67.2K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Seriously considering giving up Tamoxifen

43 REPLIES 43
Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Hi Beverley

Thankyou for the info. Hope it's gets better soon sounds painful. As if we don't have enough to deal with.
Thanks again

silver x

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Hi Silverjill
Trigger finger is a problem with the tendons in your hand that makes your fingers and thumb bend. Your tendons run in sheaths/tubes and these tubes can become inflammed and narrow. When this happens your finger becomes stiff and is difficult to bend. If you do bend it, it will become stuck as if you are pulling the trigger on a gun. Problem is, as it gets worse the only way to unbend it is to physicaly pull and straighten it which is pretty painful. It developed in my thumb. Where the thumb joins my hand you can feel a hard swelling. Ive had an x-ray and went to see a hand surgeon. He told me that there are 4 options do nothing and put up with it. Physiotherapy 10% successful. Monthly injections 30% successful or surgery 100% successful. By the way the surgeon did not know about link with arimidex. Hopefully treatment is academic as my problem appears to be improving by the day.

Hope info helps.

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Beverley when you say trigger finger what do you mean ?
My index finger keeps moving like there is a nerve trapped!

CheshireCheese
Member

Re: Seriously considering giving up Tamoxifen

Thanks Beverley, that has given me hope. I have become so used to waking up 2 or 3 times each night that it has almost become normal. I now realise that what I've come to accept as "normal" isn't, and there is life beyond Tamoxifen (and Zoladex in my case). Being able to get a good night's sleep on a regular basis is my holy grail!

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

That's very encouraging news Beverley, Thankyou. and congratulations!

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Hi All
Havn't posted for ages but thought my experience may help those with SEs. Diagnosed in 2006 lumpectomy lymph node removal tamoxifen for 18 months then arimidex. Not many SE at first but hot flushes and then gradually my feet became very painful especially in the morning. Like really bad bruises on soles of feet. Also last May developed trigger finger in my thumb. Mentioned to Onc in Aug (surprise surprise dismmissed it and didn't think it was a SE) but as my five years was up he took me off all drugs. That was great feeling. Three months on, now December I visited a hand surgeon because trigger finger was not getting any better. However just after Christmas I realised my feet were no longer hurting and last week I realised the trigger finger was getting better so looks like no more surgery. I do have mild lymphoedema in my arm and am having pain in my upper arm muscle. I'm wondering if this may be due to the elasticated top on the sleeves contristing the muscles.

Any way give your body time to recover when coming of tablets. Oh and I am sleeping much better now. Used to wake up two or three times a night

Beverley

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

I stopped 6 weeks short of my 5 years purely becasuse I couldn't be arsed to go to GP for a pack and a half when I have been told by Onc that it takes 3 months to come out of system - I was also being made redundant after 17 years and looking for new work so decided to come clean with drugs and work same time. (you know that inner good cleansing feeling) I have been through every side effect and some of them have had me in tears on quite a regular basis, head butting the wall staggering out of bed with stiff joints - very painful bleeding sex - hairy face/toes, itchy scalp, screaming, cursing and crying at hubby and kids for no good reason - in the end my GP suggested I swap brands every 3 months to only skim each side effect and therefore try and build tolerance - it did ease effects (it didn't erase) am now roughly 6 weeks off - had headaches and that nasty pregnancy metalic taste to start with - still feel very lardy especially around back, hips and organs - still cramping although I do think this is easing - will wait another 8 weeks then have blood tests to find out menapause status - my onc is very straight and blunt - she beleives tamoxifen is a wonder drug and to be quite honest I go with her - she knows her stuff. Debs

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Hi Alex
How are you finding things on half a tab?

alexamay09
Member

Re: Seriously considering giving up Tamoxifen

Stopping tamoxifen is very much an individual decision dependant on a plethora of factors. For some people the side effects are very difficult to cope with. In addition, it does not make a great difference statistically - I recently read of 46% recurrence without tamoxifen and 40% with. Fair enough if you are in the 6% that benefit. The drug also has a fair number of effects that are not so great. My compromise is to take a half dose these days. I feel I'm still getting some protection. I dislike the 'one dose fits all' prescribing of tamoxifen. I weigh under 8 stones but my prescribed dose will be identical to someone twice my weight. It is certainly a thorny issue and sparks some strong feelings, but I do have sympathy with people who find that their quality of life is so severely affected. When you are trying to hold down a full time job and everything else, it can be psychologically crippling when you have chronic insomnia, horrible night sweats, painful cramp etc.

