Can I first of all thank Lola for recommending this thread to me, I have found it so helpful.
My main problem with taking Tamoxifan is the severe joint and muscle pains I am getting. I mentioned it last week to the nurse at the radiotherapy clinic, she scared the life out of me by suggesting I may need a bone scan, so decided to visit my doctor who said it can be a side effect of Tamoxifan, If that is the case I am hoping that this will gradually wear off, because i would rather have a decent quality of a short life then a longer life in pain.
I can't talk about chemo, but weight gain is certainly listed on the possible side effects of Tamoxifen. However, I have lost even more weight since I started it (I had already lost about 3-4 stone since this whole thing started last June). I look awful!
I guess people react in different ways. I was looking forward to no periods for a few months, too! sigh ....
I think for me, the main thing going on right now is that I just have no appetite. I definitely can't eat anything sweet. I can manage toast and fruit (and Thai curry!) but that's about it. As a normally big eater this has come as a surprise ...
But just to say, you may put on weight on Tamoxifen, but equally you may not.
Many thanks - tonight it is then !
someone mentioned weight gain from chemo - can I ask how much and have people been succusssful in getting it off again ( in combination with the tamoxifen)? I've gained 8lb, which doesn't seem like much - but I can't do my uniform trousers up and get really fed up when I try and put anything other than my baggy jeans on. I've never had much success loosing weight from dieting and am worried that this pill will make it harder. Gonna start walking (usually do a few miles around the countryside here) and once I feel stronger will start jogging again - but I hate it and will use any excuse not to go (like sitting here typing this!!) Any suggestions/hints?? Been told grapefruit is good for water retention - any other 'old wife's tales' out there that work ?? !!
me too! Hi,
I take mine last thing at night too, and either drink milk or eat yogurt. Taking it at night means the worst of the nausea and sweats are over with - I just try VERY hard not to wake up in the night! - and actually, the sweats during the day have now stopped.
I find it very hard to eat. But when I do, it certainly makes me feel better. Little and often ....
It's not all doom and gloom tho - I found a forum online where a whole pile of women were saying they had NO side effects whatsoever, and felt fine. You might get lucky!
For Cath Hi Cath
I know how you must be feeling, starting on the tamoxifen was daunting for me, I looked at the tablets in the cupboard for 3 weeks before taking!!!. We are all different in the way we react to the side effetcs. I take mine last thing at night with a small amount of milk, I read somewhere that the milk helps!!! I get my hot flushes through the night, my theory is its easier to throw the duvet off than stripping off your clothes if you have them during the day!! and believe me it more beneficial for the public if I keep them on!
Hope your side effects are'nt to bad.
very interesting I am now on packet 6, 3rd prescription, and every time I get a new prescription I have a different brand.
I thought I was getting off lightly just the odd flush in the evening and was starting to loose my chemo weight, but this third lot have made me put on weight (especially on my hips and tummy) very short tempered, crap sleeps and itchy scalp.
I have a repeat prescription but will shop around and try the Nolvadex-D and if I can't get any luck with the chemists will get an appt with my GP.
p.s. Cath, I always take mine before bed.
and currently on arrow generics tamoxifen.
Nolvadex-D am/pm? Been reading your posts with great interest - I start tamoxifen tomorrow (argh) and after reading your messages first I got really scared and then I asked for Nolvadex-D instead of the APS brand I was given so I can start on the right foot - which I'm please to say my doctor gave me with no real problems.
My question is - morning or evening?? When is the best time time of day to take to damn thing!
tamoxifen, different brands I have a 3 month prescription for tamoxifen, which i have been on for over 12 months. When i went to pick up my presciption this time i had been given 2 months worth of the brand i normally have ( just called tamoxifen!) and 1 month of Nolvadex. Now i am worried about switching brands!
I have been having ear, nose and throat problems and headaches, but didn't associate it with tamoxifen.
Also i have been given Megace for hot flushes, anyone had any experience of these, apparently they were used to treat BC before tamoxifen. They seen to be working, but worried about long term side effects.
Message for Liverbird - Ruth Hi Ruth
I'm going to give it a go - and if I do see an improvement in two months time I'll ask my GP if I can try Novadex.
My periods stopped but then I am on the coil which reduces them anyway.
GP wanted to put me on anti-depressants because I am very low at the moment but I thought I would see how I feel after the two month break.
Psychologically feeling better already but physically - I suppose I have to give it time.
Wow, loads of interesting thoughts here ....
I still haven't made it to the GP to ask to change brands, maybe this week will be the week!
I have a strange question tho. Yesterday, I was about the worst I've been so far. I would find it hard to express how much I hate Tamoxifen. I was in bed most of the day and just felt utterly, utterly wretched.
Then (don't laugh!) I had a Thai green curry! Um, twice! It was odd to have any appetite at all, but the oddest thing is, I've been out of bed today (mostly) and actually feeling almost normal!
I suppose it's daft to ask if anyone else has had this ... reckon if I live on this stuff for the duration, my side effects will ease?!
thanks for the info I’ve read these posts with great interest. I was on Arimidex however I so much joint pain and mental fogginess that I came off it. My oncologist wanted me to take Tamoxifen but admitted that I would still have a degree of mental fussiness. So I didn’t try it.
