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Considering stopping tamoxifen

74 REPLIES 74
ladybowler
Community Champion

Re: Considering stopping tamoxifen

Teresmary

 

It is only early days on tamoxifen and the initial se do tend to settle down.  The other thing to think of is what time of day you take it to see if that will help, I take mine at 9am.  What brand are you on as well as sometimes the different brands give different side effects as it is apparently down to the coating on the tablet.

 

Please speak with your onocologist before you make any decison with regard to stopping it as this little tablet is important to protect us from recurrences.

 

Helena xx

Teresamary
Member

Re: Considering stopping tamoxifen

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
MenoMonster
Member

Re: Considering stopping tamoxifen

I had awful side effects with this medicine. I had to talk to my hormone replacement doctor to ween of the medication before I got switched to a new one. Supposedly people get great results with it but I couldn't handle the side effects!

Kimbo1962
Member

Re: Considering stopping tamoxifen

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

Nakita
Member

Re: Considering stopping tamoxifen

Hugs to you, I'm glad I found this forum alos, so tired and yes tired of being tired... I am a very active person.. So I have just pushing myself but wear out.. 1 week off Tamoifen I will let you know
Nakita
Member

Re: Considering stopping tamoxifen

Yes I have, or have the signs of infection but no infection just mimics it
Nakita
Member

Re: Considering stopping tamoxifen

Thanks, makes me feel better. I will, I hear trying a different brand might help. Thanks so much for your reply
Nakita
Member

Re: Considering stopping tamoxifen

it sure a side effect as soon as I went on it, I started to shed a lot, thankfully only after washing my hair, my hairdresser didn't have to thin, my hair any more
Nakita
Member

Re: Considering stopping tamoxifen

yes, I am going for a scope in Nov I will keep you posted as to what the urologist says.. its been awful. Its been a week off, so too soon to tell, I will let you know
Nakita
Member

Re: Considering stopping tamoxifen

Hi, No I have not, just getting very tired of the side effects. My Doc is going to watch me closer
Nakita
Member

Re: Considering stopping tamoxifen

Thanks So much will try that. I use to do flax see in my smoothies, I eat healthy, went vegetarian, I walk a lot and yes not over weight, when I went on Tamoixifen I started to have high blood pressure, Doc says I am doing everything right, and sleeping issues... so its been a week off.. well see
Nakita
Member

Re: Considering stopping tamoxifen

Thanks so much, I will try that.. still so at a loss if I am doing the right think

Moijan
Member

Re: Considering stopping tamoxifen

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
Jill1998
Community Champion

Re: Considering stopping 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 .
Nakita
Member

Re: Considering stopping tamoxifen

Hi 

Did you find a more holitic way?  I am just going off Tomoxifen and would like to know, thanks so much

Nakita
Member

Re: Considering stopping tamoxifen

HI  I just found this site, looks very helpful,  I just recently stopped tamoxifen and would like to know if others did also and their views,  I see that somone else had the same issue as me from day one signs of bladder infections, bladder pressure, pelvic pain, now my GP say my utiris is thickening giving me the pain also and this could be the tamoxifen. 

THanks in advance for peoples reply

Jill1998
Community Champion

Re: Considering stopping tamoxifen

Gabbi ,I know a lady who has recurrent urine infections on Tamoxifen .
Jill1998
Community Champion

Re: Considering stopping tamoxifen

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 .
ann-m
Community Champion

Re: Considering stopping tamoxifen

Absolutely agree with you about GPs Moijan.
Wise words!
ann xx
Moijan
Member

Re: Considering stopping tamoxifen

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
ann-m
Community Champion

Re: Considering stopping tamoxifen

Hi Gabri,

It's possible the urine infections could be behind the back pain as they do go together & it's not surprising you've felt unwell with it all. 

I think lots of us feel we should be getting back to normal quickly, but after what we've been through, it probably takes longer than we think & it sounds like you've only finished treatment recently. 

So glad you're going to talk to your oncologist about it, as the tamox is doing an important job. 

Best wishes with it all

ann x

Gabii
Member

Re: Considering stopping tamoxifen

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!
Moijan
Member

Re: Considering stopping tamoxifen

Not bad, thank you. Tho the heat drives me cazy!

 

yes, you are spot on...a great site xx

 

Mx

ladybowler
Community Champion

Re: Considering stopping tamoxifen

Moijan

 

Hiya mate, how are you.

 

I have been playing in a bowl comp tonight so didnt get in until late.

 

I think you are right, at the end of the day it is down to our own personal decision but we need to be able make an informed decision with the facts in front us.  I remember I spent about six weeks just reading the posts on here before I finally plucked up the courage to post myself.

