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Support to stay on Tamoxifen - research shows women giving up ...

29 REPLIES 29
sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi Cornishgirl,
No offence taken and yes it is all a load of rubbish this disease is truly disgusting.

As for the women dx with a primary or advised to take Tami to reduce risk of ever developing breast cancer I would always say to try it out and give it a go like others have mentioned we are all different and this disease is so variable between all of us that you may never get any se its all down to the individual and I believe we all must try.
I also believe anyone taking tamoxifen needs support maybe some one to one attention from a BCN or someone who can help with the se and who understands what we are going through. Support is key to women staying on the drug or at the very least giving it a go. Sarahxx
cornishgirl
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi saralouise,  Massive hugs to you (((((0))))),  I hope my comment didn't come across as unsupported  to anyone,as I  really do understand how horrendous some of the SEs of cancer treatments can be sometimes , and we all react differently to different drugs   sometimes too. I can fully understand how you feel about quality of life issues and definitely agree  that its not always about risk vrs benefit, but also sometimes  and more impportantly about quality of life also. 

 

I think everyones situation is so different ,so everyone has to make decisions  based on their own current situation and also of course what's best for them, my only concern is  that any primary patients ,new to breast cancer. can often read about terrible SEs of any cancer treatment and be put off from even giving them  a go, most of the studies  show that the majority of   people  will do fine on Tamox. and i think we  proberably also need to  remember   that on a cancer forum people onlypost when they are having a hard time with a particular drug , but   at the same  time that there will be  many other ladies who are taking Tamox ,and are off living their lives so have  no need to post, I think its just putting everything into perspective  overall for anyone who is really worried about starting this drug.

 

I know that doesn't help those who are having a awful time on Tamox, and I really feel for you all,  so I really do hope this study brings about change in GPs and Cancer Drs attitudes  towards  people who are having a difficult time on Tamox, and can help them with lots of support so they are able to complete  their course of treatments, although Tamoxifen is taken for 5 yrs, it is said to give  10 yrs of protection, so its probably always worth exploring all avenues before giving up on them completely  ,  for primary patients ,we know that their best  shot at beating this disease is their first one ,so i would still really encourage them to talk to their med teams and get the help they need to help them to stay on Taxmoxifen if they can, but ultimately everyone has to make decisions for themselves  and be happy with their decisions.

I've just myself been on a 6 week break from Tamoxifen ,due to having further breast surgery , for me I haven't really noticed any difference in SEs which makes me think that any of the SEs I do have are probably related to all my cancer treatments as a whole that I've had over the last 6 yrs,  I think they all take their toll in one way or another, for me "personally" I shall be glad to start back on tamox next week as I feel kinda vulnerable and have no protection at the moment ,as I've finished  herceptin now so I'm just taking the Tamox, though I've been assured short breaks of Tamox will do no harm.  

Like everyone I truly hate this  vile disease and all of its treatments ,  its all rubbish isn't it.

 

All the very best to you saralouise , I really hope you can get some much needed relief from all your awful SEs very soon.

Linda xxx

 

sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi Cornishgirl,
and thank you for explaining Tamoxifen I sort of knew most of what you said but you put it in such a way that is easily digestible. This thread is based on some current media articles relating to women that give up on Tamoxifen early because their se are so extreme, I happened to come across one of these articles it was on Women's hour the radio four programme just at the point where I was thinking of giving up myself. I have not given up and continued on the drug and understand that it is or could be continuing to keep me stable as I am stage IV with mets to lungs. My problem with tamoxifen is the extreme se that I suffer on an hourly basis, its lead me to question whether I want quality of life over quantity this is a highly personal decision and one I wont make lightly I will continue to thoroughly research this and have decided that if the se don't calm down by next year then I will at the very least take a tamoxifen holiday for a month or so. I've already found that the Rexlon brand makes my se worse so am now on wockhardt or teva. I am in no way encouraging anyone on here to stop taking tamoxifen cornishgirl is right it is a tried and tested drug (been around for 30 years or so) it does work and is a relatively inexpensive drug. x
cornishgirl
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi saralouise,

Tamoxifen is a "Selective estrogen receptor modulators" or (SERMs) and binds to estrogen receptors preventing oestrogen from binding to cancer cells , (prevents oestrogen from feeding breast cancer cells).

