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the quality of life after tamoxifen

57 REPLIES 57
Humblepeace
Member

Re: the quality of life after tamoxifen

 
Minniemoocher
Member

Re: the quality of life after tamoxifen

Hi Ann I wandered onto the younger women forum and there's a relatively new thread called 'Tamoxifen and Starting a Family'..... might be helpful for you x

Butterfly318
Member

Re: the quality of life after tamoxifen

Dear Ann

 

To answer your original question.  If you find somebody exactly the same age as you, with exactly the same size tumour, exactly the same make up i.e. hormone receptive who has exactly the same treatment pathway you will not have the same outcome.   This is not an exact science, and Cancers are tricky with the ability to recur when we have done everything to prevent this,  exercise, followed anti cancer diets etc. I would be interested to know more about avoiding nuts, did your oncologist give you that information or have you researched it.  This is something i do eat as part of a healthy diet.   

 

I really struggled with the lack of answers and clarity when i was diagnosed, i wanted answers, wanted to know how long i would live.  Sadly i still can't work that out 3.1/2 years on.

 

In one of you posts you identify that you are aware eostrogen feeding the cancer cells may lead to recurrance.  So Tamoxifen blocking them getting to the breast tissue makes sense.

 

I do understand your reasons for wanting to know and to hear from people in similar situations and hope some people on the younger ladies forum will be able to provide some answers.  I was 50 when diagnosed, nearly 54 now and my Son is grown up but i am doing everything i can to stay alive for many more years.

 

I took Tamoxifen for 2 years and now on Letrazole for 8 further years, hot sweats, terrific pain in joints but this does improve with swimming, helps me move easier during the day.  I was ER8 PR8 and 6.5 cm tumour so will not be stopping the meds any time soon.

 

Take Care and good luck with your treatment.  Butterfly. x

 

    

AnnChizh
Member

Re: the quality of life after tamoxifen

AngelSam
Please read the thread from the beginning
AnnChizh
Member

Re: the quality of life after tamoxifen

Sorry,have no time for arguments. As I mention before I was more then clear in the beginning if the theme.
JCJ
Member

Re: the quality of life after tamoxifen

Read your own post, Ann - it does contain the word "threats"!

 

If you don't want people to state their opinions, don't ask for them on a public forum!

 

In my experience, everyone here is trying to support one another and have free and open discussions, without any wish to censure, offend or upset. Sorry if we have "destroyed" "YOUR" thread! 

 

I sincerely hope you find the answers you are looking for, get past this horrible disease, and can move on with your life, however you want to live it. x

 

 

Charys
Community Champion

Re: the quality of life after tamoxifen

Ok Ann, I give up........I was  just trying to help and say that threads tend to meander a bit here. Nobody was trying to 'destroy' anything, we aren't in the business of that here. ALl the best, and hope you find the answers you are looking for. 

AnnChizh
Member

Re: the quality of life after tamoxifen

Charys,
First of all "threats" was not my world. Please read messages.
So I can not say anything in the theme which I created myself and you can say to me that I am unfair, and should create another theme???? while you even don't want to see why the topic was created and from whom world's as "threat" come from. That's crazy. I have to create another Topic, because now these theme is all not about it has to be at all. But I am afraid that even if to put more clear all the details for topic, there will be always people who will put their writing and will destroy the subject
Charys
Community Champion

Re: the quality of life after tamoxifen

Threats? Senseless chat? Oh Ann, you are being very unfair. 

 

We aren't just here for 'research' we are here to support each other in whatever way that takes, oldies and newly diagnosed alike. Threads tend to divert on this forum as different people appear with new thoughts and perspectives. It is open access here, you can't pick and choose who reads and who replies, and what they reply about. 

 

Heres a suggestion that might work.......Why not put a thread in the younger women forum entitled ' 35-40 years old, have the same diagnosis as me and want to have children, can you help?'. You called it 'quality of life after tamoxifen', and to be frank that is a topic that is close to the hearts of a huge number of women here as we are also fighting our own battles and involved in hormone therapy. 

 

Good luck to you, and no ill will intended. 

