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.

I heard FEC was worse due to it name being the red devil.

I had one dose of Cyclophosphamide on my first round with Docetaxel and it floored me.

The rest of your forties don’t need to be blighted. I didn’t need chemo but I did have radiotherapy plus 5 years of tamoxifen and anastrozole with a further operation. I can’t imagine going through all that in a pandemic with no support during appointments. It’s really tough but you won’t know how you’ll feel until you take the drugs, we’re all different. Also there’s no reason why you can’t enjoy sex still

Lockdown has been a nightmare tbh.

I can only wait and see, I know everyone is different but I read so many scary stories.

Good to know @CherryRoulade!

@Fuckmyliferightnow - 6 weeks post chemo I’m surprised how much better I feel after such a short time. Hair and nails returning and (almost!) happy to be back WFH full time. Chemo was awful but you will feel better when it’s finally over!

@ElaineMarieBenes that's very reassuring.

The FEC part is more likely to cause an odd tingling in the nether regions and allergies. The epirubicin does make hair loss much worse.
It’s not particularly painful though.

Docetaxol causes a deep bone pain in some people. It can be very uncomfortable.

I found that with round one, but my dose was drastically reduced after that.
The pain in my pelvis felt like I was in labour, then the injections were thrown in for good measure, I took oromorph but that did nothing. I ended up in hospital.

Glad FEC doesn't cause the same pain.

FfsDoE. No, you owe it to yourself as much as your daughter. No fatigue at all, skin ten years later gets unsolicited positive comments and is definitely better than many friends - decent moisturiser, Blistex and a staying out of strong sunlight.
I had multiple blood clots from chemotherapy: eighteen in one arm that basically clogged up completely. I’m very aware of heightened risk from cancer, so just ensure I reduce risk as far as possible. For tamoxifen the risk is about double but assuming no other risk factors, that’s still pretty low risk. Just if you’re on a very long flight avoid alcohol, move around and drink lots of fluids. Get checked out if you have a swollen calf for no obvious reason. It’s not likely, but I think in the ten years I’ve had to check maybe four times and none have been further clots.
Hot flushes are short lived. Buy a chillow. Don’t take St Johns Wort or Black Kohosh though.

@Fuckmyliferightnow have you started tamoxifen?

My Dr has started me to Aramadex (rather than tamoxifen) and I’m just starting my second month. My DH initially thought it was affecting me but I think I was just stressed due to moving!

• On not to! I’m not from Barry!

@ElaineMarieBenes I haven't started it yet. I'm just finishing Radiotherapy, still having Herceptin 3 weekly but no one has mentioned Tamoxifen yet.

I have been on Predict tool and apparently I have a 91% chance of not dying of cancer at 15 years, Tamoxifen brings that up to 93%.
It just makes me wonder if it's worth it.

I’m not sure of the odds for me. I have had 11 rounds of herceptin (and 25 radiotherapy) but am moving countries atm. I am returning to the U.K. and so am hoping to be done with the herceptin.

I was on tamoxifen for 5 years I think, been off it for 7 or 8. I am being prescribed estoril, the guidance on hrt is changing so you may well be able to take it if you need it, as I do. The tamoxifen did make me feel achey to begin with, but nothing too awful, and my body seemed to adjust after about 9 months. Don't assume the worst before you've even been prescribed it.

Hi all. Can anyone tell me the effects Docetaxel had on them. Did anyone at all find it easier than expected? I’ve already had EC.

@Lunificent I had ACT - the T is taxol, which I think is the same thing. I didn’t find it easier (think I was expecting too much there - but it’s over now!). I highly recommend using frozen gloves and socks - I only started with these after 6 weeks when the neuropathy got annoying and wish I’d started from week 1. This is to stop nail damage and the worst of the neuropathy - apparently mine isn’t too bad but I still have a few minor issues (though nearly completely cleared now) 6 months down the line! It does end and I am feeling much better - good luck!

First appointment in the U.K. is next week - don’t know what to expect. My GP has referred me on the the two week path so that will be odd for everyone I think. My Aramadex runs out in 3 weeks.

@ElaineMarieBenes thanks for useful info. Hospital don’t offer the gloves and socks so no choice there. When might I expect to start to feel any neuropathy. I had my first Docetaxel yesterday and feel fine so far. Perhaps I’ll feel different when the steroids wear off.

Hi @Lunificent - I bought my own (well the socks!) and improvised with sports packs for my hands which I froze (I wasn’t in the U.K. for my treatment and there was a 6 week delay for delivery of the gloves). I took them in frozen and the lovely oncology team kept them in their freezer for me and brought them out half an hour before the taxol started (and kept on until I think half an hour after drip finished). It’s not just the neuropathy it tones down but the nail damage - highly recommend and all the best 💐

I really really wish I’d done this from week one - for me the nail damage was shocking and the frozen gloves/socks (or frozen sports packs) help enormously (or did for me as I only lost half of my finger nails and just half of one toe nail)

@Lunificent sorry I would send you my socks and gel sports packs but they are on a shipping container heading to the U.K. via the Suez Canal atm and not due here for another 5 weeks! I was going to leave the socks on the oncology ward but arranged to get some in for future patients. I think my toenails were less affected as I had ‘proper’ socks rather than the improvised hand devises I made!!

*the hospital arranged!

I've been taking Tamoxifen since I had breast cancer in 2012. It thinned my hair a bit, thickened my waist, gave me leg cramps (I stave these off by drinking a lot of water, exercising and taking magnesium tablets) and a few hot flushes.

But my energy levels weren't affected and my periods continued for another six or seven years until, I think, a natural menopause started. So I can't say it's been too bad.

@ElaineMarieBenes. We have a sun longer waiting in the Suez Canal!
It’s day 3 after my Docetaxel. Nothing has happened and I feel normal. Waiting to see if there will be any side effects.