What are you going to do? I stopped taking tamoxifen too.
Going to do the same. Please keep me up dated. I’m going to start with Dim. To help block estrogen. What are you planing to use?
Hi Ladies,
good you are makng your own choices.xx
just make sure that you each know the odds of stopping. I took myself off letrozole, in those days they hadnt realised that we should be on those drugs for 10 years.
find out everything you can for yourselves.
i wish I had been informed that if/when the cancer comes back…they no longer talk about cure. Because there IS. No cure. I wish id known that i would be faced with each chemo drug until the cancer grew resistant to it…as it keeps doing, I wish id known I would be having a cannula in my arm two weeks out of three , which limits my travel and other plans. As do 6 weekly mri appointments and bone, ct’s etc,to monitor my liver and bone mets.
those days of independence, taking a small pill each day now seem like heaven…be sure before you stop.
best wishes
Moijanxx
I just wanted to add to what Moijan and optimissy have said.
I remember when I was given my prescription for Tamoxifen I sat looking at the box for a week, really not sure what to do, I was supposed to be on letrozole but once my oncologist saw the results of my bone density scan he changed me to tamoxifen which is kinder on the bones than letrozole. I am post menopausal at 59 years old so would have ordinarily been given letrozole.
I eventually starting taking it because there was a lady on here PollyP who was at the same point as me took hers so I bit the bullet and took mine.
That was seven months ago. Ok in the beginning I had a bit of a problem with constipation, sorted by making sure I had my cereal every morning and having a dish of fruit and yoghurt. I do get a "lovely"hot flush about an hour after I take my tablet in the morning. Some days I have several “warmer” moments, this is a little more than I had during my menopause. I did feel a bit emotional when I first started it but even that has settled down.
I think what I am trying to say is the old saying “if you dont try you won’t know”. I am of the mind that this little tablet to helping to prevent a recurrence and that is a small price to pay. I am not a massively active person, was born with Spina Bifida so although completely mobile I do have issues, I do have a passion for lawn green bowls which this has not stopped me doing.
I too would say make sure you are making a fully informed decision but at the end of the day it is your choice.
Helena
Hi, I still sticking with Tamoxefen.
Five weeks now.
Have been challenged but with help from herbalist, BCN, helpline and here finding ways to offset some side effects.
I am finding Ladycare magnet reducing intensity of hot flushes so far 
Got nausea and indegestion, trying various things for this, it does seem to come in waves and I find is intensified if I take ther meds, like antibiotics.
I was thinking this is not worth it, yet met some amazing women who have stuck with it and found side effects lesson after three months. And my adult son asked me try for three months too.
I think my fear of cancer returning outweighs fear of drug, though I am struggling.
I am 61, been through natural memopause, had bad anxiety with that.
I am wheelchiar user with spine injury.
I feel I must try this so if I do eventually decide to stop, amd cancer returns, I will be ok about it.
We all so different, so we may have to find differnt ways to cope.
Talking to others really helps work it through.
Yes, Merri, ladybowler and others.
when I had my primary, i was given a less than good prognosis and initially told it would come back within two. Years. I was on treatment for about 7, then told I could stop. At that time, they knew a lot less than. They do now, and noone told me the facts; eg that when in returns it is incurable…and that is still the case, no way to sugar coat this…at present it is incurable!
we on the 'secondary breast cancer ’ boards tell first time ladies to go away and not think about us…because we are the less fortunates and want you to go and have a happy unworried life.
however, I sometimes wonder if we do you a diservice by not reinforcing the risks out there…yes, make your own choices, come off treatment if thats what you think is right…but please, please, think very carefully…quite honestly there are thousands of us incurable, secondary ladies out there in the UK.
We have to jump through hoops just to get the disease controlled and a lot of us find that we are put on treatment after treatment knowing that in the end, there may well not be - that next treatment…
we cost the nhs lots of money - and so useful chemos are financially limited by Nice…drugs that could give us each a few more months…
you primary ladies must be made aware of the risks and benefits of your choice and I wish you well xx
moijan???
