Any Tamoxifen threads?

[Fuckmyliferightnow]

Hi,
I'm due to start taking Tamoxifen this year and wanted to know if there were any active threads at the moment. I'm sure I've seen older threads but I can't find any.
TIA.

Anyone?

Aside from the on going cancer thread( which does mention Tamoxifen a lot) no theres nothing. I would be quite interested. I was due to start it last year when my Radiotherapy ended, but I have Scleroderma( an auto immune disease similar to Lupus)and my Oncologist said it would make my illness flare badly,maybe even on a permenant basis. She also said it only has a 4 percent success rate,i was really shocked at that ! Shes left the door open for me to change my mind, but I havent as yet. I would be interested to hear the experiences of people, esp those with auto immunes.
Whats your thoughts on it @Fuckmyliferightnow ?

Hi,
Sounds like a complex issue. 4% doesn't sound like much does it?

I'm sure I've seen threads that have TAMOXIFEN as the main title, I just can't find them. Oh well!

I'm quite terrified of that drug, more so than chemo tbh and I've had a rough time.

What do you think you'll do?
I haven't really been given an option.

The tamoxifen thread turned into the general cancer thread some time ago as people arrived on it with cancers other than breast. Some of the posters have been around for years though and there’s a lot of knowledge and support there. I’ve not been on it myself for some time but it saved my sanity. I took tamoxifen for a couple of years.

Just saying I’d be interested too.

I've been taking Tamoxifen for 2 years now OP, please ask me anything.

I did ten years on tamoxifen. I also happen to have autoimmune disease.

I had a couple of weeks of mild menopausal type symptoms- a bit of flushing, a bit dry skinned, periods stopped completely after two months never to return (but blood testing showed not menopausal so couldn’t swap to Arimadex).
I thought it would be a big deal and it wasn’t.

The success or otherwise varies depending on the individual circumstances.
You should have been shown your prognostic indicators for your situation. That’s the likelihood of recurrence and death at five and ten years with the various treatment options. The five and ten years are just statistical key outcome measures. You can discuss which options will work best for you in terms of treatment and decide whether you want the potential side effects for your percentages.
It helps decide between lumpectomy and mastectomy, chemo or not, radio or not, hormonal therapies etc.
It’s called adjuvant online. Your hospital may use a different version.

I found the prognostic indicators really reassuring.

You always have an option. You don’t have to consent to anything.
That said, it would be foolish to ignore expert advice and treatment algorithms.
What are you worried about specifically?

@Redannie118
I'm interested to hear how you got on with your radiotherapy with you having scleroderma. I have scleroderma too and my radiotherapy was cancelled because they were worried about the scleroderma causing problems with the healing and then long term. Whilst I'm ok at the minute it does worry me that I didn't have the recommended treatment. Luckily I have an appointment this afternoon with a rheumy who is an expert on scleroderma so I'll see what he says, but i fear we may have missed the boat regarding treatment.

@GingersRum. Hi im going to to DM you so not to clog up this thread :)

Hi,

I'm specifically worried about the pain associated with it and early menopause.
I'm having chemo now and I'm much more short tempered than normal, I'm usually very patient and chilled even when unwell.
My periods have stopped which actually make me quite sad, I'm only 42 and not ready to grow facial hair just yet 

@DrudgeJedd how has it been for you so far? Have you been able to live a normal life with these meds?

@CherryRoulade that's interesting, I thought stopped periods automatically meant you were post menopausal.

What also upsets me is I won't be able to use HRT to help with any symptoms down the line, yet all my friends will be able to breeze through that part of their lives more easily.

I know I will need it but it overwhelms me and makes me feel quite resentful.

No, I had a bit of a moment when I had a blood test pre-starting Arimadex; I had assumed I was post menopausal too. No periods for about five years but still hormones wandering around.

I have to say, Tamoxifen was the best way ever of going through the menopause - apart from a short spell of getting used to it (skin drier etc) I had no other symptoms when friends had months and months of discomfort. I had it easier on Tamoxifen than many on HRT; it was brilliant.

I’m due to start tamoxifen soon but I’m finding it difficult to find much that’s recent. Pain - what pain! I’m only 6 weeks post chemo and beginning to feel a little bit more human! I don’t want more pain!

Am having herceptin and onc is going to discuss tamoxifen at my next treatment. I’ve also got 5 weeks of radiotherapy to fit in somewhere. I feel like part of an experiment!

ElaineMarieBenes It is a bit trying at the time but you’re almost on the home straight. Five weeks and the appointments will dry up. It’s lovely to know your through it all and can await eyelashes with excitement when the radio finishes.

I’ve been on tamoxifen for eight years or so. I’ve suffered from minor hot flushes, but not too bad.

I seem to recall that it reduces your relapse rate by half. So if ten percent of people would have cancer re-occurring, then with tamoxifen, only five percent would have a relapse.

@CherryRoulade that's a positive. I need to hear things like that to stop me panicking about it.

Re the pain, for me it was joint pain, particularly knees and feet. It’s a common side effect and one of the things that can make women decide to stop taking it. However it was never bad enough for me to consider that. I also had night sweats and hot flushes and my periods stopped. It didn’t put me into menopause however. I would urge you to go onto the general cancer thread, you will get lots of information and support there. Life did return to normal on treatment, creaky knees were a small price to pay and are better now.

I think the joint pain from chemo was so strong two days after the last three cycles of docetaxol that anything else would feel mild forever more.

I didn’t find chemo too awful, but did discover a liking for gin, tonic and ormomorph at bedtime for two nights after each of the last three rounds.

My experience is very similar to CherryRoulade I was 51 with no meno symptoms when I started taking Tamoxifen, had about 6 months of hot flushes & vaginal dryness then feeling absolutely fine.
Good luck with everything OP it does get better.

I just feel 42 is quite young to be putting up with it all.
Obviously I have no choice but I recently ended a long term relationship and was looking forward to enjoying a few more years of feeling free, young and healthy and maybe even meet someone. But this has got me thinking that the meds will blight the rest of my 40's, making sex crap and in pain all the time.
I read a lot of negative things about it and I'm already writing the rest of my life off.
So hearing positive things will help.

I'm currently on Docetaxel and I'm having a hard time with it. Periods have stopped, skin is dry, mood is low, but then I have lots of other stuff going on too.
I'm due round 4 soon, then onto FEC which is meant to be awful.

I'm so sorry OP, it is very hard. I had the fec cycles first and found them ok, no nausea just general tiredness & aches, no nausea after docetaxel but the aches got worse for a bit.
Do you have any local support groups nearby? It can be very lonely even with your family around you, I can't imagine how much worse it is going through this during lockdown.

FEC was definitely better than Docetaxol. Much better,