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Tamoxifen (part 2) HELP!!!!

24 REPLIES 24
stargazerlily
Member

Re: Tamoxifen (part 2) HELP!!!!

For anyone wondering about Citalapram. This post was written by me last summer after starting tamoxifen! I had my chemo delayed till sept so I could go on my holiday. As you will see I was going crazy!!! I then started my Tamoxifen again in December after chemo finished early due to me being neutrophenic. Again I turned into a drug crazed monster. I can't believe that the same person who started this thread, is the calm happy lady on Citalapram!!

Daisy_do
Member

Re: Tamoxifen (part 2) HELP!!!!

Ladies, let me give you my experience - the side effects change over time and I have now been on it 2 + years.

I had nausea first three months and occasionally still do so have some (Valoids) handy. I also had bad headaches but they went.

About three months in and I had bad joint pain, was like a 70 year old getting out of bed and walking - I still have this sometimes but mostly the joint pain has diminished. I now walk at least 3 miles a day listening to my ipod. Walking will help with bone density.

Then I got the night cramps and in the feet and calves etc - no longer stretch at all in case it brings it on. Tonic water for Quinnine to help with this.

My skin itches and my psoriasis are really bad now - my nails are terrible and my hair looks really full now and it was always thin ??? The doc will give cream and tables for itches. My back was so bad at one time I scratched it badly so take the tabs if you need to.

The night sweats went as quickly as they came and I am left with being so hot all the time - no flushes just hot when I get up, hotter when I am at work and hot when I go to bed - electric fan on all night.

Crying one moment happy the next - just concentrate on my grandchildren.

What I did hope to show you all is that with all the different SE I have been through they come and go and you may get one or none or some and I think we need to take it as it comes - just find the best solution for you personally to get through it. 5 years will be over and we will want to stay on it longer or we will feel freefalling - I am grateful for all the side effects as it means that the tamoxifen is working within me. I am thankful I awake every day.

I see what this disease does and I just get through each day at a time with whatever gets me through.

i wish all you ladies the very best and solutions for the best possible outcome - share the advice on what works.

God bless
xxxx

BellaLasagne
Member

Re: Tamoxifen (part 2) HELP!!!!

Morning lovely Ladies,

I don't know if this will help or not, but I've been on Tamox now for 2.5 years (so have hit the half-way point - yippee!) after mx, chemo and rads, so I've had the lot.

I had horrendous flushes, leg and foot cramps, massively itchy skin (like ants crwling over me; I thought I was going mad) and have gained weight. Luckily I didn't suffer with any mood swings. I have to say that in my 3rd year I've pretty much lost all these SEs, apart from the weight gain, but I'm fighting that one with diet and the gym 3x a week and am keeping it under control. Overall, I feel really well, and am now glad I persevered as at one point I thought I was going to have to stop taking it.

I know it's a long time, and the SEs can be horrendous, but it could well be (as someone else said) that it takes quite a long time for our bodies to adjust to all the trauma suffered and that these awful SEs are a complex mix of physical and mental issues.

HTH and love to all,

Bella x

Tiny_Tina
Member

Re: Tamoxifen (part 2) HELP!!!!

Hi Jo,
Sorry haven't had a mastectomy so not much help. Hoping if I bump this someone will come along and answer your question.

Tina
x

Tiny_Tina
Member

Re: Tamoxifen (part 2) HELP!!!!

Sorry to change the subject slightly. Does anybody know why we are all on 20mg Tam regardless of age, weight, height, two ovaries, one ovary, no ovaries.

Tina
x

jreedy
Member

Re: Tamoxifen (part 2) HELP!!!!

Hi Folks

I have been taking tamoxifen for only 1 week now and i am knackered and sore. My scar from my mastectomy is sore and my back,and the hot flushes are all day and night. Is the back pain a common side effect? Also just started radio so unsure what is causing the aches. Hope you can help.

Jo x

angielav
Member

Re: Tamoxifen (part 2) HELP!!!!

Just spoken to a lady who took Tamoxifen for six years and had absolutely none of the side effects ...

Tiny_Tina
Member

Re: Tamoxifen (part 2) HELP!!!!

Sorry, can I just add that we sometimes tend to forget that we have endured surgery, maybe chemo and rads now hormone therapy. We have had to get used to a change in our body image so is it little wonder that we get a bit depressed and/or highly emotional.

Tina
x

Tiny_Tina
Member

Re: Tamoxifen (part 2) HELP!!!!