 

Many breast cancers rely on the female sex hormone oestrogen to grow. These cancers are known as oestrogen -receptor positive (ER-positive) breast cancers.. Hormone-positive breast cancer cells have proteins called receptors, which sex hormones attach to.

When oestrogen comes into contact with the receptors, it fits into them and stimulates the cancer cells to divide so that the tumour grows. Tamoxifen fits into the oestrogen receptor and blocks oestrogen from reaching the cancer cells. This means the cancer either grows more slowly or stops growing altogether.

 

Hope this helps explain a bit of how Tamoxifen works .

 

Linda x  Woman Happy

 

 

 

 

cornishgirl
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

I have been on Tamoxifen twice in the last 6 yrs and fortunately have suffered few SEs , I do have hot flushes and some joint pain , leg cramps etc ,but I'm not so sure that those SEs are more likely lingering SEs from chemo treatments putting me into menopause in 2007.

 

 

I was wondering if any of you ladies had though about changing your brand of Tamox ?, often the SEs differ with different brands of Tamox as it is the bulking agents which cause the majority of SEs in any drug and often not the  drug itself.

 

Tamoxifen as with any cancer drug is not prescribed lightly ,or unless it is thought it would be of benefit to cancer patients, its really not about big pharma making lots of money ,in fact Tamoxifen is now very cheap ,about £3.60 for a mths supply, Tamoxifen is however still considered to be the "Gold Standard" in er/pr+ BC and has no doubt saved many thousands of lives since its induction over 40 ago, so i would urge ladies who are struggling with Tamoxifen  to maybe have a word with their  personal medical teams to see what they can do with helping with any unbearable SEs ,it may just be that a change of brand makes all the difference.   its definately worth asking  to try a different brand before giving up on them completely, its also always a good idea when making decisions about any cancer treatments ,to ask  both what are the relitive risks and also the absolute risks  in taking/not taking any particular cancer drug ,as the 2 figures will differ.

 

Also just wanted to say ,PLEASE be very careful with what you read on the internet regarding cancer and its treatments, there is a lot of very misleading and wrong information out there surrounding this disease, in fact it has been shown that 90% of what we read on Dr Google regarding medical matters is either inaccurate ,out of date ,or just plain false, so my advice (for what its worth) is always try and stick to the reputable and reliable cancer organizations when researching for any cancer information .

Am really sorry to hear that some of you ladies are struggleing with unbearable  SEs from Tamox , but please  think very carefully before giving up on this drug , it may just save your life.

 

Linda x

 

 

 

Zeppa
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Yes, Tamoxifen is a fantastic drug. I don't know what is meant by 'highest earning of all time' - perhaps that was so when it was first put on the market, but it's really cheap now - and all new drugs tend to be very highly priced, but that doesn't mean that they're no good. I've heard it compared to Aspirin in its importance. I think the 30% is the 30% of the risk you already have - thus if your risk of dying within 5 years is 10%, Tamoxifen takes it down to 7%, that's the 3% referred to earlier. And no one knows if you personally need it. I do agree that we don't get enough support with the side effects, but they aren't equally bad for everyone.

Delenn
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

What should I do?

 

I have been offered, by my breast consultant, to start a 5-year course of Tamoxifen. I don't have breast cancer (yet), but because of my family history I'm classified as 'high-risk'. According to my consultant, new NICE recommendations is for high-risk women to do a 5-year Tamoxifen course. However I am slightly worried about its side effects, especially after reading all your comments on the forums.

 

Is there anyone out there who is taking Tamoxifen as a preventative measure?

rosebud50
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi

Was just reading about percentages and 4/8,8/8.

From what i understand they are different. I was tested for whether the tumour was hormone receptor. I was given 8/8. I understand this figure to be how strongly the tumour tested for response to these hormones.

The doctor takes this number, patient age, history, and other things. This goes into a calculator which pops out a percentage. This was explained to me as: line up 100 women like me and X number will need the treatment. The doctors do not know which of the 100 women will be in the group of X , so we all get given it. In my case for chemo, 2 to 3 % was given. I accepted it, to make sure i did everything for it not to come back. I do not know the tamoxifen benefit percentage, except it is significant for me. I got the impression 30% was mentioned, but may be wrong.