alex

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Just had a call-back from my onc's secretary to tell me that an appointment is booked for the 17th and meanwhile not to beat myself up about not taking the Tamoxifen, that the onc will help find a management programme that allows me to have a reasonable quality of life.

moorcow
Member

Re: Seriously considering giving up Tamoxifen

HI there, I really hope the Onc can help with some solutions - being a carer is hard enough without being a carer with no sleep and no mood control button anymore...fingers crossed for you, Nicola

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

I haven't taken my Tamoxifen for the last 3 nights.
I'd developed a horrid tummy bug, and that on top of a painful frozen shoulder and the Tamoxifen SE's was too much.
I need to see my oncologist asap - even after 3 missed pills (and tonight will be the forth), I feel so much better. I actually managed 3 consecutive hours sleep last night. Normally I wake at least once an hour blazing hot. And my head feel calmer - the constant dread and bursts of panic have gone. I haven't sobbed for 2 days. I can hold a rational conversation without bursting into tears.
I swore at the begining of this 'journey' that I would do anything and everything to battle this bloody cancer - I have a disabled daughter who needs me. But I am on my own and unable to care for my daughter if the hormone therapy is depriving me of sleep and sanity.

RoadRunner
Member

Re: Seriously considering giving up Tamoxifen

While side effects lessen over time for many, they don't for everyone. I am still suffering from hot flushes and lack of sleep over 3 1/2 years into tamoxifen. It is very hard to live with.

Daisy_do
Member

Re: Seriously considering giving up Tamoxifen

The SE is a way of letting you know that the Tamoxifen is working. I too had terrible headaches, nausea, joint pain, weight gain, tendonitis and you name it I had it.

What I do want to get over is:

:the side effects seem to change over the period of time
:used to live on Valoids for the nausea but that lasted a few months only
:the joint pain eased enough in the ankles for me to walk to exercise
:although I was post menopausal I had all the symptoms of repeating
:I lost weight while exercising and eating carefully
:lost the headaches, nausea and general brain confusion
:I gained back so much of myself
:I have smear tests every 6 months

I am now two years down and I know that seems an age I am so pleased that I persevered and feel more confident now.

I know that I could get any number of weird symptoms but I do think that the "keep moving" and eating well is key and that sleeping for long enough does wonders.

I hope you all find your way with this tablet and things get easier and you live happily and healthily with smiles and laughter and peace of mind.

elinda45
Member

Re: Seriously considering giving up Tamoxifen

I don't think there is an alternative drug for anyone who is premenopausal (please someone correct me if I'm wrong). Aromatase inhibitors are only suitable for post menopausal women.

I think it is about constantly weighing up the side effects with the help they may be giving us. Also remember that many of these symptoms might be related to going into menopause or hormones changing. My hormone levles have been up and down like yo-yos since chemo.

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Sugery, Chemotherapy, Radiotherapy - ok... I expected to feel dreadful to some degree, but I thought that on the Tamoxifen, life would start to become tollerable. At least once an hour I have a flush which is accompanied with a dreadful sense of panic. Constant fatigue, 'brain fog', accute depression. Is this what I have to live with for 5 years? I am happy to read here that there may be an alternative drug, but am scared that if it isn't the 'gold standard', it won't be as effective.

belinda
Member

Re: Seriously considering giving up Tamoxifen

Just here to mention I too loved my Tamoxifen and Arimidex pills. I was diagnosed stage 4 from the very beginning. Tamoxifen and Arimidex gave me 5 and a half years of stability and for the most, the great part of that time no detectable active cancer. I now love my Capecitabine/Xeloda pills which have also worked so well. Yes I have had some side effects but I'm so, so grateful I've now been living well with secondaries since my diagnosis 8 years ago.

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Hi, I know it is difficult if you have SEs and it seems like these will go on for such a long time. I am lucky that so far - three months - I'm not really having SEs, but even if I were, I would take them. My onc was clear that hormone therapy for ladies with hormone positive bc is a very important weapon in the armoury. If an onc says swap one for another (or whatever) fine I would be happy if I needed to, but I am also in the camp that I am so glad that I have the chance to take this and improve my chances of staying well x

cornishgirl
Member

Re: Seriously considering giving up Tamoxifen

Give up Hormone therapy ? Me Never!!
I too loved Tamox and Aromasin and now i love Arimadex even though im sat here with swollen feet,had the usual leg cramps wake up each and every morning with sore stiff fingers and painfull joints and to top it off have horrible regular Migraines,but who cares,i dont im here and im thankfull for that!

