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What and when- hormonal maintenance therapy?

Posts: 7
Joined: Apr 2019

Stage 4B. Scan after 3 carbo taxol NED. Scan after 6 carbo taxol NED. 6th cycle completed March.

ER positive and PR positive. MSI stable. Grade 2. Type 1.


Please advise per your experience:

1. Should hormone therapy begin now or later? When?

2. What medicines?


Posts: 1160
Joined: Jun 2016

Different doctors have different opinions on how to do things, so these are really questions you should be asking your doctor.

I was 90% ER and PR positive (strong ER and moderate to weak PR). I was taking Metformin which has been shown to strengthen PR activity and my original gyn-oncologist put me on Megace about a month after I finished treatment for prevention of recurrence. Megace is useable for prevention or treatment of advanced stage or recurrent endometrial cancer and I am a Stage 3a, grade 3 endometrial adenocarcinoma.

My new gyn-oncologist at Dana Farber feels that using Megace for prevention is an old-school practice and would save it for recurrence. I didn't fight him about it because prior to my move my other oncologist and I were also discussing discontinuation. 

It's really hard to feel secure about your cancer when treatment ends. Going about your life again with the possibility of recurence a dark cloud hanging over your head is not easy and you want to feel like something is still being done to prevent that. It was easy to take Megace compared to chemo and radiation, but it is not without drawbacks, especially if your weight, diabetes, or high bp was an issue in your life before cancer. It is not a permanent solution for remaining NED, but given that you are a stage 4, it's worth considering the pros and cons of it with your doctor.

Posts: 274
Joined: Oct 2017

I was very strong ER positive. I'm on an aromatase inhibitor - Letrozole. I started about a month after I was done with chemo. Main side effect is bone pain, but the Dr had me start Vitamin D since that is supposed to help. I don't have any bone pain, or any other issues with the medicine.

Tamlen's picture
Posts: 323
Joined: Jan 2018

I'm Stage IVB, completed chemo last fall. I'm ER+ and my onc started me on an aromatase inhibitor about a month after chemo ended. My scan a couple of months after that showed stable disease (I only have nodules in my lungs -- I'm a little bit of a weird stage 4), but I consider my scan coming up next month to be the real test as to whether the AI is having any effect. Onc wanted to start with an AI because she feels it's got the least quality-of-life side effects with the biggest likely impact, and we can save other options for later if the AI doesn't work.

I started on Arimidex (anastrozole) but after three months I was in so much constant pain in my joints and muscles (a side effect) that I couldn't function, so my onc switched me to Aromasin (exemestane). I've done much better on the Aromasin -- achy joints like an old lady (I'm 56) but not so much that I'm in constant pain. So far no hair thinning, insomnia, or hot flashes commonly associated with AIs.

Posts: 316
Joined: Oct 2017

My tumor was mildly ER/PR positive (initially Stage 2, Grade 1 and 3 months after hysterectomy, recurrence in ovaries and omentum so I have either recurrent/advanced endometrial cancer or Stage 4B) I started Megace (40 mg x2 /day) right before the debulking for the recurrence, continued throughout chemo + another year after the end of chemo. I stopped afterwards. Like MABound, my surveillance oncologist questioned the value of continuing. My original oncologist thought since it is a drug I tolerated well, I should be on as long as I needed. 

Best of luck!

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