPSC IVB and after 7 rounds of carbo/taxil, she's normal CA-125 but the CT is still showing residual disease. When I brought the issue of ER/PR testing up (what feels like ages ago) during diagnosis in October, the doc kind of poo-poo'd ER/PR testing for uterine cancer. But somebody in the earlier hospital ran the test on one of her ascites draws when they suspected ovarian cancer. It was ER+/PR-. She's currently on a 9-week chemo break to heal from some complications and see if the last round of chemo did the trick. Now I'm wondering if her CT in 9 weeks still isn't clear whether just ER+ is enough to talk about hormone therapy instead of launching into more chemo right away. If she can't be NED, my mom would ideally want another 3 months on top of this nine week break to gear up for more chemo. (It's just been a really long, hard, many hospitalizations road so far.)

lindaprocopio

denyingarea said:

Linda - Megace/tamoxifen to get a chemo break?
Linda,
Can you explain a little more what you mean that if you were ER+/PR+ you would try taking mgace/tamoxifen instead of carbo? My mom is UPSC IVB and after 7 rounds of carbo/taxil, she's normal CA-125 but the CT is still showing residual disease. When I brought the issue of ER/PR testing up (what feels like ages ago) during diagnosis in October, the doc kind of poo-poo'd ER/PR testing for uterine cancer. But somebody in the earlier hospital ran the test on one of her ascites draws when they suspected ovarian cancer. It was ER+/PR-. She's currently on a 9-week chemo break to heal from some complications and see if the last round of chemo did the trick. Now I'm wondering if her CT in 9 weeks still isn't clear whether just ER+ is enough to talk about hormone therapy instead of launching into more chemo right away. If she can't be NED, my mom would ideally want another 3 months on top of this nine week break to gear up for more chemo. (It's just been a really long, hard, many hospitalizations road so far.)

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)))

susafina

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)))

immunotherapy
Hi All,
After my treatment my team started me on an aromatase inhibitor orally. I started on Arimadex daily. My docs pointed out to me that there are some new suudies being done on treatng uterine cancer pts. with this for one year.. I was ER+ and pr+. I was apprehensive about starting on this drug since there are some side effects but so far so good. I was curious if anyone else was presented with this.
SUE

Ro10

susafina said:

immunotherapy
Hi All,
After my treatment my team started me on an aromatase inhibitor orally. I started on Arimadex daily. My docs pointed out to me that there are some new suudies being done on treatng uterine cancer pts. with this for one year.. I was ER+ and pr+. I was apprehensive about starting on this drug since there are some side effects but so far so good. I was curious if anyone else was presented with this.
SUE

Sue I took Arimadex
I took Arimadex for 2 months before I went back on chemo for a recurrence. I do not know if I was ER + or - or pr + or -. The doctor only gave a 10 - 20% chance of it stabilizing my CA 125 which was 1500's. It did not stabilize the CA 125. It went up while on the Arimadex. I had not side effects whild on the Arimadex.

I felt it was worth a try, to be off of chemo for another 2 months. I am not sorry that I tried it. Hope it works for you. In peace and caring.