If someone had said to me when i was first DX and terrified here is a pill that you can take for 5yrs , even though it may cause you some crappy horrible SEs but...... it COULD SAVE YOUR LIFE and is your best chance at surviving this vile desease (and it is because as we all know there are no second chances with BC),would i question it? not on your nelly.But thats just me!
I just thank God that ive been given the oppertunity to take it,some ladies here dont have a choice.

Caron Keating bless her refused Tamox in her never ending quest of every ALT charlitan going sadly she was duped till the end.

Its a personal choice though and as long as ladies are able to make decisions knowing the potencial risks involved vrs the SEs then for them it may be a risk worth taking.

Not an easy decision for anyone i guess.But have a chat with your onc to see if he can help with the SEs.

Good luck
Linda x

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

hello ladies... i too suffered terrible side effects with tamoxifen, massive weight gain , endless tears, fuzzy brain aches pains and horrid hot flushes, my onc passed comment about my weight gain and asked how i felt , i burst in to tears and said like this,,,dreadfull.. he said he would like me to come off tamoxifen,,i went hysterical and begged him to keep me on it, as i was terrified without it ,, the cancer would come back, .. he explained that he had a box full of tricks,, and he was not removing me from the hormone treatment , just juggling the medication about untill he found the most suitable for me.he prescribed aromasin.. so i stopped tamoxifen and started aromasin... hey presto.. some of the weight ( excess fluid ) has gone, i dont constantly burst in to tears. my head is no longer fuzzy i can think normally and once again feel so much like my old self.. im no doctor but i believe it could be dangerious just to give them up , have a word with your onc and see if they recomend changing your tamoxifen to something else.. it worked so well for me, .yoga etc could help yor overhall mental well being as i think any exercise will , but it is not protection from cancer,, good luck whatever you decide x

juliet66
Member

Re: Seriously considering giving up Tamoxifen

I too loved tamoxifen.

I did not like the way it made me feel. I put weight on and felt depressed.

However it is nothing like the depression I know feel knowing my cancer is incurable. I have mets in my lung and spine.

My cancer came back a year after stopping tamoxifen. I only stopped because I had to, as I had been on it for 6 and a half years.
I also tried anything I could in terms of diet and therapies.

julie

JulieD
Community Champion

Re: Seriously considering giving up Tamoxifen

I know tamoxifen can be a real pain but like the others, I saw it as a safety-net and an insurance policy. Of course nothing can guarantee cancer not coming back but tamoxifen has a pretty good track record of keeping it at bay.
Try things like primrose oil, chilow pillow etc before thinking of giving up.
Hope things become more bearable, good luck!
Julie

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Gretchen - perhaps you should re-read your initial post because that is not really what you said. After saying how well you felt after quitting Tamoxifen you went on to list all the things you now do to "make up" for it. Nothing can "make up" for Tamoxifen.

Why anyone would reject hormone therapy when the stakes are so high is beyond me.
There are so many women who are Triple Neg who would give anything to be able to add another weapon to their armoury.
There is no going back with cancer. You only get one chance to kick its a**e. If it returns it won't be a simple primary - it will most likely be mets. Utterly incurable. You jump straight to Stage 4. And that is that. No second chances.

For god's sakes keep taking the pills. 5 years of discomfort now could buy you many happy healthy years ahead.