Tamoxifen was a real break through treatment in preventing BC coming back. In all our choices, this should be part of the considerations and should not be overlooked as we try and cope with the side effects.

Sika
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

I used the NHS Predict tool - 4.5% over 5 years, 9.8% after 10 years. ..
Sika
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Thanks for the replies. I wish I could find out my percentage ... If it was only 3% I'd stop it. But part of the problem is I couldn't ask my Onc even if I wanted to. I saw the Onc at the beginning of radiotherapy when he told me tamoxifen had no side effects, the Onc registrar spent 2 mind with me halfway through rads, then that's it for 2 years. But I'll call the BCC helpline.
sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Thanks for getting back to me CBreeze I will ask on my next onc appointment what it all means! xxx 

 

CBreeze
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi Sarah

 

I am no expert but did lots of research all the way through my treatment. You could google " Tamoxifen the hidden truth" and read various articles.

My Oncologist put it into % so a 2-3 % added risk of it coming back without Tamoxifen seems low. Im not sure what 4/8 means. May be you could ask your GP or Oncologist for the increased % if you stop taking it.

 

It will depend on what type of breast cancer you had, what treatment you had etc. I had a bi lateral mastectomy my lymph nodes were clear.

 

It would be nice if the medical profession was transparent so we could make informed decisions based on truth and not fear.

 

Sorry I can't be any clearer.... Good luck

 

 

 

 

sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

CBreeze - I don't understand about this % thing (sorry I'm not that sharp I blame it on brain fog lol) could you explain it a bit more is this the same as the 4/8 or 8/8 thing? The registrar said I was 4/8 so weak estrogen, she did mention something about being 27% chance of reocurrance without Tamoxifen brought downt to a 17% risk with it.

Sarahlousie xx

CBreeze
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hello everyone

 

I asked for % re cancer if I take or do not take Tamoxifen. Mine was a 3% difference and so I stopped taking it as I wasn't tolerating it well.

 

I am very concerned about this drug being pushed.It is one of the highest earning drugs of all time. We are all told that adverse reactions are rare.. We are testament to the fact that that is not true. Unfortunately the pharmaceutical industry is way too powerful and so often only has profit in mind over the truth. Dr's are encouraged to prescribe certain drugs etc etc etc...So  BEAWARE do as much research as you can and try to get your oncologist to level with you. We all have different cancers, triggers etc so I can not say for others.

 

Good luck

 

 

 

 

Curleychris
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

I was having awful sweats but started clonidine a couple of months ago I am also taking Evening primrose oil and starflower oil and am feeling much better. Tamoxifen is going to be in my life for possible 5 years depending on menopause status so I am trying to manage it as best I can. I find not sleeping the hardest thing to cope with. Hope these suggestions give some help to someone.
sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi all,

Sika, Rosebud - I completely get what your going through, its the same for me, my Onc used to  deny there were any side effects with Tamoxifen but now has changed his tune and agrees that most of my problems are related to the tamoxifen. Recently I had a blood test to make sure that the side effects I'm suffering weren't a symptom of somthing else the blood results proved that I'm still not through the menopause and all was ok with the bloods so it is the Tamoxifen that is causing all of my symptoms, finally they are agreeing with me. The problem is they wont agree that I should stop it, I absolutely hate it BUT they've told me I have too continue with it for the minimum of 5 years (2 years down and counting) the registrar I saw told me that I could take a weeks holiday on it but that in my opinion is not long enough I shall continue to take it but if It starts to get unbearable again then I'm going to allow myself a drug holiday of 2 months. As much as I hate taking it I do realise the benefits of taking the drug and in a way how lucky I am that I can take a hormonal that will prolong my life.

 

Hang on in there, the weather is changing this combined with the realisation that different brand types can directly affect the severity of the side effects ie: I'm ok on wockhardt and teva the hot flushes have for now calmed down and I'm not sweating so much.

 

Women do need support to stay on this drug, Gp's and Oncs. need to explain in more depth to us how it works, and why it is necessary also they need to address side effects caused especially when they are severe.  My Onc. explained for the first time what the  4/8 meant in relation to ER+ dx, she actually told me " basically it means that I am weakly oestrogen rich and therefore it would take slightly longer to come back and kill me  than if I was an 8/8" I sat there stunned!!!  There is no doubt in my mind that Tamoxifen does save lives, but it seems there is a price to pay with the horrible side effects. 

