Tamoxifen

Hi Dub, I have no advice for you as I have only been on it for 6 days...lol.
I was going to put a thread up myself as im looking for any information from 'people' as opposed to from the doctor or the leaflet!

So if you have any advice for me

So far I feel ok, i suppose im waiting to grow an extra head or something!

Hi Hugs
haha you won't grow another head. I've spoken to a few people who don't seem to have any side effects at all. For me - the hot flushes are terrible. It's ok now during the winter cos we're saving a fortune on heating oil! Luckily its just me and hubby here and he is happy to wear a few extra jumpers. I threw out the electric blanket and now I have to get in and warm the bed for him.
Went to Australia last year and I cooked! so I think I'll stay away from hot countries until I'm off taxoxifen.
Other side effect - complete and utter lack of libido. Also at the start I kept getting thrush but that seems to have settled down.
Otherwise the only thing I wonder about it the 'feeling-down' days
I presume it must be the taxoxifen but I'd love to hear if that was the experience of others

Hi Dub & Hugs,

I have been on tamoxifen over one year now. It can be hard to decide what side effects are caused by the tablet itself or just general wear and tear recovering from cancer and other treatments. As per usual Dr's are reluctant to admit the tablet is causing any symptoms, probably because they are afraid we will stop it

I have had a variety of symptoms but before I depress you both they have mainly resolved now. I did feel more anxious and have low moods for some months but that may just be the aftermath of everything I have been through and I am now feeling happier. I had some bony pain even though Tamoxifen is supposed to have less risk of causing this but again this has thankfully resolved, although my knees & elbows are tender at times. Maybe just getting old

I had some ovarian cysts which I did not appear to have problems with before but fingers crossed they have stopped growing now too.

Another less discussed side effect is the dryness you know where which Dr's do not warn about, maybe because I am single but I do hope to meet prince charming in the future Gynaecology advised astroglide for general lube and replens for long term maintenance!

In spite of all the side effects I do feel safer having something to take to prevent recurrence and lots of people I trust have reassured me it is a good drug for prevention.

Dub if you are convinced it is making you unhappy perhaps you could try an AI depending on your menopausal staus and whether you want to risk if they may have different side effects for you. I think it is normal for us all to feel more anxious and sad at times but the NB thing is lifting out of these moods by treating ourselves and keeping socialable.

Hugs good to see you are doing Ok!

Best Wishes
A x

Hi Avalanche

Thanks for that. Today is a good day so its hard to remember how down I felt the other day. I've looked on the net and 'mood swings' are supposed to be a side effect of tamoxifen. Well my mood can change day to day so I suppose thats mood swings.

Chemo sent me straight into menopause. Tamoxifen side effects are very similar to menopause so I don't know what end of me is up

To be honest, I still feel very sad when I think about the fact that I had cancer. I had bowel cancer in my early 30's. After 17 years the doc told me that cos it hadn't re-occured, I should put it all behind me. I was thrilled and then a few months later I got diagnosed with breast cancer. It seems so unfair and I'm ashamed to say I feel very sorry for myself. Trying not to cos I know there are millions of people so much worse off.

Anyway - when I'm feeling down it all just gets on top of me an I just keep crying with self pity. But today I'm good

Hi Dub,

Gosh you have very good reasons to feel sorry for yourself! Life can be very cruel sometimes. Don't be too hard on yourself. It is impossible always to be upbeat and think of those that are worse off. You have been through the mill and sounds like you are doing your best to keep your chin up.

Ya I think the tamoxifen definitely contributes to mood swings but those settled for me after about 6 months. Likewise the chemo put me into early menopause.

All a joy! But I'm glad today is a good day for you!

A x

Hi Dub. No wonder you are feeling the way you are. Cancer once is bad, but to have to go through it twice is crap.
Have you tried councelling? It might help. The cancer support centers are great. Arc house in eccles st in dublin, and theres one in cork.
Theres the Larcc center in mullingar, which is lovely aswell.

They offer free councelling and therapies like reflexology, indian head massage etc. Its well worth looking into. Anything that might help you feel better.

I havent have any side effects yet from the tamox, Im only on it a week. I do fear that it will alter my moods though. Im normally mellow enough, and Id hate to start being grumpy.

Avalanche its great to hear from you, how are things? Did you get your reconstruction sorted (I think you had problems???)
I hope youre keeping well!! Its hard to believe that when we met I hadnt started chemo, and now its all behind me. It seems so long ago

Hi again
Avalanche - I meant to say to you that I too had that terrible dryness when I first started tamoxifen. It lasted over a year but lately I'm back to normal (I've been on it for two years now). Hopefully yours will be only temporary too.

Hugs - maybe the counselling is a good idea. I go to the Gary Kelly Cancer Support Centre in Drogheda and they offer a counselling service. I never thought of myself as being somebody who needed it as I am fairly well grounded normally. But maybe I need some help with these moods. Thank you for the suggestion.

And well done on finishing chemo. I finished it just over two years ago. It was the worst experience of my life and I was sooooo glad to get my hair back. (wish there was a smiley face with hair to insert here)

Dub, thanks maybe the sahara desert will improve soon then

Good advice from hugs. The ARC & other centres are great and I would love to keep going but work gets in the way. Grateful to still have a job though after all the time had to take off.

