69.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Scared of Tamoxifen :(

23 REPLIES 23
Ele J
Member

Re: Scared of Tamoxifen :(

Good on you Bibi! It's so difficult when posting isn't it... I never want to diminish how rotten it is for people who have bad SEs, but at the same time really want to give hope to people who are worried.

Good luck anyone who's about to start on Tam. I'm 3 months down, only 117 to go 😏
PeggyCat
Community Champion

Re: Scared of Tamoxifen :(

Bibi, so glad to hear that you are getting on well with it. I'm sure it's far too early to say for me as I'm only on day six but so far so good. In fact I'd say I've had fewer night sweats this last week since I started taking the tablets!

 

I've been eating really healthily most of the time since just before chemo and am now trying to build up my fitness again - your comments about hearing other people say that these things have helped will spur me on to continue. 

 

Ruth xx

Bibi44
Member

Re: Scared of Tamoxifen :(

Hi Ali-B Hope you're hair is going ok with the cold capping. I can give you positive feeback. Been on it for nearly 3 months now & no side effects whatsoever. I think it's key to exercise a lot & eat healthily. I was dreading it & read a lot of threads where many ladies were saying they solved their problems by doing those 2 things. The problem is that people who are fine on it don't tend to post (it's like tempting fate & also not nice for those who are suffering). I know four people in real life on it & none are having any major issues either.
Hi EleJ - you were the one that posted for me when I was worrying about it before I started. Hi Ruth glad to hear your hair is sprouting. Had my first haircut today & now have something akin to a normal hairdo, if a tad short & thin. Could even dump the scarves at a pinch, but being a vain moo, I am waiting to cover this ghastly grey before my 'big reveal' to the world. All the best ladies xxx
Sue H-S
Community Champion

Re: Scared of Tamoxifen :(

Hi Ali, My thoughts are with you andcI certainly can understand why you are getting so down. I was diagnosed in January, had my op a week ago and am waiting for my finite results in a couple of weeks to find out what my treatment plan will be. I was put onto Letrozole 3 weeks ago - pre op - as I am pastt menopause - and had the same concerns as you, including a weekend of total meltdown. Being on my own, had to work hard to get myself back out. Similar to you, I was really concerned about skin ageing, my sexual ability/health, energy, etc. I like my life the way it was and now these little tablets are supposed to change me into an old woman! Oh NO! So I researched a lot and it appears key for us to support our adrenal glands. Not taking the treatment is not an option, so I am doing as much as I can to reduce the possible side effects. We are all different from each other and will respond in different ways to our treatment. To support my skin I have taken to Palmers line smoothing eye cream and their skin therapy oil for my face. My body gets treated to the Skin Therapy oil every day with top ups of their yummy cocoa butter formula body lotions. These contain all of the relevant vitamins, antioxidants, etc. to support my skin. So far, so good. Now to the bit no one likes to talk about - vaginal altropy/ vaginal dryness - if you get this side effect - read up about it, be aware of reoccurring UTIs, but there is help! Hyalofemme is a good treatment and combined with YES lubricant all should be well. If you have this challenge DO talk to your cancer nurse - she can really help! To support the rest of me I take Maca root extract ( worth researching on the internet), slow release Vitamin C, multivitamins, high absorption CoQ10 with BioPerine and Calcium with iron. So far, so good - no loss of energy, no loss of libido, no aches, no pain, no mood swings - just the odd hot flush. I hope it stays that way and also hope once you explore some of these supporting methods - you will feel more comfortable with yourself and your challenges.
Butterfly318
Member

Re: Scared of Tamoxifen :(

Dear Ali-B

 

I always try to put a positive slant on things but the homone therapy does result in pain and tiredness for me.  I do not let the pain get in the way of me doing anything and i did the Moonwalk May 2015 in London, a walking marathon.  I swim and do zumba and pilates, i used to do spin and grit (i find these too strenuous now).  I have gained more than a stone and struggling to get that off.  Much like Magical Moon i am not prepared to stop the tablets as i had a very large grade 2 stage 3 ER+8 PR+8 so would be too frightened to stop.

 

I am 3 years on Hormone Therapy and look forward to 2023 when my 10 years is up.......and hopefully i'll still be around....  

 

Take Care  Butterfly x   

PeggyCat
Community Champion

Re: Scared of Tamoxifen :(

P.S. Ele, not working yet. Starting phased return in about two weeks. How about you?

