Anti-werewolf pep talk?

CellyK

Hello lovely ladies!
Calling for a pep talk!  I'm about to start taking my tamoxifen for the first time.  It feels like a big step - such a long-term change / commitment (10 yrs+).  Aside from the 'no going back' aspect, it's the drop in oestrogen that freaks me out.  
Being peri-menopausal I was already getting those signs - like growing a goatee  dry skin, monthly migraines, etc etc. Now that my lady hormones with take another steep dive - what the hell kind of werewolf am I going to turn into?!  
I'm single and, while I don't need the validation of a man, it will be nice if they don't actually scream and run away. Particularly under a romantic full moon!  

Mira

Hi Celly, I've been on tamoxifen for about 2 years now and have hardly had any side effects at all!!  Turning into a werewolf would be pretty cool though  

I take mine at night before I go to bed, lately I've been getting one hot flash soon after but it soon passes.  I've found one brand of generic tamoxifen causes me worse side effects, but I can never remember which one it is  

iserbrown

@Cellyk what a cracker, your description of how you perceive you will be on Tamoxifen, goodness I hope you are wrong!  Yes I am one of the lucky ones taking Tamoxifen, only got 7 years 10 months to go but hey who's counting!  I settled into a routine of taking it early afternoon.  Tried morning and evening but I had little niggles, perceived or otherwise, I am not sure, but now happy with my routine. Yes I have a couple of side effects that I can and have to live with but that is to be expected.  Try and stay with the same brand, as @Mira had said she found a particular generic brand that didn't suit and I was the same, drove me nutty!  I have been using and will stay with the brand Sandoz unless of course the Onc takes me off Tamoxifen and onto something else.

So deep breath and away you go; hopefully your side effects are minimal.  Take care xx

Romla

Hi @CellyK understand your trepidation re tamoxifen- whilst am on different hormone therapy as am post menopausal felt exactly the same. Am going into week 3 and thus far have not grown another head or as yet not turned into a werewolf - least I don't think so. Am armoured with every pill or potion the ladies on here have suggested ready for problems and taken up twice weekly exercise class to keep the joints moving but so far so good.Tbh am still a bit anxious and and relying a bit too heavily on chocolate but part of the latter is this rotten winter weather.My message is life is still good and going along pretty much as normal just wishing for warmer drier weather. XO 

CellyK

@Romla I hear you re. the weather!  I'm downing black tea and coffee much more than I like to admit - just to keep going through these cold, damp, icky mornings.  
It's so helpful to know about people's routines re. the pills, and generic issues.  It's great to be armed with a bit of knowledge going into it!  Thanks all of you so much! 

Afraser

I have been on Femara for over four years - started when post menopausal. No migraines, no unwanted hair! I do suffer from vaginal dryness and Femara is not great for bone density - mine was really good to start with so I should get through 5 years OK. But I think these side effects are more pronounced with Fenara than Tamoxifen. Good luck! 

melclarity

@cellyk here's the funny thing, Tamoxifen actually blocks the Oestrogen, so it doesn't actually cause a drop in Oestrogen at all. Thats why some ladies freak when their levels are high?? it actually indicates that its working strangely, because its blocking it. and no more of a commitment to take any other pill honestly, not a huge deal. I did Tamoxifen for 4yrs and now been on Arimidex and Aromasin finally. xx Melinda

Harlee

CellyK said:

Aside from the 'no going back' aspect,  

I'm not sure what you mean by this? 
The recommendation is to take Tamoxifen for 10 years but nobody forces it down your throat. You can choose to stop taking it at any time. 
Sorry to say that if you are already perimenopausal you may not get to 10 years because usually when it is confirmed that you are post menopausal you will be switched to an aromatase inhibitor - probably Arimidex or Aromasin. 
Don't worry about side effects before they happen - who knows you could be one of the lucky ones who barely notices it. 
Good luck.

CellyK

@HarleyB - yeah, may be switched to the others later - but what I mean is 'hormone therapy' per se for long term. I definitely wouldn't stop, since the research is showing less recurrence for those who take hormone therapy for longer. I feel it a privilege in a way to actually have 'long term' as a likelihood.  But for someone who's even been uncomfortable taking panadol, it feels big.  

