Megace Users only-step up please!

naturegirl2

Hi,

Didn't find a sole thread for Megace users only so starting my own. I'd like to know if there is anyone taking Megace exclusively for Stage IV Breast Cancer and how they are doing, how long they have been on Megace, etc. etc. Side effects, tips, suggestions would be most helpful. Thanking all in advance.

naturegirl2

Anyone out there taking Megace exclusively for Stage 4 BC? Hmmmm, would love to hear what you have to say please. My previous protocol was Ibrance/Letrozole that failed.

Longtermsurvivor

Hi NatureGirl,

I took Megace for hormone-positive advanced breast cancer back in 1995 - not currently!

At that time there were no AIs (aromatase inhibitors) and my cancer had continued to progress while on tamoxifen.

I think I took the M. for about 4 months and the cancer progressed, so I went on to radiation.

It's now used mainly as an appetite stimulant for people with advanced cancer and with AIDS wasting. Back then it had a reputation for causing much weight gain - I didn't have that. Just an icky feeling that I was willing to accept for stability or disease response. Since I got neither, I got off of it.

There aren't many recent reports of Megace ( megestrol acetate) in MBC, but I found this one small, 2-year-old study from Brazil that might interest you. Note NSAI is femara/letrazole or arimidex/anastrozole.

Activity of megestrol acetate in postmenopausal women with advanced breast cancer after nonsteroidal aromatase inhibitor failure: a phase II trial.

This is an abstract. The article's free full text is at http://annonc.oxfordjournals.org/content/25/4/831....

Bines J(1), Dienstmann R, Obadia RM, Branco LG, Quintella DC, Castro TM, Camacho

PG, Soares FA, Costa ME.

Author information: (1)Department of Medical Oncology, Instituto Nacional de Câncer, Rio de Janeiro, Brazil.

Ann Oncol. 2014 Apr;25(4):831-6. doi: 10.1093/annonc/mdu015. Epub 2014 Mar 10.

BACKGROUND: As novel treatments carry substantial price tags and are mostly cost-prohibitive in low- and middle-income countries, there is an urgent need to develop alternatives, such as off-patent drugs. Megestrol acetate (MA) has a longstanding history in the treatment of breast cancer, but recently it is being used less often due to the advent of newer agents.

PATIENTS AND METHODS: This two-stage phase II trial evaluated the antitumor activity and toxicity of MA in postmenopausal women with hormone-sensitive advanced breast cancer who had experienced disease progression on a third-generation nonsteroidal aromatase inhibitor (NSAI). Eligible patients had

metastatic breast cancer treated with a NSAI with at least 6-month progression-free survival (PFS), or relapse after ≥1 year on adjuvant NSAI.

Patients received MA at a single daily oral dose of 160 mg. Primary end point was clinical benefit rate (CBR).

RESULTS: Forty-eight patients were enrolled. The CBR was 40% [95% confidence interval (CI) 25% to 55%], and the median duration of clinical benefit was 10.0 (95% CI 8.0-14.2) months. The median PFS was 3.9 (95% CI 3.0-4.8) months. The most common grade 3 adverse events were anemia (2%), dyspnea (2%), fatigue (2%), musculoskeletal pain (4%), deep vein thrombosis (10%), and weight gain (2%).

CONCLUSIONS: This is the first study to prospectively evaluate the efficacy and safety of MA in postmenopausal women with hormone-sensitive disease progressing on a NSAI. MA has demonstrated activity and acceptable tolerability in this setting, and therefore remains a reasonable treatment option in a cost-sensitive environment. These results also provide the background for further evaluation of progestins in the treatment of breast cancer.

CLINICAL TRIALS: local trial number, related to the approval by the IRB: CEP 108/06.

PMID: 24615412 [PubMed - indexed for MEDLINE]

Excerpt from the article:

efficacy

There was no complete or partial response. Nineteen patients had SD for >24 weeks, for a CBR of 39.6% (95% CI 25.2–54.9%), and the median duration of clinical benefit was 10.0 (95% CI 8.0–14.2) months (Table 2). Median PFS for the overall patient population was 3.9 (95% CI 3.0–4.8) months (Figure 1). At a median follow-up of 51 months, all patients had disease progression. Immediate subsequent treatment consisted of chemotherapy, hormonal treatment, and no further systemic therapy for 54%, 31%, and 15% of patients, respectively. The most common endocrine agents in sequence were exemestane (36%) and fulvestrant (36%). At the time of this analysis, 36 patients had died, and the median OS was 19.4 (95% CI 15.1–23.6) months (Figure 2).

This may not be relevant to your decision, because my short, sad story is over 20 years old and most postmenopausal hormone-positive MBC folks now have more treatment options - the AIs, faslodex/fulvestrant, Ibrance/palbociclib and Afinitor/everolimus. Megace isn't used often any more - http://www.breastcancer.org/treatment/druglist/meg...