 

CHarys 

AnnChizh
Member

Re: the quality of life after tamoxifen

I just wish I created this Theme not for humour, threats or senseless chat. As I put in the first message of this theme I am looking for the women 35-40 who have simular diagnosis and want to continue their life healthy and even have children maybe. That's mean if someone think that diet is rubbish and wine is good to enjoy life, that's fine, but it's another idea. Maybe for the theme "wine,humour and no diet after cancer"?
Charys
Community Champion

Re: the quality of life after tamoxifen

Thanks Minne and thanks Wembo xxxxx

 

Ann, sorry when you come back the thread has been a bit over run. Sending you my very best wishes. X

 

Wendyy
Volunteer

Re: the quality of life after tamoxifen

Charys

Keep your sense of humour Im certain cancer cells can't thrive on humour. xx
Minniemoocher
Member

Re: the quality of life after tamoxifen

I would send you a hug but can't  make it work !! (((Xx)))

Charys
Community Champion

Re: the quality of life after tamoxifen

Ok I'm back......I've sat on the naughty step for a short while.......it was just imagining my oncologists' face being asked about chocolate that made me find things funny. She's got an abrupt manner and is seriously lacking humour as it is.....

 

I'm sorry to have sparked off a debate on this thread, I misjudged how seriously Ann was taking the food related research. I want Ann to feel welcome to post, support others and gain support. I do agree with others though, there is a different thing said each and every week about foods and their relationship to cancer. A few months ago I saw evidence about walnuts and the things they could fight off, in another part of Internet land walnuts are carcinogenic. I only eat fish, and haven't eaten any other meats for 20 years, I don't smoke, am teetotal, right slap bang in the middle of my BMI and am active. Yet, still, I find myself here :0( 

 

Anyway, I'll try not to stoke any more fires.....for the time being. Love to ALL xx

Minniemoocher
Member

Re: the quality of life after tamoxifen

Absolutely JCJ & Jobey...well said

JCJ
Member

Re: the quality of life after tamoxifen

Well said Jobey!

I am sick of articles in the press and online linking cancer to foodstuffs - either causes or cures. Most, if not all, have no scientific basis, with genuine independent research results, behind them.

 

The very fact that so many Vegas, vegetarians and other very diet conscious people pop up on these threads proves to me BC has little to do with diet and we should all just be a little less stressed (which IS proven to be detrimental to health!) especially about what we eat. Get your 5 a day. Avoid excess fat or sugar (but don't avoid altogether as they are necessary in a balanced diet!) eat sensible sized portions of a variety of foods with a few treats now and then but, above all enjoy your food and what's left of your life - none of us know how long that will be!!

Jobey68
Member

Re: the quality of life after tamoxifen

I'm glad to have helped ease your conscience lol! I've never ever read or been told not to eat nuts and I certainly do, love a bowl of muesli! Xx 

Happyboobs2
Member

Re: the quality of life after tamoxifen

Thank you Jobey, you have made me feel better about my nuts!😄

xxxx

Jobey68
Member

Re: the quality of life after tamoxifen

Ann no one here would criticise you, I'm sorry you have taken some comments that were clearly meant in a light hearted way to heart, a bit of humour on the forum is a very good release from all the stress we are under, I don't actually believe there is any hard evidence regards diet and breast cancer and I for one eat chocolate and drink wine, life is for enjoying and all things in moderation, I won't take responsibility for having BC, it's not my fault, all the best to you Xx 

Anita
Member

Re: the quality of life after tamoxifen

Ah thank you I shall look out for those. X

Minniemoocher
Member

Re: the quality of life after tamoxifen

Ha i'm the same, v sweet tooth! I don't miss wine or crisps but need something sweet. There's a Pukka licorice & mint tea which can stem the 3 o'clock Twix pangs quite well and I also keep a stash of Nakd chocolate bites in my drawer, not nice enough to pig out on but a couple do the trick when I have a craving! Xx

Anita
Member

Re: the quality of life after tamoxifen

Thanks Minniem you're probably right I've heard so many differing views. I know sugar feeds cancer but I've got a sweet tooth & if I cut out sugar altogether I'd be miserable so I've just decided to try & be sensible so I can enjoy life, too. X

Minniemoocher
Member

Re: the quality of life after tamoxifen

Hi Anita. It seems that there is information for and against almost all foods if you google so personally i've just decided to listen to the breast care nurses and Moving Forward course and just concentrate on eating good plain balanced food, nothing forbidden but moderation in all things and try not to get too obsessed or faddy about it. My philosophy is to try to minimise future problems while thoroughly enjoying the life i've been given at the same time. Just my humble opinion... best wishes everyone

Happyboobs2
Member

Re: the quality of life after tamoxifen

Hi All!