This link might be of comfort for those who are worried about stopping Tamoxifen. Tamoxifen continues to protect you long after you have stopped taking it:
http://www.cancer.gov/clinicaltrials/results/summary/2007/tamoxifen-update0307

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

have to agree with moorcow and lolly,got 19 more rads to go till active treatment finishes. i view my tam as my safety net too! night sweats can be a pain but guess i was gonna get them in 10 years or so anyway?!alex xxx

lolly73
Member

Re: Seriously considering giving up Tamoxifen

I also see my tamox as my safety net and dread the day i am told to stop taking it!

moorcow
Member

Re: Seriously considering giving up Tamoxifen

HI everyone - just thought I'd add my ruminations. I actually LOVE my tamoxifen, I feel protected by it. I have very low energy and very frequent (8-10 per day, 4 -6 per night) sweats when sweat is actually running down my back/front. However I feel grateful that we are able to take Tamoxifen, as so many women (and men) can't. It kept my aunt alive for 30 years -( she lived in the US and they have a different regime but she was on and off it for years and years and originally had a very poor prognosis).
I too exercise much more than I did but am in awe of Gretchen's diet - wow girl your body really is a temple!!
The side effects made me feel really angry to start with but now I love my drug....
just thought I'd share my turn around, we all need to do whats right for us really don't we.
best wishes, Nicola

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Ms molly

I am not suggesting simply yoga and meditation are a substitute for tamox. Cancer is a multi-faceted disease and so healing has to be multi-faceted too. Yoga and meditation help energy flow and wellness, it many only make a very tiny difference, but at the very least it makes me happy and open-minded.

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Please do not be influenced by anyone who suggests that yoga and meditation are any kind substitute for Tamoxifen.

vivrog
Member

Re: Seriously considering giving up Tamoxifen

Thank you all for your replies....Wow I'm glad in some ways I'm not the only one suffering but obviously sympathise with you all too.

I am 47 so yes I could just be naturally Menopausal. I started on Wockhart but changed to APS due to legs pains. My SEs are certainly increasing rather than lessening.

I will see how I get on over the next few months. I am due to see my Onc in September and may make a decision then if no better.

Much love
Viv x

davida
Member

Re: Seriously considering giving up Tamoxifen

VIV
Hello,
Just a thought,have you read the thread about different brands of Tamoxifen.My side effects were so awful on the Wockhardt brand.Not nearly as bad on the APS brand.Might be worth trying a different brand.Hope you feel better soon xx

Tiny_Tina
Member

Re: Seriously considering giving up Tamoxifen

Hi Leadie,

I found your post interesting.
I was diagnosed with idc, tumour was 7mm, stage 1, grade2.
Do you know what your eostrogen levels were.
Tina
x

xxchrisx
Member

Re: Seriously considering giving up Tamoxifen

Hi viv
Your se's sound just like mine.
I wasn't to bad when I 1st started tamox in sept and just had hot flushes and sleeplessness.
Over the last 3 months I feel like I'm going mad. I feel like I can't function and even though it's not a headache as such my head always feels fuzzy especially in the morning. I feel like I've got a permanent hangover.
I've thought of giving up tamox but decide against it when I think of the consequences that could happen.
Chris xx

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Dear Viv, I too came off tamoxifen, was only on it a month but felt horribly ill and lots of SE'S.
Mine wasn't that hard a decision to stop, as i had a small grade 2 tumour with no spread and good prognosis anyway with a small ammount added with tamoxifen.
Like gretchen I now live a very healthy lifestye and feel as well as I have felt for years.

Tiny_Tina
Member

Re: Seriously considering giving up Tamoxifen

I have been giving some serious thought to giving up on Tamoxifen. I have had a constant thrush infection for the last 4 1/2 months, I usually get around a week of relief between treatments. I am at my wits end. I have asked the BCN if there was a chance that things might settle down but she just shrugged.

Like Gretchen I would love to feel alive again.

I have also gained weight, only 7lbs but enough to make me unhappy, the fatigue is there but not to a great extent, my concentration is not good.

I will discuss this with my oncologist but the thought of being like this for the next five years really doesn't appeal.

I so want to be the person I was before the cancer - not the person I feel I've become.

I think this is probably the lowest I have been mentally since diagnosis.

davida
Member

Re: Seriously considering giving up Tamoxifen

Gretchen,
i admire you for being able to make that choice and well done for having such a healthy lifestyle.
I have just come off two years Zoladex, i feel so much better,more energy,less fluid retention and weight loss.
Three more years of Tamoxifen side effects ugh,i often think about stopping the Tamoxifen.
We all have to make are own minds up regarding treatments and its not always easy. xx

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

I was 8/8 +ve so I am taking a huge gamble. For now I am loving actually living, not just 'being alive' that it feels right for me.

I have been off for a month BUT I stopped on the first day of a 7 day fast. My philosophy is about keeping my body clean, helping my organs to function properly so as to fight cancer on its own. I have a pretty good knowledge of nutrition having been interested in it for years and a truly eat a 80-90% raw diet.

