I had a check up today, dx a year ago, and when I mentioned all the aches and pains, depression and hot flushes I was getting with Tamoxifen, the consultant prescribed Megace which is progesterone and supposed to help hot flushes. My head is all over the place and I got home then started to wonder if he meant instead of Tamoxifen as he mentioned stopping it (tamoxifen) for a month. I will ring the bc nurse tomorrow to confirm what he said but wondered if anyone else is on this as I never see it mentioned.
Megace is a very old hormonal treatment used for those who are PR+. Unfortunately, it has many side effects including causing people to put on a lot of weight. A few years ago, it was thought to be a good way to treat AIDS patients who had lost weight. Unfortunately Megace was putting on the wrong kind of weight and not helping to rebuild lost muscle, so they stopped using it on AIDS patients.
If you are also ER+, try getting a newer hormone treatment such as Arimidex instead.
I think Megace is being used as a last resort after all other hormone treatments have been exhausted and that is why you see so little about it.
Put “Megace” into a search engine and see what comes up.
Thanks for your reply. I am pre menopausal so can not take arimidex. Consultant seems to think that I am better off with my ovaries and getting some oestrogen than going through an early menopause.
Don’t mind at all Alison. I am 45, was dx at 44 but actually found the lump when I was 43 and it took me 6 months to pluck up the courage to get it checked. I am ashamed to say. Took my first Megace today and haven’t vomited or grown another head so fingers crossed. BC nurse upset me yesterday by saying that she had described me to the consultant as “a bit of a challenge” and she said she didn’t know what to do with me and consultant said that I mustn’t forget that I have a life threatening disease. Silly me. I had completely forgotten that!!!. Makes me wonder why they are always saying “had” and are now implying I still have it. They took a blood sample as I am bruising all the time so I suppose they are listening to something that I tell them.
Glad to hear the Megace was not as nasty as I expected.
Interested to hear that your breast care nurse described you as “a bit of a challenge” ! It implies she needs to change you in some way and maybe you are happy as you are? Did you ask her what wants “to do” with you?
I really disliked my breast care nurse so never speak to her. A while back BCC wanted a campaign for more breast care nurses until lots of people (particularly those with secondaries) said they also found their’s useless.
Typically, a breast care nurse talk to you very s-l-o-w-l-y with their heads slightly tilted to show their compassionate nature. If you seem angry, it never occurs to them you might be justified and need support rectifying something. Instead, they treat you as irrational, someone who needs to be calmed and they will support the hospital, the oncologist, whoever, without listening to you. “Have you got a breast care nurse?” is a phrase used by too many oncologists when they are bored answering your questions and want to ditch you.
Oh Holey, how right you are!!! mine always tells me she will ring me over the next two weeks when i go to see the surgeon or the onc, but she never does, so i have no expectations of her now!!!
Mine is very efficient and does always get back to me and I can ring her when I want but she turns into a completely different person face to face. She’s very nice but a bit off putting. Even my husband noticed this. I put it down to her being so busy. An example is, after surgery, she said “I run a breast cancer support group but i don’t think it’s quite you”. She wouldn’t say why. I have had a problem with depression and panic attacks. I would ring her in tears and she would say that it was “just the tamoxifen”. In the end, my husband rang the radiographers, explained how I was and asked if they could help. They contacted Mc Millan nurses for me and a lovely nurse visited me at home. She rang the doctors and demanding they give me anti depressants ( they wouldn’t entertain it beforehand. One said that he would give me 7 days of diazepam but that was it!!!). She diagnosed depression although I think it is the tamoxifen giving me the depression. Almost a year later, I still have bad days but couldn’t have coped without the “happy pills”. When I spoke to her a few months back and mentioned how I was feeling, she started telling me about how bc care could put me in touch with someone to talk to in the same position as me or I could see the physchologist attached to the cancer depts…Why didn’t she tell me this a year ago???
Found out this week that bc nurse has never had a hot flush, so she can’t really understand.
When I was on Tamoxifen (now on Arimidex) I had horrible hot flushes etc like you and so they put me on Megace as well. It definitely was to take the 2 together rather than the Megace replacing the Tamoxifen. It was a relatively low dose of Megace but did work very well - I still got some hot flushes but they were nothing like as intense. And I didn’t seem to get any other side effects from the Megace - put some weight on but then I gather that could have been the Tamoxifen anyway!