I am now panicking, I am on Letrozole as my BC was hormone dependant and no one has said I shouldn't eat nuts, i.e peanuts, cashews etc, also I love mixed fruit and nut muesli.

Help!

Is this really the case? I used to use soya milk in place of dairy milk but stopped that, do I have to cut out nuts as well?

xxxx

 

Anita
Member

Re: the quality of life after tamoxifen

Sorry for butting in on someone else's thread but noticed two things that interested me: Wendy I've just had my first Zoladex injection & will start letrozole after second & was just wondering what side effects you'd had? I've felt a bit achy & bloated like I usually feel before my period starts - is that normal? And Ann I've started eating nuts as someone told me they were good for me but my BC is hormone positive & you say they are bad. Just wondering where you found out what foods are good & bad as would be interested to know. Anita x

Minniemoocher
Member

Re: the quality of life after tamoxifen

Hi Charys/ Ann, apologies I didn't mean to start a fight with my info!

 

I understand how important this is to you Ann, we're all in the same boat,  hopefully someone will soon be along with similar experiences to you that can give you more specific advice.  No-one is being offensive by being light hearted about our situations. It doesn't mean we don't care.  What's got me through the last 6 months of hideousness has been laughing in the face of adversity and finding the funny wherever I can!

Charys
Community Champion

Re: the quality of life after tamoxifen

Oh gosh.....I was only being light hearted. It was meant to be funny? Sorry you have taken offense about the chocolate thing, I was nt criticising you at all just sharing my humour I guess. I ll go elsewhere and leave the thread then. 

AnnChizh
Member

Re: the quality of life after tamoxifen

Charys,
Also if you read a conversation, you can see its about Diet not about just a chocolate. Anyway,I created this Theme "life quality after taking Tamoxifen"to collect and all experience for me and others who want to survive and be healthy,. but not to be criticised in the way you like.
AnnChizh
Member

Re: the quality of life after tamoxifen

Hi Charts
I am sorry a chocolate thing make you laugh so much. First of all it was a reply to the previous message and sort of advice. Another thing is that my weight is fine and I only don't want to be bigger (for health as well). And,the main thing is that a diet is very important while you have hormondepended cancer, as many products contains or make more estrogen( which could make your cancer cells multiply).
Cheers
Charys
Community Champion

Re: the quality of life after tamoxifen

Thanks everso for your replies ladies, it has certainly made me feel much better ........I have to admit I've not started them yet.....unfortunately something else rather serious going on in the family that to up my time yesterday and will do for a few more days. It is my intention to go for it after that, when my mind can be more 'positive' and 'stable' . The idea of a DVT travelling is what freaks me out, thinking lungs and heart...I find that so scary, but as you say...so is BC! 

Ann, I have to admit I did laugh about the chocolate thing you mentioned ( not to belittle the query you have about trying to lose weight).....if I was to ask my oncologist about the sort of chocolate that was best for me I can't imagine the type of answer I would get. I suspect her mouth might drop open first and then she might consider it a joke lolol I might try it and see what happens 😆 Dark chocolate is of course meant to be better for you for all sorts of health reasons saying that.

 

Charys x

AnnChizh
Member

Re: the quality of life after tamoxifen

Hi Minniemuooher,
Thanks for repIy.
Sounds like sort of no diet.."loads of "(?)..as I know you shouldn't drink more then 1,5 liters. And nuts are not good if it's hormone depended type of cancer..as for a chocolate it's fine if it s black one. That's just what I know...
however,check this with your onc.
Xx
Minniemoocher
Member

Re: the quality of life after tamoxifen

Hi Anna. I can only let you know about my own experience. I put on a stone post op, have lost 7lb but seem to be stuck now. The change in shape is more annoying to me than the weight itself. I have been overweight before but never had as much fat around my middle as now. I was v fit pre-op and just hope that as my fitness comes back the belly will go!

 

 I'm sure I had too many treats while I was recuperating but generally my diet  is good, loads of fruit and veg, nuts, chicken, hardly any red meat, I drink green tea,  2 litres of water a day & a couple of cups of normal tea. I usually have chocolate most days but was able to get away with it when I was fitter!  I'm trying to cut this out at the moment but it's not as easy as I thought!