Hopes_and_Dreams

Hello @CellyK, I hear you!  Before breast cancer I would take panadol maybe once or twice a year so I was really anxious about taking Arimidex.  I had the tablets sitting on my kitchen bench for a fortnight before finally visiting my GP and sharing all my fears.  He put things into perspective for me and gave me a few tips for reducing some of the side effects.  I take a 25000iu vitamin D capsule once a week, get a vitamin B12 injection every 2 months, try to exercise daily and keep up a healthy diet with lots of greens and fruit.  I can't say if any of these things made a difference but 12 months on I only have a few side effect which I can live with!  
Taking that first pill was a big deal.  Switching off our hormones is a big deal! I can still remember how I felt when I swallowed that first pill.  It was like turning a corner on a dark night and not knowing what was waiting for me.
But my cancer was 100% ER/PR positive so I have no choice if I want to give myself the best change of a cancer free life.
I don't have the werewolf thing happening yet, but a few hairs and dry skin versus another bout of cancer - no contest! Wishing you all the best and hopefully any side effects will be manageable.  Jane xx
 

Romla

Was the same for me -@Hopes_and_Dreams walked past the Femara for several days and just kept the Prolia in the fridge for a week then garnered courage started both.Been on both 3 weeks - noticed joint aches I didn't have before after sitting down for a while but fine once I start moving.A talk with my GP about Prolia was very helpful - he said there were side effects with Femara but that Prolia would be fine. Have yet to bay at the moon and my husband has not taken up residence in the shed so thus far is ok.Will say however am still nervous as am osteoporotic at the outset and Femara thins bones - hopefully Prolia will prevent fractures.

Hopes_and_Dreams

I had a bone density scan yesterday and as much as I can make out from the scan, looks like my results have slipped back a bit from 12 months ago.   That is my main concern with Arimidex as I also had some osteopenia in my left hip which I had managed to turn around a little before breast cancer hit.   I'll be visiting my GP shortly to see whether I need to consider Prolia (or similar) at this stage.  Good news @Romla that your GP feels Prolia shouldn't have too many side effects.   I have a lot of years ahead of me and can't afford to have my bone density slip back by a couple of percent a year!

Romla

Unfortunately Prolia only on PBS if you have had a fracture already and gather very expensive if not . However there are bisphosphonate tablets you can take but need to be careful you stay upright for 30 minutes after taking to avoid an ulcer in gullet. Also regardless Prolia or bisphosphonate tablets serious dental can cause osteonecrosis of the jaw - eg root canals , extractions. Make sure you take good care of your teeth and they are sound before you start bisphosphonate or  Prolia. There are things you can do as you know to promote bone density like weight bearing exercise , Calcium/ Vit D tablets ( I take 2 Caltrate bone health daily). etc etc but whilst on arimidex hope you have regular bone density checks . Your medical oncologist should be monitoring this for you and providing guidance - diet and sunlight may not be enough on aromatase inhibitors I'd be talking to the onc who put you on arimidex who has specialist knowledge . There is an osteoporosis site online also I'd be looking at their suggestions  too- it all helps.

melclarity

I take Prolia injections twice a year, yes it lists all sorts of side effects, Im into my 2nd year on them now and apart from feeling a little off for a few days I have had no side effects. I also do stay on top of my Dental Health, but there's never been an issue. Unfortunately Prolia are only free if you are over 70 years of age. STUPID!!! So my injections cost $275.00 and I get $153.85 back from my health fund, so not too bad really. 

Weight bearing as Romla has said is most key...my bone density after chemo was shocking! with Osteoporosis in my lower back and neck. I don't anticipate for the next bone density to be worse at all, so will be interested to see with everything Ive done as to how things are looking now. I'll be honest I wouldnt have known I had Osteoporosis, it's silent...I dont even think about it, there's nothing that I don't do. 

Vitamin D is the only way to boost your levels thats why its generally the only thing the Oncologist gets you on immediately post chemo. 

I'm 5.5 years now on combined Tamoxifen which stopped working at 4yrs and I had a recurrence and 1.5yrs on Arimidex switched to Aromasin and honestly, my symptoms now are very bearable. I don't put any thought into any of it now...the only focus I really have is hmmm well Im doing all the things theyve said to do..so I focus on other things such as enjoying life and making plans. xx

Romla

If you are osteoporotic , found to have had a fracture linked to it and yet under 70 you qualify for the PBS price of $38 for Prolia. I'd be talking to my onc @mel clarity worth a shot anyway.I agree it's unfair to pay the full price esp as cancer treatment can cause havoc with our bones. Do you think @melclarity there is a better time of day to take your AI tablet from point of view of joint pain ?

primek

My understanding was it was on the pbs  @melcarity if you were identified as osteoperotic. If osteopenia  (close but not quite like myself) it doesn't qualify. The over 70 is for women who have osteopenia and were at higher falls risk. I think you need to discuss with your oncologist. 

I'm having my bone density done this week to see if I am now in area of osteoporosis. 

 https://m.pbs.gov.au/industry/listing/elements/pbac-meetings/psd/2013-07/denosumab.html