Jo_BCC
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi Sika

 

Please do give the helpline a ring and have a chat with them about what is happening, they're here to support you.  Lines open again on Monday morning at 9am through to 5pm (weekdays) and 10-2 on Saturdays.

 

I'm sure your fellow forum users will also be along soon to help out as this is a problem that is very much talked about on the forums.  You might also find it helpful to join our Live Chat session on Thursday evenings between 8.30pm and 9.30pm where you can talk in real time to other forum users about each other's experiences.  The session is also facilitated by a nurse and a moderator.  Here's the link for you to have a look at:  

http://www.breastcancercare.org.uk/community/chat

 

Take care,

Jo, Moderator

Guest user
Not applicable

Re: Support to stay on Tamoxifen - research shows women giving up ...

Sika

I really empathise with you. I am having acupuncture and have to say my flushes, which were leaving me wet all over, have reduced so much. I do not need to keep mopping myself down. These were offered to me free as a course of 6. They could help you. Any things worth a go, it's soul destroying I know.

Take care. L
Sika
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

I really want to stop taking it. My oncologist was adamant that Tamoxifen has no side-effects. I feel awful all the time and so worn out by the hot flushes. They're so regular and so intense. When they come on when I'm talking to people I don't know what to do - my face literally starts dripping and I have to wipe it dry. I'm going to be taking soon and so nervous about sweating ... About having to take tops on and off ... About the sick and prickly feeling that goes along with the flushes. My bedroom stinks of sweat. I can't wear make up. My body aches so much I don't know how I can stand up to teach ...

So I want to quit. There's no point talking to a doctor - I have no faith or Trust in them. Nobody had told me exactly how much tamoxifen will help me. I'm just scared to stop ... argh I hate it. I've had three flushes while writing this - off to go drench my hair and gave in cold water ...
Maire
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Thanks for the link. Very interesting-esp the bit about the 3 month holiday!

sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi roadrunner,

Thankyou for your interesting take on the great Tamoxifen debate, as with our cancers our reaction to these drugs vary so much, unfortunately I'm at the servere end of the spectrum with Tamoxifen suffering with nearly all the associated side effects I'm also on herceptin and have relatively few side effects on that drug which is a godsend as I'm going to be on it for the rest of my life. The radio 4 discussion talked about the possibility of us being able to take a 3 month drug holiday this is something I am seriously considering just to bring about some respite. Its good to hear about the with drug hot flushes and the natural hot flush, my onc told me a chemically induced menopause is always worse than going into it naturally. I have noticed that different brands of the drug react differently and have found the wockhardt one to be the best or the least side effects especially in the form of the hot flushes. 

sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Hi Marie,

Sorry I accidentally added a full stop at the end which is why the link wont work just take the full stop off and it will work xx

Maire
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Sorry-the link to the radio programme I meant.

Maire
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Couldn't get that link to work.

RoadRunner
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

This report made the front page of The Times.  On the one hand I was very pleased that someone was at last taking notice of the problem, on the other I was really cross that it has taken a study to conclude what breast cancer patients have been complaining of for years.  Tamoxifen has been around for a long time, I assume that patients have been having problems with it for just as long, so why has no-one taken any notice of us up till now?

 

My experience of struggling through five years of it, was that no-one wanted to know about the problems of side efects.  Oncologists just shrugged their shoulders.  I only got help from my GP because I found out here what other people were taking to help with the hot flushes, and went to my GP armed with a list of possibilities and asked him to prescribe one for me. 

 

Looking back over everything from dx in Feb 2007 to now, easily the worst part of the whole thing has been the hot flushes.  Chemo was horrible, but it was 8 cycles and then it was over.  Sleepless nights just went on and on.  It was difficult to function as a human being at times. 