AnnChizh
Member

Re: the quality of life after tamoxifen

Dear Minniemoocher,
I am just wondering is it still possible to get fat while taking Tamoxifen if you eat just vegetable,fish,turkey,fruits,porridge,honey and drink only water and green tea? Nothing fried as well! Have you stick to any diet? What was your food ration when you get fat after Tamoxifen?
Thanks a lot,
Anna
Minniemoocher
Member

Re: the quality of life after tamoxifen

Hi Charys,  hope my bit of info will help you somehow. I've been taking tamoxifen for 8 weeks after a mastectomy. During the first month I had itchy skin, very achy joints, lethargy, really bad night sweats and day flushes. I was taking it at bedtime but now take it with breakfast, this minimised the night sweats to almost nothing. After 8 weeks pretty much all the side effects have subsided, i'm a bit tired and achy but that's partly due to being 17 weeks post op, not just the tamoxifen..and it's all perfectly manageable.

 

I did a 7 hour flight a few weeks ago and was fine. I did have the sexy surgical socks on mind you!

 

 My only real problem is struggling to lose the weight I put on post op. My energy is coming back, i do 4 gym classes a week and feel fitter even though i'm getting fatter.....especially around the middle!

I was lucky not to need chemo or rads but in my mind that means i'm putting a lot of pressure on tamoxifen to protect me for the next 10 years!

 

Bibi44
Member

Re: the quality of life after tamoxifen

Hi Charys my sister had a PE (DVT travelled to the lungs) & my mother a DVT. Onc asked the circs. Sister was on bed rest in hospital for 2 weeks & mother had just had an op. Onc said as long as there is a reason for their clots, your risk is no higher than average. You say he's immobile, so that's why it happened.

I was told to discontinue tamox for 2 weeks before any long haul flight 10 hours +, but not for Dubai (6-7 hours) or short haul & to get up a lot & do the leg exercises they recommend on board. Good luck for rads. BBxx
Wendyy
Volunteer

Re: the quality of life after tamoxifen

Hi Charys

 

As someone who's had to stop taking Tamoxifen because of DVT I thought you might be interested in my experience. I'd taken it for 18months and was aware of all the side effects. I had hot flushes which although not pleasant I dealt with by wearing natural fibres in layers which were easily removed when necessary. I also have a remote control dyson fan in my lounge which I switch on and off accordingly. You'll find your own way of dealing with the flushes I'm sure. 

 

As as for the DVT. The initial diagnosis frightened me. But a couple of months on its causing me few problems. In fact I'm heading off on holiday on a long haul flight with confidence. What I would say is be alert and get to know your body.  I had quite a lot of cramp in my legs and feet which although painful went away quite quickly. The pain from the DVT didn't go away so I contacted my GP and within 24 hours had a scan and was on blood thinners.

 

Im now taking Letrozole and Zoladex infusions and learning all about their side effects. 

 

Thats my experience and with hind sight would still take the Tamoxifen as I'm not sure how I'd deal with recurrence if I'd decided against it. 

 

Good luck with your decision. 

 

Wendy x

 

 

Charys
Community Champion

Re: the quality of life after tamoxifen

Hi all ,

 

i am bumping this thread back up.....as have the tamoxifen sat here on my kitchen counter having just picked it up. I am literally terrified of taking it, I do have some background 'issues' with phobias about medications but the SE look so damn terrifying I am besides myself.

 

I have read probably too much on here about people who get DVTs and as my Dad has had one (albeit he is a wheelchair user with no movement!) I have started worrying about the whole DVT thing. I picked this thread up particularly because Seabreeze talked below about it having taken her a 'few months to bite the bullet', and I feel like I might be in turmoil myself that will make me delay. I'm not sure what to do....go back to the GP and talk through all my concerns as she is the one who has issued it? I've got RT starting on 1 st and am trying to get my head around that too, but it doesn't feel as frightening as this medication. I know I should feel grateful at having a treatment, and a removed cancer type which is receptive, but I can't get my head around that fact that I need to take something that could make me I'll in other ways? 

 

What at a mess I'm getting myself into.😕

 

Imknow this has been asked here before, but surely the majority of people are OK taking this drug?

 

Charys x

 

Bondgirl
Member

Re: the quality of life after tamoxifen

Hi Seabreeze, yes I am going to bring the other 10mg in tonight, my GPs suggested this today as it might be easier on the body. I just want to get settled with it.  My prescription today was Activis not Teva, told her I was concerned about a different brand but she said try it as it may be better than Teva for me. 