I suppose you need to know if your tumour/s were P+ first off with regards to the Megace.
If I were you, I would press the case for an oophorectomy. I did and it was a doddle and then off Tamoxifen and onto Arimidex thus doing:
* get you off Tamoxifen
* in doing that you reduce your chance of womb cancer cos Tamoxifen increases it to 10% which is high in my book
* getting your ovaries out means heaps less oestrogen in your body and thus reduces your chance of ovarian cancer to about 0.01% i.e. far less than the general population
* ovaries out also equals reduced chance of BC
* going on to an Aromatose Inhibitor will be “gentler” than Tamoxifen but, from what I’ve read, Arimidex (an AI) is also seen to be doing a better job than Tamoxifen
* one final plus point for dippy people - Arimidex is packaged like the contraceptive pill so the days of the weeks are marked!!! You don’t get that with Tamoxifen so you need a calendar with it
Thanks everyone for your replies. Kay, you have given me some hope on the old flush front. I actually feel ok at the mo…too early to tell as have only had 2 Megace pills but have no concentration at all and keep doing really stupid things. I also get half way through a sentence and give up as it’s too much effort. Even deciding which cat food to buy frustrates me… Think i need a good kick up the backside!!!
Dahlia
I agree about oophorectomy but I still want a bit of oestrogen in my body to prevent osteo porosis Or maybe I am misinformed on that. See consultant again in 2 months to report back on Megace so will ask then
Hi, Debbie. A friend of mine has been on Megace for years since she was pre-menopausal and is now post-menopausal. She has no other treatment and has had no side effects. She has a great figure and plays golf a lot so she’s got really fit. I met her at a Tai-Chi class for BC women and couldn’t understand what all the fuss was about!
As to you other gals and your breast care nurses - think yourselves lucky that you have them. Where I live, you’re very much on your own with breast care, well any care actually! I find the grumpiest and most offhand hospital staff avoid me, because I’m inclined to smile at them - I wouldn’t want their job but I’m not going to give them the satisfaction of a reaction when they project their stuff onto me.
Meanwhile, Debbie, just remember that its’ the patients that doctors and nurses describe as difficult or challenging that live the longest - so keep on asserting your needs and asking all your questions and querying all the answers - don’t you change one bit. Seems they’re determined to remind us they can’t cure our lousy cancer but we can’t cure their lousy attitude either. They can feel different from us because they don’t have our cancer and we can feel different because we don’t have their attitude. We and they just have to get on and live with these things as long as the doctor/nurse/patient relationship lasts and not let it affect what we are there for - treatment and recovery!
Hi All
I started having hot flushes during chemo this year and they’ve continued now I’m on Tamoxifen. I’m HER2+ and the onc has given me Clonidine which is working really well for me (although it did take a while to kick in). I’ve just looked at the Clinical Evidence site after reading Debbie’s post and see that Clonidine is mentioned, as are anti-depressants, as treatment for hot flushes but there’s no research that indicates that they actually work. Cancerbackup has lots of info on Megace and in its newsletter last year flagged up clonidine, anti-depressants and gabapentine as possible solutions. So, here’s hoping that the Megace works for you, Debbie, but if it doesn’t there are other options.
Loved the chat about the doctor / nurse and patient relationships. My patience has been sorely tried - Jenny, I couldn’t agree with you more!
Sarah
X
Thanks Sarah and Jenny. You both sound very wise. I totally agree with comments on bc nurses. When I read “Kelly’s Blog”, I am sure she said that she didn’t see a bc nurse until she had her WLE. When I was dx, the bc nurse was on holiday but they rang the nurses at a local hospital who spoke to me and gave me contact numbers. Something else I just remembered. A few months ago when talking to bc nurse she said " you took the dx news very badly didn’t you? ". Still trying to work out if she meant I should have put on a brave face. Lol.
Love
Debbie
Just to give you an update. After 2 days of Megace, all joint pains dissappeared but the hot flushes were horrendous. I was also almost suicidal and cried non stop for two days. A few days later, I developed the beginnings of Thrush. Been lucky enough never to have suffered from this before. After 10 days thought “enough is enough” and stopped the Megace. Two days on I feel tons better. I went to bed early and took a Nytol pill. I had the best nights sleep for ages and am convinced that the weepiness was, in part, sleep deprivation caused by night sweats. Today, I am actually cold for the first time since about March!!1 Maybe I have turned a corner??
Love
Debbie xxx