Naturegirl, good wishes and good luck with your new treatment with this old drug.

sending warm healing light, Stephanie

naturegirl2

Longtermsurvivor, first, thanks for taking your valued time to respond to the Megace thead. I am most thankful for you my friend! You know I admire you for all that you have gone through during your years with various treatments. You are one person I look up to with all your zest for life etc. etc.

My story - I was initially on Letrozole for 15 months shortly after my stage 4 diagnosis(back in November 2012) until Letrozole failed. My oncol then put me on Afinitor/Aromasin for some 8 months I think until that failed, then I went on Faslodex shots exclusively for 10 months until that failed. He then put me on Ibrance/Faslodex that didn't work after 4 or so months, then Ibrance/Letrozole for 2 months that obviously had failed. So I'm no stranger to AI's. So my oncol. treatments used the latest and greatest. For some reason, my oncol. wants me to try Megace to see how I do as he said sometimes this med can contain cancer cells but didn't know the whys. He did say it was an old drug during the time frame of tamoxifen. I was never on tamoxifen. He also told me Megace is used to treat appetite surpressed Aids patients but in mega doses. I am taking one tablet, 40 MGs, 4 times a day. And yes, he mentioned weight gain. I'm glad to read you did not have that as I gained some 12 lbs over the last year and certainly do not want to gain any more weight. Thanks for the 2 year study with references from Brazil info.

Thanks again Stephanie for your response and well wishes. I am hoping and praying Megace is the magic bullet for me, a safe med to take as well as minimal to no SE's. Will keep y'all posted.

If there is anyone who may want to contribute to this thread, please feel free to.

Longtermsurvivor

Hi Nature Girl,

Thanks for receiving my submission...I realize it's totally out-of-date and likely irrelevant.

If I were in your shoes and wanted to stay the hormonal route to the end-of-the-line, I'd probably press for Tamoxifen, since you've never had it and many women have had good and long term responses to it. If you still have your uterus, be aware of risk of endometrial cancer. And if you've a tendency to blood clots, it might not be the drug for you.

I'd also look at estradiol 6 mg daily, not 30 mg daily DES which used to be a standard of breast cancer care before Megace and Tamoxifen.

Lower-Dose vs High-Dose Oral Estradiol Therapy of Hormone Receptor–Positive, Aromatase Inhibitor–Resistant Advanced Breast Cancer

A Phase 2 Randomized Study

FREE Full Text!

Matthew J. Ellis, MB, BChir, PhD; Feng Gao, PhD; Farrokh Dehdashti, MD; Donna B. Jeffe, PhD; P. Kelly Marcom, MD; Lisa A. Carey, MD; Maura N. Dickler, MD; Paula Silverman, MD; Gini F. Fleming, MD; Aruna Kommareddy, MB BS; S. Jamalabadi-Majidi, DMD, MPH; Robert Crowder, PhD; Barry A. Siegel, MD

August 19, 2009

http://jama.jamanetwork.com/article.aspx?articleid...

I had a very good time with 2 mg daily estradiol after Femara, Aromasin and Faslodex (have never done Afinitor or Ibrance). The estradiol resensitized the cancer to anti-hormonal treatment and my third time with Femara seems to be good for my body and bad for the cancer in and around my lung.

I also have been taking testosterone (topical androgel) for a while. At first for its possible anti-cancer, hormone scrambling effects. But now for cachexia - muscle wasting - and strength.

Therapeutic Activity of Testoterone in Metastatic Breast Cancer

March 2014

http://ar.iiarjournals.org/content/34/3/1287.abstr...

I'm sure there's more out there on testosterone, just can't find the needle in the haystack now.

Naturegirl, if you decide to move on to chemotherapy starting with Xeloda, I was assured that it can be taken in very small doses, important for us sensitive types!

Hope this is somewhat helpful for plotting your own course!

warmest healing regards, Stephanie

PS, be sure to search the bco archives for Megace. I noticed that GatorGal was taking it. Maybe worth PMing her?

naturegirl2

Once again, big thanks Longtermsurvivor. I'm really not one to plot my own course with regard to BC treatment but rather put my faith and trust into my oncol. of 25 years come next month. I don't think it's up to me to decide if I want to go the hormonal treatment route or not. I'm not sure what he has in mind for me and I dare not ask him. LOL But I will keep in mind what you said about tamoxifen or estradiol, and who knows, it may be his next med for me. I had a partial hysterectomy way back when so no uterus. I have not had blood clots that I know about so hopefully am not sensitive to that but I may ask my oncol. if he thinks I should take a baby aspirin each day since I am taking Megace since he did mention the risk of stroke is a big higher than what I am already experiencing. He did tell me not to worry that I am no way near danger with my BC at this time. He also knows I'm adamant about chemotherapy and he once said they are many more options than that. Thanks again Longtermsurvivor. That is interesting that you went three different times around with Femara. I will try to contact GatorGal.

Longtermsurvivor

Hi NatureGirl,

Happy anniversary!

