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
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
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…
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
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?
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
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.
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.)
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.
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
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.
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.
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
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
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
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
Please do not be influenced by anyone who suggests that yoga and meditation are any kind substitute for 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.
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
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I also see my tamox as my safety net and dread the day i am told to stop taking it!