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06-09-2019, 10:14   #1
RosieLu
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Stage IV Breast Cancer - Hormome Treatment

Hi,

This is my first post to Boards. I never thought my first post would be to this forum.

My mam was diagnosed with Stage IV Breast cancer in June. She never showed any sign or symptom of being ill. It was caught by chance. I am heartbroken and devastated for her. She is doing so well and keeping so positive and I'm very proud of her. You would not think to look at her that there is anything wrong. But she really only has started treatment this week - no chemo, just hormone treatment.

I am wondering would anyone have any advice/stories on the hormone treatment she has started taking. No side effects have kicked in as yet. The drug is called Letrozole. I have looked it up online and was shocked to read people's reviews of the drug. They are all horror stories, with many people saying they couldn't cope on it and came off it as quality of life was more important than dealing with these awful side effects.

I couldn't find one positive review of this drug. I suppose I am hoping that people who have posted online are people that are struggling on it, but that there are many more who are fine on it so don't need to go online out of desperation!!

I'd love to hear from anyone who has gone through it or is going through it.

Thanks for reading!
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06-09-2019, 10:56   #2
looksee
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RosieLu, welcome to Boards, though I am sorry it has to be under such sad circumstances for you.

I am not familiar with the drug you mention though I have done a quick search for it. I did find some reviews, they did not appear to be quite as bad as you mention, though there are reports of side effects. Bear in mind that generally the side effects appear to be, probably unsurprisingly, similar to the usual menapause symptoms, which can be unpleasant. Also the lists of side effects given by the drug companies are usually alarming - even for the most everyday drugs. Please don't anticipate problems before they happen, give it a chance and encourage your mother to keep in close contact with her doctor. You are probably right about people with issues being the first to report them.

Please continue to take the advice of the medical professional supporting your mother, and I do hope for a very good outcome for her.

Mod: If other posters have any experience of the drug please feel free to share your experience, but be aware that you may not offer medical advice or suggestions as to how or whether the OP or her mother should continue with treatment. That is solely the responsibility of her medical professional.

Last edited by looksee; 06-09-2019 at 11:05.
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06-09-2019, 11:41   #3
RosieLu
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Thank you so much looksee, I appreciate that!

Yeah I would never pay too much attention to the lists drug companies give, as I know it has to be done. I didn’t mean to sound alarmist or panicky, I would be very cynical to reading things online and don’t generally jump to conclusions but it was just the amount of reviews on various websites that shocked me a bit regarding this.
I haven’t said anything to my mother and she’s doing so well for now. I’d never worry her over something that might not even happen. She knows the symptoms could be like menopause and this doesn’t bother her at all, she’s been through all that!!
But I was just dying to hear other similar stories to put my mind at ease or be slightly prepared for what’s ahead!
We are very much on board with the medical team, they’ve being great, they really have...couldn’t ask for better and my mother will definitely keep in with the doc too.
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06-09-2019, 12:11   #4
looksee
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You are welcome RosieLu, I do realise you have a very sound approach to the whole sad business, it is a lot to cope with. I have to do the 'mod' bit as we cannot give legal or medical advice, but I do hope you get someone who will be able to give you a bit of reassurance.

All the best, take care of yourself as well as your mother and I hope she is able to cope without too much distress. You are very welcome to come here and discuss or just vent, its a very quiet forum but sometimes it helps just to get it out of your system.
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14-10-2019, 23:03   #5
Obvious Desperate Breakfasts
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RosieLu, PMed you!
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21-01-2020, 01:42   #6
coffeepls
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Hi RosieLu
So sorry I don’t pop by and read this forum more often.
How is your Mum? I realise it’s been a couple of months since you asked about letrazole.
I have stage IV breast cancer and I have heard of letrazole. I’m on another type of aromatase inhibitor called anastrozole. If you google that you’ll find its a similar enough drug - obviously not the same one, but similar.
Anastrozole seems to be doing its job for me to date (3 years on it) and I am now 5 years since my diagnosis. I too was diagnosed as stage IV from the get go. Breast cancer that has travelled to both my lungs. I had some surgery for one of my lungs, but that was all.
I do have other drugs I take, but the anastrozole is the hormone one.

Don’t despair at what people write about drugs on the internet. It is always more likely that people will write about the terrible side effects and adverse reactions. Not too many will say ‘nothing to report, this is obviously working’.

Hope this post finds you and your mum doing well. PM me if you want to.
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