 

Helena xxxx

 

 

Moijan
Member

Re: Considering stopping tamoxifen

Hi Ladybowler...no new replies, but you know, sometimes there are silent readers xx

hope people find the chat helpful and go on to make brilliant decisions xx

 

Moijanxx

ladybowler
Community Champion

Re: Considering stopping tamoxifen

Moijan

 

I tihink there is a lot in what you say about brands, because I remember when I first came on here, I read posts on where ladies were saying about different brands having different side effects although the basic ingredients were the same, it was the add ons, e.g. the actual coating contents.  I have read about ladies changing the brand and the side effects they were experiencing eased tremendously.

 

I remembered that they were saying that the Teva brand seemed to be the best, so I specifically asked for that brand when I went to my GP for a new prescription.  She advised me to speak with the pharmacist, who is attached to the surgery, as there was quite a price difference Teva £13 per packet, generic brands £3 per packet.  When I spoke to him he was very happy to provide me with Teva and asked that I check my packet when I pick it up and let him know if they have put anything else in. So far so good I have always been given it.

 

I would say my se are minimal and certainly manageable. Some of them were quite noticable in the early months of taking it but even they have settled down now.

 

Helena

 

Helena

 

 

Moijan
Member

Re: Considering stopping tamoxifen

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

ann-m
Community Champion

Re: Considering stopping tamoxifen

Fantastic post, Moijan & thanks for posting it.
ann xxx
ladybowler
Community Champion

Re: Considering stopping tamoxifen

Moijan

 

Thank you and sending you loads of lovely hugs xxxxxxx

Moijan
Member

Re: Considering stopping tamoxifen

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💚💚💚

ann-m
Community Champion

Re: Considering stopping tamoxifen

Just to add my own point of view & I do wholly endorse what Optimissy, Moijan, Helena & Meri have said.

I too, was very apprehensive about starting tamoxifen & my anxiety about it at the time was not helped by reading about side effect problems, which quite understandably would be posted here. 

After overthinking it all, I started my tamoxifen & yes, I've been fine on it over the past year.

As ever, the only way to find out is to suck it & see!

Wishing everyone the very best with their decisions.

ann x

Meri
Member

Re: Considering stopping tamoxifen

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.

 

🙂

 

 

ladybowler
Community Champion

Re: Considering stopping tamoxifen

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

Optimissy64
Member

Re: Considering stopping tamoxifen

Maximilliana (and others) I really do understand people coming off a hormone drug if they have been struggling with severe side-effects which so badly impact on their quality of life that, having tried alternative hormone treatments to no avail, coming off the drug seems like the right decision for them. What I am finding harder to understand is a decision to not even begin taking the drug for fear of side effects. This forum, as well as being hugely supportive and informative, does however have the "side effect" that problems with treatments can, understandably, be posted, with fewer posts from people who have had little or no impact from hormone therapy even after many years. Surely it's worth a shot to see how the Tamox affects you? I respect anyone's decision to have control over their treatments and do not wish to seem to be criticising those decisions, but as a previous post suggested, make sure you have done your research and that your decision is well-informed. I guess my post is prompted by caring concern, so tell me to bog off and mind my own business if you like!!!  I wish you all well with whatever route you travel. xxxxxxxxx

Moijan
Member

Re: Considering stopping tamoxifen

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

Arubafun30
Member

Re: Considering stopping tamoxifen

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?
Arubafun30
Member

Re: Considering stopping tamoxifen

What are you going to do? I stopped taking tamoxifen too.
Maximiliana
Member

Re: Considering stopping tamoxifen

Thanks ladies for posting to this thread. 

 

I've made the controversial decision not to start taking tamoxifen. Its very much the right decision for me but I'm feeling sad about disappointing the Dr. (I know, right?) I do believe that my Dr. has my best interest at heart but I have to follow my own conscience.

Arubafun30
Member

Re: Considering stopping tamoxifen

Mimi

i just took myself off tamoxifen also. Starting.  Dim to help control estrogen. I'm 63 I was always active outgoing. On the estrogen blocking drugs I have become totally inactive due to joint pain every where. I started on tamoxifen a year ago after two weeks my lungs were filled with blood clots. Tried two other estrogen blockers joint pain so  severe I could  barely get up from a chair without help. Now I'm on blood thinners so 2 weeks ago my one leg became swollen to the size of a small tree. Rush back to er no blood clots. They er insisted I must have fallen or something an hurt my knee. I didn't. This all came on while sitting in a business meeting. My onc says we can't prove tamoxifen caused this unless. We try the drug one more time. I can't I spent 5 days on  crutches this is the sixth day and I still cannot bend my knee 100%. But at least I can walk. 

