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PinkApple's avatar
PinkApple
Member
13 years ago

Positive Tamoxifen Experience

Hi everyone,

When I first found out I’d be taking tamoxifen I googled it. Yes, I know, why?! But who is strong enough to resist? I’m prone to putting myself through the torture of googles. And what a special kind of hell that is!

 

As you might expect, Dr Google turned up site after site of women suffering what seemed like the very tortures of hell. Burning hot flushes, bone grinding aches, mild dementia. I couldn’t fathom the depths of their suffering and was terrified of the pain to come.

 

In wretched fear, I googled “Tamoxifen positive experience” one account came up of an Australian woman who’d come through breast cancer and was on tamoxifen and taken up jogging. Just one across the breadth of the internets.

 

So here I am, surprised to be having what seems a pretty ordinary day 7 weeks into taking tamoxifen. And while I'm sorry to know there are so many suffering side effects, I'd like to provide some hope and comfort that there are many others who are spared those experiences and may not be sharing it on the internet. We are more likely to share our negative experience than positve. But today was nothing short of marvelous!

 

My hot flushes were so mild I didn't even need to take my hoodie and scarf off. There is hope, and no need to fear the worst. Thank you jogging tamoxifen lady for giving me hope. Here is to more positive tamoxifen experiences.

 

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4 Replies

  • Louise, I feel your pre/post life angst. My rant was in no way directed at you. I read recently of some ridiculously low percentage of women who finish the full course of treatment and it shocked me. Perhaps my fear of recurrence is so massive (daily, constant thoughts of it still at this stage) that I can't begin to imagine not taking my pills each and every day, and can only wonder at how side effects, as bad as they might be for some, would negate the life saving benefits of that little pill. But then I felt like that about chemo too. Bring it on. Absolutely anything to reduce the risk of this bastard coming back to rid me of life span I don't want to lose. It wasn't easy. I hope to never, ever have to go through it again, but if that poison means I get to be 84, like my mum and more, like I said bring it on. Chemo was no picnic but it wasn't as all encompassing bad as I'd read elsewhere either. My post cancer life is different to my pre cancer life. Yesterday I debated in my head should I/ would I/no/yes having a chocolate brownie in the way others surely must debate do I do another shot of smack or snort a few more lines. I tire at times of treating my body like a temple. Weighing what I eat of certain foods. Taking so many supplements at times I surely rattle. Giving up wine, champagne. Yes me, a non drinker, imagine. Gram by gram working to lose the weight which I'd accepted and thought bugger it, I'm happy, healthy, fit, strong, my husband loves me, I'm stick of fighting my body. But apparently being overweight increases my chances of recurrence, so now it's a daily be good, stay good mantra that is no longer about being a size 8 for fashion's sake. It's about doing everything in my power to stay well. I hate that not a day can go by I don't think about it, because there is a pill I take, supplements I take, a mastectomy scar I look down on in the shower, grey short hair staring back at me in the mirror, a wig I don to face the outside world, a fake boob I strap in to do the same, a diary with appointments for oncologist, breast surgeon, mammograms, ultrasounds, bobs density testing, nutritionist, naturopath, yoga, personal training, massage. I've become a full time job and I'm not that interesting to myself!!! The point I wanted to get across I guess, is that so much of what we read here is negative, which is completely totally understandable (and I am not permanently positive trust me!), and that perhaps a little cognitive twist in the way we approach this, think of it, might help. I'm am not in anyway grateful I had to have this crap diagnosis hit me. I can't get my head around those who can think its a. 'Blessing and gift' as I read elsewhere recently. Nope it sux. But for what it's worth I've been saying 'grateful' every morning as I take my little yellow pill and instead of thinking 'I have/had cancer' I think 'Grateful (this is keeping it at bay) and over the course of a couple of months it has shifted my thinking each morning into a positive one. which surprises me as I am so not a new age/personal coach/affirmations kinda a girl. Louise, I just really hope your fears of going downhill once on tamoxifen don't come to pass, and the side effect gods are kind to you. Congratulations on being at the end of your year long treatment. May the next twelve months see you blossom. xx
  • I'm aware of others struggles with cancer, it's treatments and side effects. I am certainly one of the lucky ones in respect to my diagnosis. But it's all relative, I'm coming up to 12 months of surgery and treatment, and being her+ and hormone receptor+ my treatment goes on and on. So lucky again I guess depending on your point of view. I applaud science and appreciate advances that give us all a better chance of survival. Prior to herceptin, a her2+ diagnosis was a death sentence. My relectance for tamoxifen and future treatments is not to be ungrateful, of course I want to do everything I can to live a long and happy life. My frustration and sadness, when it creeps in, is because like so many, cancer robbed me of my fantastic forties and my good health, my beautiful strong body. At 41 I have felt weak and sick, sore and old. I look like a completely different person. So I'm grateful for the life saving meds we have the luxury of having access to, and I need to accept the physical changes with a more positive outlook. It would be better to take each tablet with the view of how it is possibly saving my life. But give me back my pre cancer health when I'm done with treatment. I can't help just sometimes feeling angry/sad at my situation. Relative to others though, of course I am lucky and should just get on with it. Xxxlouie
  • All the best Louie,

    I now wish I hadn't wasted so much energy worrying about it but couldn't help myself! I completely agree that resisting research is hard but the funny thing is that I can't research how my reaction will turn out until I've actually gone through the experience. So I thought I'd round out the information that is out there for others who like me may be dreading the process. All the best with your journey and I hope your body adjusts to it as easily as mine seems to have done. 

    Another thing which has helped tremendously is changing brands. I don't want to be spruiking for drug companies but the change in hot flushes between brands was really surprsing for me http://pinkandapple.wordpress.com/2013/05/12/generic-genox-vs-tamoxifen-sandoz-brand/