I have suffered various side effects from the Tamoxifen. My consultant has said that it can take a year for your body to settle.
So far I have had the drownings-now much less.
Feminine dryness and itching-prescribed vagifem - great.
Cramps-only occasionally now
Itching skin-only occasionally.
Depressed and highly emotional-improving.
Peeling nails-not much change there.
I gained a few pounds but have stepped up the exercise and tweaked the diet and this has helped. Don't know if the added pounds were due to the drug or the fact that I hadn't been having my normal exercise during trreatment.
A few months ago I was at a point where I thought I might stop taking the drug because I felt I had become a whole different person but it is worth perseveering.
I have been taking the drug for 9 months.

Tina
x

ChoccieMuffin
Member

Re: Tamoxifen (part 2) HELP!!!!

For those about to start tam, I have a word of reassurance. not everyone gets bad side effects. yes, I get hot flushes but I don't go bright red and drown in sweat. Yes, I play the dvuet game but my lack of sleep is from non BC stuff. I don't have PMT symptoms.

For me the side effects are a bit annoying but very bearable. So if you're about to start, please don't panic.

Hope that helps.

CM
x

Blue_dragonfly
Member

Re: Tamoxifen (part 2) HELP!!!!

Oh SGL what a time you are having, firstly I'm so glad your hubby is ok after the riots, it must of been hell for both of you, can't imagine which was worse being there or thinking and waiting for a loved one with the TV images in your head.
As for tamoxifen ahhh!!!! I to have been having awful PMT like symptoms, and until I read this thread couldn't understand what's going on!! One minute calm, the next floods of tears or ranting and raving. And that isn't me. Told hubby last night about what I read here, he asked how long does it go on for, but he said I still must carry on with the meds. I thought as chemo, rads and mx finished things would be easier now, how stupid of me. At least with this site I k ow my feeling are normal . Good luck ladies xxx

oldandlumpy
Member

Re: Tamoxifen (part 2) HELP!!!!

really worried about starting this. I had to stop taking the pill back in the day before mini pills because it made me near suicidal.

i think i might be prescribed the liquid form because i have a problem with starch. I wonder if that has as many side effecs--it has alochol in it --whoohoo

stargazerlily
Member

Re: Tamoxifen (part 2) HELP!!!!

This drug is hell. Really really am at the end of my tether and don't know how I am going to cope with this for five years 😞 x

tigerlillyput
Member

Re: Tamoxifen (part 2) HELP!!!!

hi all...
i,m having a double whammy of tamox and zoladex!....having the tamox for 5yrs and the zoladex for 2yrs still though managing to keep vaguely sane ....i did find though different brands of tamoxifem did have different s effects
aps/teva made me even more tired with more flushes / sweats and palpatations with bigger mood swings whilst the wockhardt has a tendency to give me very crampy feet and keeps me awake more at night......I find it can be a trade off with the side effects with the brands.....I decided to stick with the wockhardt as couldn,t face trying any other brands with coping with the zoladex too..
j

stargazerlily
Member

Re: Tamoxifen (part 2) HELP!!!!

Your really welcome, I was so worried when I saw you were taking that.

SGL xx

Kimbers
Member

Re: Tamoxifen (part 2) HELP!!!!

thank you SGL, will take the appropriate steps of contact and see what can be done.....all the best to you x x x

stargazerlily
Member

Re: Tamoxifen (part 2) HELP!!!!

Kimbers, I dont want to worry you but I was told by my doctor that taking prozac or seroxat interferes with Tamoxifen. I think you should probably phone up the BCC helpline and ask for their advice. Really dont want to think of you putting yourself at risk.

Please read this.

http://www.womensmentalhealth.org/posts/interactions-between-antidepressants-and-tamoxifen/

xx

Kimbers
Member

Re: Tamoxifen (part 2) HELP!!!!

Hiya, I too am on the Tamoxifen, just started 10 weeks ago, having flushes, which are getting worse, my emotions are crazy, but trying to keep it all inside......I feel abandonded by my close family, as now the surgery and radiotherapy is over, they think I am alright......my doc has put me on Prozac, to try and alleviate the flushes, but not working as yet, well....they are not so intense but still there, all the way through the night, im tired, and at the end of my tether......i cant even think of a positive right now.......sorry....am no help at all, just thought I would have a moan......laugh and the world laughs with you, weep and you weep alone,(Ella Wheeler Wilcox), thats truly how I feel.....so damned alone.

stargazerlily
Member

Re: Tamoxifen (part 2) HELP!!!!

Hi ladies, I am sorry to hear that you are all suffering too with this. It really really is horrendous. I was thinking of trying the evening primrose route, but not sure if I will bother now.