I was thinking about changing my mind and giving it a go however having read these posts I am positive that I have made to right decision for me.
Living well is more important than living a long time for me Ã¢â‚¬“ I expect that’s some thing to with my age. I would recommend that anyone thinking of giving up medication speaks to their doctor first.
try a different pharmacist! Another way of getting the brand you want (and I believe it DOES make a difference to side effects) is to shop around a different chemists when you're due to pick up your prescription.
Most pharmacists will only supply a particular brand of tamoxifen, regardless of what your prescription says. Hunt around to you find the brand that suits you.
Locally we can only get Norvadex at Boots.
Nolvadex D I've only been on Nolvadex for 3 days and already I feel so much better than when taking the generic brand, I keep thinking it must be phsychological (? spelling) The naseau and excess saliva has gone, joint pains appear to be better, still have dry mouth and hot flushes at night but this I can cope with. If you are struggling like me, please try and get your GP to change you to the original tamoxifen, it seems to be working for me. Nothing ventured nothing gained!!!
PS I hope I have not tempted fate by posting this message!
You lucky thing, i think i would be a bit frightened to come off it but will mention it to the onc.
I would actually be interested to se if my periods returned i havent had one for 12 months now.
Let us know how you are feeling.
Message for Suzieshere Hi there
Well I went along for my yearly check up with my breast surgeon and spent a good 20 mins explaining how I felt, etc. After a lot of discussion about the treatment I had received, he actually suggested I come off Tamoxifen for a couple of months and see how I am. He did not see this as a problem - as far as he was concerned I had received the most important treatment.
I went to see my GP later that afternoon and he also suggested I have a break from Tamoxifen - so that's what I am doing.
I'll let you know in 2 months time how I feel!
Blimey this is seeming like a mine field of different brands of tamoxifen one bit of me wants to sit down and cry and scream.
Its all horrible isnt it. I was thinking the other day of my 'normal' life before Dx i can dream cant I?
tamoxifen/hot flushes i was prescribed Nolvadex by my oncologist and suffered so badly from night sweats and hot flushes. i was having flushes every few minutes and it wasn't until the oncologist saw me one day during my radiotherapy (I was having a flush) that he prescribed Megace. This worked wonders and now I have no flushes at all and no night sweats. hope this info. helps
hi, had the proper one from the hospital when i saw onc, from the doc i had APS and now seem to have SANDOZ, don't want to tempt fate but flushes not to bad although this could be due to the cold spell we are having. slightly big belly but can't win them all.
Update Dear All
Thanks for all your replies and advice, I have today got another prescription for Novaldex D - so all being well the sickness will dissapear, I am hoping that the 7 months pregnant look will pass me by!!!
Different brands Just thought I would add my two penny worth.
I have had miserable side effects from tamoxifen, extreme tiredness, nausea, vomiting, itchy skin - I scratch it raw, funny dizzy spells, headaches, heavier than normal periods, can't drink alcohol - you name it, I seem to have had it.
Started off with APS tamoxifen which was horrible - nausea was awful. My GP switched me to Nolvadex and I felt much much better -problem was that my stomach swelled and swelled during the day and by the evening I couldn't get into any clothes and looked 7 months pregnant - no exaggeration. This really got me down and I went back on the APS brand - nausea came back with avengence but the swollen stomach problem disappeared. Apparently this reaction is extremely rare - trust me!
I am now on a liquid version, Soltamox, which tastes disgusting (unless you love liquorice and aniseed) but seems to be the best of a bad bunch. The added ingredients are minimal - just flavouring and gylcerol and sweetener. I think some of my problems therefore must be attributed to the filler stuff they put in.
I would highly recommend to keep switching brands until you find one that you can tolerate. I can't say I feel great but I can live with the side effects now - which was more than I felt I could do on APS.
I read somewhere (might have been elsewhere on this forum about prescription costs?) that some Health Authorities have requested (!) that GPs only prescribe for 2 months at a time to reduce drug wastage.
Seems a reasonable and sensible idea BUT not when you are scheduled to take Tamoxifen (or whatever) for the next 2 yrs or 5 yrs.
If your GP is only prescribing 1 or even 2 mths at a time maybe you could ask if this is why, especuially if you are under 60 and still paying prescription charges.
Mine is prescribing 2 mths but I am still in the first year of treatment and on 3 mth hospital appts. Also I have just been through a family bereavement, so think she wants to keep an eye on me.
Glad i have found this as i was beginning to think that i had something more serious going on with some of the side affects but now i think its probably the tamoxifen.
blimey someone said no hot flushes whats the secret? I must have about 10 a day at least and 2 sweats at night horrid.
I am going to ask my GP for the nolvadex D but he is mean probably wont prescribe it if its dear.
I get 2 months supply but a friend has just been given 6 months supply so i am going to ask if they can increase mine why do some GP's give monthly prescriptions and some six monthly awful really.