Fantastic post, Moijan & thanks for posting it.
ann xxx
Thank you ladies xx
i was thinking about this topic again…and it is an issue that arises with ladies on letrozole too.
what they find, is that each time they go to cash their prescription for pills, they get issued with a different ‘make’ obviously the action of the drug is the same under any make, but each drug company puts in different additional things like, buffers, preservatives etc etc, and so some ladies get side effects to those extra bits.
an added problem is that the original version is usually more expensive…,£90 p.m. In the case of novartis, as opposed to a range between £2 to £9 for a months supply from the other companies. The pharmacists tend to compete for the cheapest products…,.,though I found Boots often have access to the original
version.
anyway, ladies get fed up with side effects of some versions of letrozole and guve up…rather than requesting the pharmacy to access the version which suits them best…
Would it help, do you think, to suggest ladies hunt for their best suited version of Tamoxifen?
have you yourselves noticed a great difference between versions? Tamoxifen has been hailed as the ‘gold standard’ for Oestrogen pos ladies, when it was discovered,the survival rate rose dramatically.
i recall being on a trial between Tamoxifen and Letrozole, and tamox gave me spotting pv…but that was the only sude effect I had!
best wishes
Moijanxx
Hi, I had a grade 2 and lymph removed plus Radiotherapy. I’ve been on Tamoxifen for 2 months and starting to feel pains on my back, urine infections plus lately a sore feeling in my mouth. I dont know if some side effects started from an antibiotic caused some rash and small lump on tongue. So much to deal with and starting to wonder if I should go off Tamoxifen ( and deal with choice of course). Im glad I found this forum. Now I ll ask my oncologist to advice me according my case. I am tired of being tired and feeling unwell most of the day and treated by gps as anxious and stressed. Does anyone shares same experience? Thanks!
Gabri,
The only thing I can add to what Ann has said is - yes, sadly some gps do make us feel like over anxious patients - some are very overworked and stressed themselves and don’t have the special partnership expertise that we bc ladies really need from our doctors - however, that said, that IS their JOB and actually they are extremely well paid for doing it ! I also understand how intimidating it can be on our side of the desk - we need to remember that we are just as important as everyone else and if made to feel like an over anxious person -well so what? This illness makes us so - any any gp worth their socks will realise this - just be yourself, be assertive and try not to feel put down. We, all of us only have one life and must make sure we get the best xx
Much love, Mx
Absolutely agree with you about GPs Moijan.
Wise words!
ann xx
I think really GPs are a bit out of their depth with all the many side effects we potentially have to face .They can’t be experts on everything I guess .Mine told me hair loss wasn’t a side effect of Tamoxifen -got the leaflet out and showed her that it’s listed as experienced by one in ten people .
Gabbi ,I know a lady who has recurrent urine infections on Tamoxifen .
Nakita ,acupuncture and supplements have been recommended to me -vit d ,B6 ,fish oils ,flax seed oil and turmeric.Dont take flax seed oil at same time as other supplements .Good diet ,exercise and not being overweight also help .
Nakuru
I absolutely understand why you are stopping - but do chat to your onc about wether there is an alternativemed and check the risks of stopping v-v getting a recurrence. Not everyone gets one, but if they do - there is currently no cure for metastatic bc. I was on Letro for 7 years and was told I could stop - now I wish I’d persevered. Please check it out xx
moijanx
I stopped taking tamoxifen after only taking it for a few weeks.
The side effects were awful, and my oncologist said I had to weigh up the chance of it coming back, which he assured me was low, to my quality of life.
I’m just waiting to hear back if I can have a different drug, as I might already be menopausal.
But I think it’s very confusing and quite scary
I’ve been taking tomoxofen for 8 weeks now and I’m having issues with sleeping and now struggling with eating , does this get better I’m really considering stopping it