 

Anyone on Activis? How are you on it?

Michelle

Seabreeze
Member

Re: the quality of life after tamoxifen

Hi Annchizh,

 

You might find you don't have any stomach problems, I haven't experienced any, always take 20mg straight after muesili at breakfast. 

Quite a few women on tamo do find they get hot flushes....my oncologist suggested I try sage which worked wonders for me. 

Bond girl - perhaps you could try reintroducing the other 10mg after awhile? May just have been your bodies initial response? Appreciate you may have tried everything.

 

Seabreeze

AnnChizh
Member

Re: the quality of life after tamoxifen

Thank you so much Bondgirl!
Bondgirl
Member

Re: the quality of life after tamoxifen

Ooooppps my last post should have said 20mg not 30mg

Bondgirl
Member

Re: the quality of life after tamoxifen

Hi AnnChizh, you mentioned tomSeabreeze about stomach problems. I was really nauseous and a lady on here suggested to me to take the tamoxifen with food.  I did this and the nausea disappeared immediately.  I also am struggling with the 20mg and have broken it in half and at the minute am taking just 10mg in the morning and my side effects have reduced a lot.  I am going to try to take the other half at night time to see if I can manage the 30mg a day.  My oncologist has said it is ok for me to do 10mg a day as something is better than nothing.  Hope this helps

AnnChizh
Member

Re: the quality of life after tamoxifen

Thank you so much indeed, Seabreeze! That s really helpful. Yes I am thinking about 2 years..the risk of reoccurance probably have a connection with genetic test results as well..
The thing I am still wondering may it be possible to decide 20 MG for 10 morning and 10 eve, to avoid some stomach side effects.
Seabreeze
Member

Re: the quality of life after tamoxifen

Hi AnnChizh,

 

I was in my early 40's when diagnosed so asked quite a lot of q's before starting taking Tamoxifen. 

Picking up on a few queries from your posts:

 

My oncologist informed me that the period of highest risk of reoccurance is the first 2 years. Hence some women who wish to try to get pregnant take Tamoxifen for 2 years before stopping. 

The risk with the above is that hormonal changes, plus not being on tamoxifen mean you are not so protected against a reoccurance during the first 5 or 10 years after diagnosis.

 

Re benefits of tamoxifen - you can ask you oncologist to provide you with the survival statistics for a woman of your age, with your type and size of cancer via adjuvant online. Another system Predict online is very similar (the later is on the Internet and open to all). These sites show survival 5 years and 10 years after treatment and how survival is increased by taking hormone therapy etc.

Clearly the risk of reoccurance is higher (many women being treated second time round and surviving). My onc said Tamoxifen reduced the risk of reoccurrence by about a third?

 

re tamo causing other types of cancer - it can cause thickening of the endometrium and does slightly increase the risk of cancer of the womb. However the risk of developing this type of cancer while on Tamoxifen is far lower than the risk of a reoccurrence of breast cancer if you don't take Tamoxifen. Hence taking the Tamo is the best option re overall protection against reoccurance if your bc is hormone positive.

 

i confess it took me about 4 months before I decided to bite the bullet and take the Tamoxifen off the shelf!

 

hope that helps re your queries. 

 

seabreeze x

susan farrell
Member

Re: the quality of life after tamoxifen

sorry i did not realise that i will keep hoping you do find someone that can help you hugs hugs
AnnChizh
Member

Re: the quality of life after tamoxifen

...also,tamoxifen might produce another type of cancer ( one of side effects). So it might be too late to say "if it doesn't work try something different".
AnnChizh
Member

Re: the quality of life after tamoxifen

Dear Susan,
I want to have children. And that's why I am searching women if my age with the same diagnosis. Also,in my case there is no other option, but tamoxifen only.
susan farrell
Member

Re: the quality of life after tamoxifen

sorry i forgot to say i was 40 at the time i am now 50
susan farrell
Member

Re: the quality of life after tamoxifen

hi anna

I had breast cancer 10years ago and I was on tamoxifen for 5 years and they worked well.best of luck. and the one thing. I will say  to remember we are all different and treatment work on me and may not work on others as well. I always took on board what my team would say don't be afraid to ask if it does not suit can you try something different

regards

susan

AnnChizh
Member

Re: the quality of life after tamoxifen

Thank you very much Bibi44,
That's a good advice to check that groups.
Cheers,
Anna