 

The problem may be that hot flushes can range from mild to severe - I think the general public perception is of the mild variety.  I have now experienced both tamoxifen flushes and natural ones, as I have been 'lucky' enough to come out of my pseudo menopause after finishing tamoxifen, aged 50, have a couple of periods, then go into a natural menopause.  So I am still flushing merrily, and very fed up with it, but the hot flushes I am having now are nowhere near as bad as the tamoxifen induced ones.  Maybe the medical profession has never taken on board how debilitating and life affecting the severe flushes can be, and that the drug induced ones are far worse than natural ones?

sarahlousie
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Interesting 'Womens Hour' Radio 4  discussion about Tamoxifen today and the fact that women who are  suffering from side effects should be offered support, worth a listen on the iplayer  (its at the start of the programme) here's the link http://www.bbc.co.uk/programmes/b039d4b6.

Southcoastbeachgirl
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

I agree rosebud, SamLee & moorcow- the media reports are very one sided. Also their perception and therefore most of the public, is that we are all on Tamoxifen and that gives the worst s/es. Anyone on hormone suppressing drugs suffers s/es of one kind of another yet the AIs like Anostrazole etc don't get a mention. Therefore, for example in my case, when friends hear that I am not on Tamoxifen they assume that things are ok for me.
I've no doubt that for many of us the 5 year + hormone treatment is the worst bit of the whole thing and it would help if a broader view was promoted - and if named drugs are being used, that the range of options are specified.
We are all on this cancer merry-go-round together and Tamoxifen is not the only weapon!
Apologies for the rant, but I have had lots of problems with Anastrazole and would like a fair account promoted in the media.
Equally, it would help if GPs & Oncs were more honest and supportive of the major s/es many of us have to endure while on these drugs. Tears, anger, misery, pain & at times, almost meltdown!
I know it beats the alternative but golly it's not easy..
All the best girls xx
moorcow
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

Yes I read about this with some interest - the first six months of Tamox for me was really very difficult, but somewhere along the line my body decided to accomodate Tamox - I do remember saying at one point to my oncologist OH " if these side effects don't settle I will not be able to continue with this for 5 years"...

perhaps we could have a BCC survey , like the one I just filled in re body image, to see what specific effects made people give up....and whether there is research due to report that could  to help improve those effects. If none ongoing then perhaps BCC could start some?

The thing I find most irritating is that people not on Tamox describe the SEs as oh just hot flushes, and then move on ...how about every time you say the word hot flush you have to expend a huge ammount of energey over a period of 5 minutes, end up drenched in sweat and red faced, and then begin to wait for the next one, due any time soon!

 

 

SamLee
Member

Re: Support to stay on Tamoxifen - research shows women giving up ...

My experience has been that there is no support whatsoever.  I had chemo, surgery, radio and Herceptin and was then told "you will now be taking Tamoxifen".  That was it.

I managed to stick it on and off for about 18 months.  And yes, I am one of the many in the article yesterday who has stopped taking it. 

For me the side effects were worse than the chemo, and I had strong dose dense chemo.  It interfered with every part of my life including work and I weighed up the pros and cons and stopped taking it.

I haven't told my oncologist as she would give me grief over it I think. 

I am totally happy with my decision.

It seems to me that women who give up chemo part way through or decline chemo are viewed more sympathetically as it is perceived that the side effects from that are worse, whereas women who can't tolerate Tamoxifen are blasted from all angles.

As for the article mentioning cost to the NHS, again what about the cost involved in treating women who decline chemo and have a recurrence?  Again, nothing gets mentioned about that.

As usual reports are very one sided, I think.

 

rosebud50
Member

Support to stay on Tamoxifen - research shows women giving up ...

http://www.bbc.co.uk/news/health-23959070

 

Hi

 

I have just read yet another article on women giving up on Tamoxifen due to its side effects.  The research calls for supporting women better to stay on it.  ( This has also been discussed in the last year on Women's hour...)

 

What support have other women (and men) been given to stay on it?

 

So far I have had 2 GPs say that it is very benign drug and does not cause most patients any problems.  I was in tears, exhausted and not coping with menopause symptoms caused by tamoxifen.  I do not get to see an Oncologist again as I am a low risk patient.   There has been vague talk that there is significant benefit of me taking Tamoxifen but nothing specific.  If I gave up Tamoxifen tomorrow, noone would notice or try to encourage me to continue. 

 

What would I like to see?:

1) GP prescribing should have computers that highlight when repeat prescriptions are not activated

2) Better GP awarenes and communication with patients on why they should be taking it, the possible side effects and how to cope, the possible problems if stopping it.

 

What do others experience?