PeggyCat
Community Champion

Re: Scared of Tamoxifen :(

Ele, my hair has come on a lot in the last few weeks. I've a good covering now although it's mostly white. To be fair, I'd not seen my real colour for a number of years so I'd no idea what was going on underneath. I'm looking forward to going for something totally new in the hair department once it's long enough to actually cut! Like you I've been eating really well - mmm, well except for the massive amount of halloumi I've just had for dinner this evening but that's good for the soul so we'll let that one pass. And I did have lots of veggies with it.

 

Only picked up my prescription for Tamoxifen this week and am starting tonight. I'm already having chemo hot flushes which are tiresome but I'm able to cope with them - I am 52 so would have no doubt been coming up to the menopause shortly anyway and am trying to be philosophical about it. 

 

It's good to see the positive comments from people here about how their experiences so far. I'm hoping this will be the same for me too. I will report back.

 

Ruth xx

Ali-B
Member

Re: Scared of Tamoxifen :(

Oh Jo & Ele,

 

I really do appreciate what you've both said and it brings me comfort. I think I might be just having a bad couple of days and the mind has been churning on overdrive. 

 

I have to look beyond all the crap and get to a place where I can live my life again. It's just a bit of a mountain at the moment.

 

Thank you both once again,

 

Ali xxx

Ele J
Member

Re: Scared of Tamoxifen :(

Agree with all that Jo!

Ali, I had my last chemo on 2 Dec and started Tam on 2 Jan, so my hair has been growing back while on Tam (I didn't cold cap so was completely bald). My hair now is still obviously v short but is definitely full thickness.

I have been trying to eat super healthy too, with plenty of lean meat, fish, eggs etc as I know iron is important for thick hair. Who knows if that's helped but it's made me feel I'm doing everything I can.

Try not to worry about the next stage, just focus on getting through your chemo (easy to say I know). In my experience chemo was the hardest bit so you're nearly over the worst. I found rads fine by comparison, and Tam equally ok.

And if all else fails, don't forget Kylie did 5 years of Tam and she looks great, no?!

Best of luck x
Jobey68
Member

Re: Scared of Tamoxifen :(

Ali don't be so hard on yourself love, your going through a hell of a time! Try not to keep thinking ahead so much, deal with Tamoxifen when the time comes, don't get yourself in a state over it now. I've been taking it for a year and I'm fine, no awful side effects and I don't think I've aged 10 years, well no one has said I have at least! 😜 You can't cope with it all at once it's just too much and you will keep going around in circles, all lessons hard learned myself Hun! XxJo 

Ali-B
Member

Re: Scared of Tamoxifen :(

I am just so mixed up about having to take hormone therapy. I know it's crazy, this drug is supposed to keep the cancer from returning but I am fearful of how the drug might age me. I know it's mad to be thinking like this now (almost half way through chemo) but it's all in my head swirling around atm. Just when I think I've put it to bed it all starts up again. I wish I could just let it go as I *will*be taking it but once again I am fearing the unknown. What did I do to end up here *sob* I feel so worn down with it all and I feel like this is going to be it for the next 10 years (potentially). What's wrong with me? 

 

*sob*

 

Ali xx

anngc
Member

Re: Scared of Tamoxifen :(

Hi I had 4 cycles of TC last one 22/2, I started taking Tamoxifen on 14/3 not had any side effects up to now. I used the cold cap kept 50/60% of my hair, it is still shedding I'm not sure if it's still the chemo or more worrying it might be the Tamoxifen I'm keeping my fingers crossed it stops soon.

 

Ann xx

Ali-B
Member

Re: Scared of Tamoxifen :(

Hello Ladies,

How has your hair fared during this time? It might be early days for some of you but are you still seeing hair loss??

Ali xx
Ele J
Member

Re: Scared of Tamoxifen :(

Hi Ruth

So good to hear from you too! I have been keeping an eye on a few threads but commenting less. Glad you are at the end of active treatment and hope you are feeling well.
Are you working? How's your hair coming along? I'm planning a little hat burning ceremony tomorrow to celebrate the return of mine!

Yes, Tamoxofen has not been anything like as bad as I feared/had heard, which is not to diminish the experience of others who have had a bad time of course!

I'm planning on doing the BM10k in a couple of weeks - Barry from the Oct thread signed up didn't he so I will look out for him.