Moijan
Member

Re: Considering stopping tamoxifen

Hi Charys, and Mimi

 

have pmd you bothxx

Charys
Community Champion

Re: Considering stopping tamoxifen

hello Mimi, I did see your post when you first made it, but forgot to reply as was dashing at the time. so, you are seeing your oncologist today...I would be interested to know what the outcome is of your GA and tamoxifen discussion. I do hope you are starting to improve ?

mimi_lexter
Member

Re: Considering stopping tamoxifen

Hi, 

This is my first contribution on this site.  

I had a skin saving Mastectomy left side only September '16 with immediate implant reconstruction (not enough fat on me to consider any other option).  Oncologist put me on Arimidex & then Exemestane, both resulted in awful side effects, so with his agreement I stopped.  

My DEXA scan then revealed Oesteoporosis, which was a massive shock to me.  My two sisters (aged 62 & 65) rushed off to get a scan & turns out both of them have really good bones.  

Oncologist wasn't happy with me not taking anything so I agreed to try Tamoxifen.  I thought this was only for pre-menopausal women due to the risk of Uterine problems & at 57 I'm way past that.  I started taking it early March '17.  Hot flushes, cold night sweats & dizzyness ensued.  I then had further surgery to remove the 'port' from my implant 13 April.  SInce then I have had really awful dizzyness & nausea.  I was advised last week to stop taking the Tamoxifen until I see Oncologist again on Friday.  Apparently I should have been told to stop taking it whilst undergoing another General Anaesthetic?  Symptoms have not gone completely & I think it may be the GA that has caused it.  I've taken to wearing the anti-sickness travel bands on my wrists.  They advised me to get my eyes checked & Optician said that they have to check you regularly whilst on Tamoxifen as it can cause some sort of 'build up'?

I am liking these tablets less & less & think I may make the decision on Friday to stop completely & also go down the more natural method path.  

Charys
Community Champion

Re: Considering stopping tamoxifen

Hi Vanessa,

 

are you having problems on tamoxifen too? I'll be honest with you, I'm not on tamoxifen, as was very ill on it and was taken off it....but I wish I was able to take it for the additional peace of mind. How long have you been taking it? 

Vanessa46
Member

Re: Considering stopping tamoxifen

Essiac Tea is supposed to be very good and completely cleanses and rejuvenates the system
Vanessa46
Member

Re: Considering stopping tamoxifen

Hi I'm considering coming off of Tamoxifen too, Ive been researching more natural ways to heal. Im going to take it for one more week and then try a more natural method, I will let you know how I get on x
marydan
Member

Re: Considering stopping tamoxifen

Thank you so much Ann, I am seeing the m.s nurse on Monday and will ask them for their advice and also I will ask the nurses on this forum too. Thanks again, Mary xxx

TheGen
Member

Re: Considering stopping tamoxifen

I have been on Tamoxifen for five years in May with a year on Anastrazole which was dreadful. However, the last five years have generally been awful in respect of my quality of life and my once has agreed for me to come off Tamoxifen when I see him next month because of the list of side effects I have been enduring for all these years. I was expected to go on for 10 years but asked to push onto five and we settled on this to give myself the best chance. I think there is always that 'something' in the back of your mind about the cancer returning, but I like to think I've done what I've can for five years and would like to try and live my life a little now...  only a few more weeks now - counting them down ..... fingers crossed for the future 

ann-m
Community Champion

Re: Considering stopping tamoxifen

hi Mary,
Sorry to hear the back pain is still a problem.
Seeing as loads of us have had breast mri's to detect any cancerous changes, I would have thought that the MS changes seen on the mri, are just that & nothing else sinister was seen. But, it might be an idea to double check with your team or maybe 'ask our nurses' on here.
ann x
marydan
Member

Re: Considering stopping tamoxifen

Hello to all my friends and hope you are all doing as well as can be.

I am hoping you may be able to help.

As you all probs know by now I am on tamoxifen and have m.s also.

I am having really chronic back pain  which is severe in the morning on getting up but does ease slightly during the day. It is hard to know if it is the m.s as the neurologist said the lesions on my spine may well be causing it or could it be the tamoxifen or something more sinister?

.

I did have a spinal mri in dec which showed the lesions on my spine caused by the m.s I am wondering would they be able to see cancer from an mri?

Sorry to bother you all but I am kinda scared.

Thanks for reading guys. Mary xx

worrier
Member

Re: Considering stopping tamoxifen

I'm on Tamoxifen since March and the s/es seem to increase over time. Thinking of coming off it but will try for 3 months. I worry about my liver and kidney. I'm not sure the benefit is definite, there is no guarantee that BC won't recur even if on Tamoxifen ..