Next month, I'll have been with my oncologist for 24 years and I'm so very, very grateful for him and our relationship. I've questioned him the whole time and brought up many possible treatments along with documentation. What we've done as a team is unbelievable.

Makes sense to ask about the baby aspirin to reduce stroke risk, though I doubt there are many large studies to assess it. It seems from my reading that Megace is used for appetite stimulation more than MBC these days.

Keep up your good healing and collaborative work, dear NatureGirl.

warmest healing wishes, Stephanie

naturegirl2

Hi Longtermsurvivor, yes, it's so crucial to have a good oncol. That is amazing y'all have collaborated and it's been successful!

I have cat scans this coming Friday and see my oncol. for results that following Monday. Hopefully the Megace is aleady doing it's thing and hope to see a good cat scan. I had taken cat scans April 5th so I don't think he expects much change from that one, but, those cancer antigen levels were out of sight, particularly the last month, so, we'll see.

I will also ask him what he thinks to incorporate a baby aspirin daily and, how long doe she think Megace will work , I'm sure he has a guesstimate. Anyway, Longtermsurvivor, I have made notes of what you mentioned about tamoxifen and estradiol. Looks like he wants me to go the way of hormones so if that is what he thinks, that is what I will do. I just want to be safe in these treatments though.

suems

I had a brief brush with Megace a few months back. In Jan 2015 I was diagnosed with ER/PR +, HER- IDC, with mastectomy and removal of 22/24 nodes. Post surgical scans showed Stage 4, all in bones. I was put on Tamoxifen, which did not stop progression, so was switched to Arimidex in November. Arimidex was stopped in February due to side effects (chronic joint pain and unrelenting hot flashes), along with more progression. These symptoms subsided when I stopped Arimidex, and I was then put on Megace.

I only took it for 3 days. I spent those 3 days in bed with severe pain in all my joints and hot flashes which lasted hours. I could not function, and slept when I took enough pain relief. I can't vouch for appetite or weight gain, as I was too ill to eat.

6 weeks after this disaster, I had a post-menopausal bleed, which has been put down to a combination of Tamoxifen causing a build up of the endometrial lining, and a trigger from the progesterone Megace. It has not happened again, and hopefully has done no permanent damage.

I still don't understand why a PR+ person was given artificial progesterone, and have now been told that hormone treatments don't seem to work with me. (Duh, ya think?) My ER/PR status has never been re-checked since surgery, and my MO says there is no point in bothering.

My cancer continues to progress, and is now in my liver. I am now on Chemo, which will hopefully slow things down at last.

Hopefully my experience is not typical (whose is?), but I decided to add my experience to this thread as a possibility to be aware of.

All the best,

Sue.

naturegirl2

Thanks suems for your valued input! Wow, I am so sorry you had all those troubles with Tamoxifan, Arimidex and then Megace. I' wondering if the build up of Arimidex, then quickly changed you to Megace had something to do with your side effects, ie. joint pain, severe hot flashes etc.?

Well, I sure am hoping my oncol. knows what he is doing. I've never taken hormones for treatment of BC, ever, and I was diagnosed back in 1991. So, maybe he thinks it is an avenue that will help me. I just don't want him going and adding stuff, ya know? That is where the problem comes in sometimes. We'll see I guess. I've been on Megace a little over one week, and have more than usual hot flashes, but manageable, a little joint pain but I try to work through that with exercise, all manageable, thankfully and luckily. Thanks again Sue for sharing your Megace experience. Good luck to you and hope you feel better soon.

naturegirl2

Oh, one more thing, no appetite increase, yah so far after 9 days on Megace!

Misstic

Hello NatureGirl. I take Megace now for a year and a half. First my oncologist gave it to me during the chemo because I had awful hot flashes which altered terribly my quality of life. I even couldn't sleep anymore: one hot flash every twenty minutes, all my body wet. Several times, I fainted because of the intensity of my hot flashes. After the chemo, my oncologist continued it.

Megace inhibits the testoteron in your body and so blocks the aromatization of it in oestrogen.

I had 4 scans since i take Megace and everything is OK.

I have two sides effects with Megace: uge appetite (20 pounds gain) and no more pubic hair (which is not so bad). I just have begun a diet.

naturegirl2

Misstic, thanks for your response regarding Megace. Are you stage 4? Wow, you really had a bad bout with those hot flashes. That is great that you had 4 scans since taking Megace and everything is okay! I have to say I had no noticeable side effects from taking Megace of yet. I'm been on on Megace since June 10th, 2016, so a little over 3 weeks I've been on it. Thanks again Misstic, and good luck!

Longtermsurvivor

HI Missstick,

Just wondering if you took the Megace for metastatic breast cancer or the unwanted effects of menopause.

Also wondering what the long term game plan is - it's a potent drug and use should be monitored over time - not just for mets, but for its other effects on the body.

https://www.drugs.com/pro/megace-es.html

Naturegirl, fingers crossed you find your helpful meds for your increasing mets.

warm healing regards, Stephanie