Let me know how you get on on the Tam - fingers crossed for you xxx
PeggyCat
Community Champion

Re: Scared of Tamoxifen :(

Hi Ele,

 

Great to hear from you and nice to be catching up with you ... although not with the running yet I can assure you. I was signed-off yesterday after having node clearance last month. I didn't need rads in the end so here I am just about to start on the Tamoxofen. So good to hear your positive take on it all and that you seem to be doing so well. Hope life continues to go in the same direction for you.

 

Ruth xxxx 

Ele J
Member

Re: Scared of Tamoxifen :(

Hi Ali, I've been taking it for 3 months now and in that time have got back to running about 3 times a week - planning a 10k in a couple of weeks - and have managed to lose about 10 pounds (most of which I put on during chemo!).

My hair seems to be growing back ok too - that was my biggest fear re Tamoxifen, that my hair would be thin or not how, but so far so good!

You'll get your old life back, never fear, and some things will actually be better because you appreciate them more.

Best of luck x
scoobydavies
Member

Re: Scared of Tamoxifen :(

Hi Ali I'm very scared about it too X so you're not alone. I want to start a family too 😢xx
Jobey68
Member

Re: Scared of Tamoxifen :(

To be honest Ali I dont find them a problem and like the security of knowing im able to take something on going to keep me as safe as possible from this ever happening again! My surgeon said dont read the side effects!! XX
Ali-B
Member

Re: Scared of Tamoxifen :(

Thank you Ladies for the feedback. I just had images of looking like I'm still on chemo, thin hair, fat, looking like 90 rather than 46. I am concerned about the 'aging' effects I guess and the bone pain. I used to be a regular gym goer before all this 5h1t and I hope to be able to do so again once it's all done.

Want my old life back *sob*

Ali xx
FJA
Member

Re: Scared of Tamoxifen :(

I have started only 3 weeks ago. I have stored it in my knicker draw to help in remembering to take it. I feel more tired and but it does take longer to get to sleep. I know I am less physically tired than usual as I am working less and not exercising as much. I feel more alert when trying to fall asleep. 

I am grateful research has shown then strong efficacy and availability of Tamoxifen. It has still taken some accepting I need to take a medication long term. 

Jobey68
Member

Re: Scared of Tamoxifen :(

Hi Ali , I've been on Tamoxifen for a year and honestly it isn't anything to fear, yes there are various side effects and you will read about a lot of them here but you aren't likely to get them all if any! I haven't had anything that's made me think I can't take these anymore, tiredness,the odd flush, a few extra aches and pains but really nothing to worry about Xx Jo 

Kazzer52
Member

Re: Scared of Tamoxifen :(

Hi Ali, I've been on tamoxifen for 3 months and not had any major problems. I have found different brands dont suit everyone. The first time I had Wockhart brand and no problems, second month I had Genesis and had lots of aches and pains but back on Wockhart now and no problems apart from the hot flushes. If you find a brand that suits you stick to it. Good luck. 

 

Karen X 

lizzieb
Member

Re: Scared of Tamoxifen :(

Hi Ali,

 

Don't jump ahead, and don't be scared. I have been taking it for 2.5 months now and yes, I have had some fuzziness, a few headaches, some hot flushes. But overall it has not been so bad and it has not taken over my life... as I have not allowed it to. There is a lot of help out there for overcoming side effects and some people experience very few. For me the benefits really outweigh the SEs - taking Tamoxifen is my best insurance policy against my HR+ cancer coming back. I need to do that for myself and especially my family. It has to be worth it. But I honestly wouldn't take it unless my oncologist and breast surgeon hadn't fully explained to me what the benefits were. Talk to your medical team if you are unsure.

 

Although we might complain about it on these boards, taking Tamoxifen really isn't so bad. Staring at the unopened packet and taking the first tablet are the hardest parts.

 

For many people, chemo is the biggest fear. You are already managing that one by the sounds of it. We are all amazing women on here, and stronger than we think. One step at a time xx

Ali-B
Member

Scared of Tamoxifen :(

Hello Ladies,

 

Looking for some positive experiences of women on Tamoxifen. I read so many negatives that I am quite worried about the prospect of having to be on it (and subsequent hormonal treatment) when my chemo ends and for possibly the next 5-10 years.  Chemo is torture enough!!!! 

BBFN,

 

Ali xx