Not curable but treatable

Have you had your cancer cells tested for ER+ and PR- ??
Hormone receptor therapy like tamoxifen and megace work best on cancers that are estrogen positive (ER+) and progesterone positive (PR+). I had a needle biopsy done (not painful, easy) of the metastasis in one of my lymph nodes and they were able to determine that I was ER-, PR-, and HER2-. THis type of information can really help guide treatment. If you are ER- and PR-, using megace or tamoxifen alone has only the tiniest percentage of a chance of working. So if you do not know for sure, definitely ask your oncologist if your cancer cells have been tested to see if you are ER+ and PR+. (Most of the more common & less aggressive uterine cancers are ER+ and PR+, but most of the more aggressive grade 3 uterine cancers like UPSC are often ER- and PR-. But every individual person's cancer is unique in this regard.)

Now, to add to the confusion, I read a study where tamoxifen and megace were given in combination, and for some unknown reason, were effective at stablizing disease in something like 33% of the women in the study who were ER- and PR-. The study admitted that they have no idea why. I needed to take a chemo break this summer in order to try radioembolism, an experimental procedure that has had some success in slowing down liver metastacis (my most pressing cancer problem). So I took a copy of that study to my chemo oncologist, and he put me on the combination of megace and tamoxifen cited in the study, just so I'd have some small chance of keep the cancer mets I have in 2 lymph nodes 'stable' for the 3 months I need to be off chemo in order to have the 2 radioembolism treatments.

Every day I take two 20 mg tamoxifen tablets. Then, in addition to the 2 daily tamoxifen tablets, every OTHER week (one week on, one week off) I add five 40 mg megace (megestrol) tablets to my daily pill count. You may want to bring up this combination and dosage to your oncologist if he says he is unsure whether you are estrogen positive or negative. I think I read that the 2 pills given together like this offset any danger that your body will up production of estrogen or progesterone in response to the pills. I have been on this 9 weeks now, and have no side effects, so this is an easy easy regime. Hope this is helpful to you.

Cler said:

Hello Linda,
I would be
Hello Linda,

I would be really grateful if you could post this study here or send me the link? I am also ER- and PR- but if this drug combo could help me then I'd like to investigate it. Due to my age, they have put me on estrogen only HRT which i am so nervous about. They think this is ok but I am not totally convinced.

Anyway, if you are able to post the report it would help me open this discussion with my doc.

Thanks!
Cler

I found the study I mentioned (in a saved email I'd sent!)
I double-checked to see if this study is still online, and it is:
(http://www.medscape.com/viewarticle/586334_2 )

Looks like I didn't remember the % correctly: it was 33% to 38% successful for ER+/PR+ ; and the combination tamoxifen/megace was successful 26% to 32% in ER- and PR- cancers. (Those success % are similar to other second line chemo options.) Here it is:

Tamoxifen Combined With Progestins. The Gynecologic Oncology Group (GOG) conducted two studies that combined progestins with tamoxifen using different schedules. This strategy was chosen to avoid the downregulation of PR that occurs with continuous treatment with progestin alone, the hypothesis being that intermittent treatment with progestin would permit tamoxifen to induce PR and thus enhance the effect of progestin therapy. In the first trial, patients received alternating 3-week courses of megestrol acetate and tamoxifen.[20] The overall response rate was 27%, the median progression-free survival was 2.7 months, and the response rate in patients with grade 1 endometrial cancer was 38%.

Patients in the second trial were treated with continuous tamoxifen plus alternating weekly cycles of medroxyprogesterone acetate.[21] The response rate was 33%,with a median progression-free interval of 3 months. Although these response rates are higher than those reported for progestins alone, the progression-free intervals and overall survival rates are similar. A correlative study to this second trial explored the relationship between hormone receptor status and response to the combination of tamoxifen and megestrol. Interestingly, response rates were high even in patients with estrogen- and progesterone-negative tumors (a response rate of 26% for estrogen-negative tumors and 32% for progesterone-negative tumors).[22] The toxicities, which principally were weight gain and thromboembolic events, were tolerable with both regimens of tamoxifen plus progestin.

References:

20: Fiorica JV, Brunetto VL, Hanjani P, et al. Phase II trial of alternating courses of megestrol acetate and tamoxifen in advanced endometrial carcinoma: a Gynecologic Oncology Group study. Gynecol Oncol. 2004;92(1):10-14.

21: Whitney CW, Brunetto VL, Zaino RJ, et al. Phase II study of medroxyprogesterone acetate plus tamoxifen in advanced endometrial carcinoma: a Gynecologic Oncology Group study. Gynecol Oncol. 2004;92(1):4-9.

22: Singh M, Zaino RJ, Filiaci VJ, et al. Relationship of estrogen and progesterone receptors to clinical outcome in metastatic endometrial carcinoma: a Gynecologic Oncology Group study. Gynecol Oncol. 2007;106(2):325-333. Epub 2007 May 25.