I feel a tad calmer today, but the last week I have been like an ogre.

xxx

trish1968
Member

Re: Tamoxifen (part 2) HELP!!!!

hi sgl another pmt head on tamoxifen here , it`s a nightmare isn`t it ? the sweats at night are doing me , i`m constantly exhausted , i am taking the evening primrose and starflower oil combi ( recommended by my onc ) and on day 9 now , cant say i have noticed any change yet ,my moods are so volatile and i am screaming in my head whilst trying to stay calm on outside , cry ? i could cry at the drop of a hat , seeing my doc tonight cus my underarm skin broken down ( finished rads last fri ) and going to have chat bout tamox, seriously if it carries on like this i`m coming off it cus i cant feel like this all the time xx

RoadRunner
Member

Re: Tamoxifen (part 2) HELP!!!!

Hi SGL

I had a similar experience a few months ago, although for me I am sure it was down to the poor sleep I was getting with the hot flushes that went mental for a while. I was waking every hour or two, totally exhausted, and turning into a screaming monster at home and feeling like I wanted to cry all the time at work. I am now taking citalopram to help with the hot flushes and everything has calmed down again, I feel human again. I tried amytriptiline first but that made things worse, so it really is a question of trial and error till you find something that works for you.

You could try taking menopace (from Boots), although you may want to check with your onc first. This is a bit contraversial as it has phytoestgrogens in it, but it has also helped me. My onc said it was safe to take as long as I am on tamoxifen, but not to tell the pharmacist in Boots as they wouldn't want to sell it to me.

You really need to find something that works for you, as you need to keep taking the tamoxifen as it is such a wonder drug.

I think the message to take on board is don't give up - you will find something that works for you but it may take a few months of trying different things.

As an afterthought - has the brand of tamoxifen you are taking changed? Although the active ingredient is the same, different brands use different bulking agents and these can produce different side effects. It's not a question of one being better than another, but that each of us reacts differently to these ingredients and you have to work out for yourself which one suits you best and then stick to it (I have a standing instruction with my pharmacist to get me APS).

queen_of_retai
Member

Re: Tamoxifen (part 2) HELP!!!!

Hi SGL
As i've said before i have been on Tamoxifen since Jan and have next to no physical SEs but I did feel as though I had very bad PMT for quite a while, this is totally normal and will settle down BUT along with Tam and its effects you have had so many other things to deal with recently that would turn the average non Tamoxifen-taking person into a blubbering, screaming wreck!!!
Please don't be so hard on yourself, cry when you feel like it and scream when you need to ( I used to do this in the shower, still do sometimes!) it's always better than trying to keep it all in
sending you a hug and lots of love x

RevCat
Member

Re: Tamoxifen (part 2) HELP!!!!

Oh Stargazerlily, you are really going through the mill at the moment - I think I'd be close to, if not already, blowing a gasket Tamoxifen or no Tamoxifen. Whilst I haven't had this side effect (I just get frequent drownings and boilings) there have been others posting on here to say they do have this kind of effect. Opinions vary on what to do to counteract effects, but certainly some use OEP quite successfully. Because we are all unique and even medics have different views on saftey and efficacy, I can't comment on your own (medical) needs here. But this is something some people have to endure, and you aren't alone. I am sure someone with something more useful to say will be along soon.

Big hug - for what it's worth - and hope life starts to treat you more kindly.

supertrouper
Member

Re: Tamoxifen (part 2) HELP!!!!

Poor you - I haven't started on the Tamoxifen yet so cannot comment on this side effect. But what you are describing sounds like a perfectly understandable reaction to stress and worry. And no wonder! When I start to get worked up about something I try and take myself off somewhere quiet and concentrate on my breathing. I find meditating/visualisations very helpful but that isn't everyone's cup of tea. And maybe you need to thump a cushion - because life can be horrible at times - but also try and see the good stuff.

Hope you start feeling much better soon.

Deb

stargazerlily
Member

Tamoxifen (part 2) HELP!!!!

I started a thread asking about Tamoxifen and others side effects. Mine werent too bad, well until this week.

I have turned into a hysterical monster, who is crying one moment, screaming at hubby the next. I feel like I have really bad PMT and am so stressed out its not true. I feel angry alot of the time and its really not nice. It hasnt helped with the extra worry of mums mammogram and hubby working for the met police with all the terrible things going on, but its not just that, I just feel like I want to blow a gasket. I spoke to gp today and she said this does happen sometimes, and to try and take evening primrose oil and hopefully it will settle down.

Has this happened to anyone else? Please someone tell me I am not the only one and that I am not going mad!