I'm not advising anyone, just sharing my decision.

ChoccieMuffin
Member

Re: Seriously considering giving up Tamoxifen

A suggestion to all - if you ARE considering giving up, please speak to your oncs before you do.

While Gretchen's situation seems to have worked really well for her and I'm not knocking it, that may not be the right thing for everyone. As we know there are so many different types of this stupid disease that what is brilliant for one could be disastrous for another. (And I'm only talking about the giving up Tam, not the other things Gretchen has done - really pleased your lifestyle changes are working so well for you.)

RoadRunner
Member

Re: Seriously considering giving up Tamoxifen

Gretchen,

How long after stopping did you feel better? I am considering taking a break for a month (been on tamoxifen 3yrs 7 months so far)as I can't deal with the hot flushes and lack of sleep anymore. I don't want to give up , but thought maybe a short break would help me to persevere to the five year mark. I am on holiday in July, so it would be nice to feel well & sleep well then. I am just wondering how far in advance of the holiday I should stop, to feel the maximum benefit.

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

I decided to come off tamoxifen about a month ago. I had been on it for 8 months and my se's were not even that bad. I feel AMAZING. Back to pre-bc energy levels (probably even better as I am taking so much better care of myself). I have been running every day this week, I even looked twice at the gorgeous 19 year old neighbour (lol), so I think I may even be getting my libido back!!

BUT BUT BUT I try and tick all the other boxes to make up for no tamox

Exercise every day
Yoga
Mediation
80-90% of what I eat is truly raw, organic, unprocessed food.
Dairy free
100% alcohol free
Meat only once a week maybe
Soy free
Eat loads of nuts and seeds especially flaxseed
Eat lots of home grown sprouts

Try and be very 'present' and not let the the small stuff bother me.

LIVE LIFE WITH HAPPINESS AND JOY

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

I'm struggling with the Tamoxifen too, and like yourself wonder if I'd be mad to come off it. I guess I'd imagined that after surgery, RT and Chemo were over, I'd start to feel normal. I am finding the physical and mental effects of Tamoxifen a real strain - when do I get to feel like myself again?

elinda45
Member

Re: Seriously considering giving up Tamoxifen

Viv, I do understand that desire to give up tamoxifen. I'm very similar to you in that I have a headache almost every day. Some days it's just a low grade one and other days I have to lie down and take codeine. I'm keeping a diary.
I often feel sort of spaced out like my head is in fog. I find it more difficult to concentrate and as for memory....
I have terrible fatigue which my Onc told me was probably the tamoxifen.

Is it also possible that you might be starting or going through the menopause? I was premenopausal prior to chemo, postmenopausal after and I'm now back to perimenopausal. I have had hormone levels checked every 3 months since October and they are up and down like yo-yos.

The reason I'm not considering giving up tamoxifen (apart from the obvious!) is that I'm not convinced it is the only or even main culprit. I think the hormonal changes are playing a big part in that too. Elinda x

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Keep taking it and take the highest doses of evening primrose you are allowed as it is really good at combatting the tamoxifen side effects. I have been on tamoxifen since March and now have no flushes at all, just occaisionally feel warm......

Guest user
Not applicable

Re: Seriously considering giving up Tamoxifen

Hi Viv

I am on letrozole for 5 years which initially gave me a lot of the se's that you are struggling with. I was also told to try Evening Primrose Oil, which has worked for me to a certain extent but I did find that it took several weeks to have any effect.

I hope you can work things out with your onc and your gp.

Good Luck

Andie

vivrog
Member

Seriously considering giving up Tamoxifen

Hi All

I am seriously considering giving up Tamoxifen. I finshed active treatment in September and have been taking Tam since then. I am increasingly feeling more and more unwell. I get the hot flushes etc but I also have a permanent headache, nausea and general blah feeling. I saw my Onc last week who advised that I take Evening Primrose which I have started and today I went to see my GP to get some Oestrogen cream for 'down below' and ended up bursting into tears...basically I want my life back! She has prescribed a low dose of beta blockers to help with the headaches which she says are hormonal and I am to go back to see her in a month to see how I go. I know I will have to give these things a try but at the moment I just wish I could feel normal.....rant over!!

Viv x