Hugs, I can't imagine you ever being grumpy! Hopefully the tamoxifen will not effect you too much. It does seem a long time since we met at the ARC and amazing to have gone through so much. When is your reconstruction planned? I think you are having the DIEP? Yes I had many complications but managed to get funding for surgery in Switz with a very special surgeon who I am now in love with He miraculously managed to do a DIEP on me (I am thin if you recall) and I go back for the second stage in April. It feels so good to be getting near the end of surgeries and back to a form of normality again!

Have a good weekend
A x

Hi Dub,

I was on Tamoxifen for 1.5 years and found the menopausal side effects that come with it (for many people) annoying but, lucky for me, not too bad. One of the things that I believe helped me is that I was already on an antidepressant called Lexapro. I found out afterwards that in the US, many cancer patients on Tamoxifen are routinely prescribed a low dose of something like Lexapro or Effexor (known as SSRIs) to help them cope with menopausal side effects like flushes, mood swings, sexual issues, etc.

I know there is stigma related to taking an antidepressant (I resisted trying it for 6+ months) but I now view it as similar to a diabetic taking Insulin daily. My advice would be to go talk to your GP about your mood swings, etc and see what they think.

Also, if you wanted to meet to talk, I am also in Drogheda. No pressure, I understand you may want to keep your privacy.

Hugs,
Flo.

Hi Flo

that's very interesting. I would have no objection at all to taking low-dose anti-depressents if it helped with the flushes and the moods. I have an appointment with the onc. in March so I'll ask him then. Every time I tell him about the flushes he just says that it will settle down eventually. Well, like I said its two years now so I imagine things should have settled.

Thank you for the suggestion - I'll look into it.

I've got a few things coming up in February. Annual mammogram (which I dread) and also colonoscopy cos I had bowel cancer years ago. I can't wait for Feb to be over and hopefully to get a clean bill of health. I'm sure that would lift my spirits.

I too had a mastectomy (Dec 2007) and I went on to develop lymphoedema.

I'd love to meet for a chat sometime to compare notes . I'm not always miserable .

hello all,
sorry, I don't post very often but I do check in every now and again.
Gosh, I could have written most of your posts - I have all the symptoms ye talk about but funnily enough do not have the mood swings.....
I am taking it two years now and no improvement on the ''hots'', the
dryness, lack of libido and stiff when i first get up from bed or from sitting down.................

We were due to change our bed so we got a 6ft bed and hubby now
has a single electric blanket on his side - it works well - the bigger bed is fab too as it is easier to flap off the duvet and then decide two minutes later that you must go under it again !!!!
It is always at its peak at bedtime - the minute the head hits the pillow - so much so that i have a towel on the pillow and a spare towel to sooth my face nearby................ its mad !!!

The cold spell was fab - when a hottie would happen all I had to do was go outside and dance in the snow !!!

I find that I wake up freezing cold in the mornings - like an iceberg to touch............. then after a while its back to boiling status again.

OHHHH it does make one weary but i just remind myself that it must be doing good and it cuts the risk of bc returning by half I was told.

i'm back at work and find it difficult sometimes - I have a fan at my desk and about once every hour it has to be switched on full flame
to my face....................... its fab though.

i think i will just ride it out and not take anything to counteract it.
just three more years to go - sher in another few months I will be half way there................. and believe it or not I have met people who are at the five year mark and they miss the tamoxofin as they feel it was like a life assurance policy pill..................

so now - happy burning up - saving a fortune on sun holidays and
heating too ................ and despite all the discomforts we are
very very lucky to be able to take it and tolerate it - definately invented by a man though !!!!

rox

Hi RoxAnn

you made me laugh
I also loved the snow and every time i got too hot I would go outside and walk up and down the driveway in my jammies!

weird I also wake up freezing cold - even though I've been roasting all night. I wake - kick off all covers - fall back asleep - wake up cold - pull covers back over me - and then start the whole cycle again. I also often have to go out to the bathroom and wipe myself all over with cold water.

Like I said - the dryness seems to have cleared up.

Anyway.......I reckon the side effects will all be worth it and if I wasn't moaning about tamoxifen I'd have to find something else to moan about

Dub (in a happy place today)

Hi Everyone,

I have never used this product but I have seen others recommend it. It might be worth looking at for some of you. Its something that keeps your pillow cool (I just use two ordinary pillows that I turn over and swap around during the night to help keep me cool). But my night sweats and flushes are not bad at all now.

http://www.chillow.co.uk/2010/template/

Regards,
Flo.

Oh dear Tamoxifen - chilling and lighting - the joys.
well Flo thanks for the chillpillow website.
I have just ordered the ''original chillpillow'' so will do a
review of it when it arrives and let ye all know !!

I love gagets so am looking forward to trying this - my
credit card is top heavy since christmas but i just could
not resist !!!!

will let ye know if it is revolutionary

keep on smilin !!!

http://www.chillow.co.uk/2010/template/

Hi Honeys,
will I got the chillpillow (the original version) in the post two days ago - it came from the uk really quickly - I think I only ordered it last wednesday or thursday.

anyways, it it FAB - Well worth the cash - it worked out about €37 on my credit card .

My worst time is when I get into bed at night - my head just lights up and it is sooooo frustrating as it unsettles your ''settling down'' mechanisms and it takes ages to get to sleep -

I have had this pillow just two nights now and I think it is going to be one of my ''essentials'' in the future - i got great nights sleep.
When you cool down just push it parallel with the headboard and when you heat up flip it back ........................

well worth investing in

cheers
rox