I can't remember what the oncologist prescribed at he first consultation but I was on the generic Tamoxifen for several prescriptions after that. This is because GPs have a directive to use generic drugs where available.
However I had read enough posts on here which suggested that Nolvadex D (the original) showed less side effects, from marginal to substantial in degree. The finer packing seems to be the difference.
My GP prescribed Tamoxifen with a recommendation that the pharmacist dispense Nolvadex D; however she said they (GPs) can't guarantee that the pharmacist will give you the named drug. I did see a marginal improvement but my hormone sweats are so bad that this was enough to continue with Nolvadex D.
My local pharmacies do not usually stock it, so I have to give them 24-48 hrs notice. If your GP agrees to name Nolvadex D, don't let the pharmacist put you off with the generic form, say you will wait for them to order it for you or take it elsewhere.
Another thing, my GP was prescribing for 56 days and they are packed in 30s. After I told this to my GP she now prescribes 60 days.
Hope this helps.
Now THAT sounds like me! I'm 42 ...
Nausea - Yep!
Extreme tiredness - Yep!
Headaches - Yep!
Bad tempered - Dunno - am always like that!
Very low on verge of depression -Yep! Someone smiled at me in M&S and I broke down in hysterical tears ... *ahem*
Soreness and discomfort down below - Nope, not yet
Dry mouth during the night - Nope
Excess saliva during the day (ie dribble)! - Nope
Sore ears and nose (internally) - Nope
Last period 18 December 2006 - Ah, I have the opposite problem ... welcome to the Nile Delta ...
But hey.....guess what.......no hot flushes!!!!!!!!
Well you ain't lived! I could whoosh for the Olympics ...
OK, look forward to hearing how you get on with the GP. Good luck!
Message for Suzie Hi
I've been on Tamoxifen for 6 months. Side effects (I think most of them come from Tamoxifen) include:
Very low on verge of depression
Soreness and discomfort down below
Dry mouth during the night
Excess saliva during the day (ie dribble)!
Sore ears and nose (internally)
Last period 18 December 2006
But hey.....guess what.......no hot flushes!!!!!!!!
I'm 39 by the way!
I'll let you know how I get on after visit to GP on Thursday (you'll have to remind me - another side effect is fuzzy brain!!). I forget what someone has told me only half an hour beforehand and I was never ever like that before. lol.
How long have you been on it, Sandra? I just checked the diary, and it's been nearly 4 weeks. I was sick within 20 minutes of the first tablet, and haven't been back on my feet since!
(It might help if hubby would stop trying to feed me ... bleah!)
Well at least my hot flushes are impressive. I can do 0-95 in two seconds .... lol
OK. Race ya to the Novaldex!
Tamoxifen I feel exactly the same Susie. I've read some of the other postings and decided to go see my GP this week and ask for Novadex!
All being well all the nasty side effects will fade away.........
I hope you don't mind if I ask a question.
I'm on the generic stuff too, and I feel like I've been hit by the Tamoxifen Truck of Doom. I can barely get out of bed, I'm sick to my stomach, I can't eat and I can't stop crying.
Is the decision as to brand, something the consultant or doctor makes? Or does the pharmacist make the decision when you take the prescription in?
I think, in the light of your comments, I might try switching.
Many thanks, and sorry to intrude,
Nolvadex D Hi Clare
I totally agree with Karenanne. I have been on Nolvadex D for just over 2 years and now do not have many side effects. I was on Tamoxifen and had lots of problems with it - it did not matter if I used the same pharmacy each time as they got in different brands. My breast care nurse said to try Nolvadex and I noticed an improvement very quickly. There should not be a problem with your GP as it does not cost him anything to prescribe this. I still get hot flushes and some joint ache but I think this is due the being pushed throught the menopause early....yet another side effect! It is difficult sometimes to know what is causing what symptom but I did loose the nausea, dry mouth etc very quickly.
I would go as soon as possible to your GP so you can see if you are any better. If not then I suggest you go back to your Oncologist and see what he/she says.
Best wishes and good luck.
Nolvadex D Hi, Have just been reading your postings, over tamoxifen.
When I started in Nov. 2005, I was originally on the generic tamoxifen, and had the same problem of never getting the same brand everytime I ordered it. I also had a lot of joint pain with it. After talking to my breast care nurse about it she put me on Nolvadex D which is still tamoxifen but in the purer form, it has less junk in it's make up. Each company that makes tamoxifen puts it own bulking out agents in it and it can cause unpleasant side affects. Nolvadex D is made by the company who invented it so they use less bulking agents. You always get the same brand cos they are the only firm that make it. The reason why we are put on the generic form first is because it is cheaper to make. Some people have no side affects, But some do. Try asking your gp. to change your prescription to Nolvadex D. If he quibbles get your breast care nurse or oncologist to fax him. Most do it with out to much hassle.
Hope this helps. By the way my joint pain eased within a fortnight of changing brands.
Hi Clare. I use the same chemist everytime I get a prescription and ask for the same brand. In my case CP.pharmacuticals(spelling) if they don't have them in stock they are ordered in. I do get side effects but at least I know which ones to expect.
I used to feel quite nauseaus for the first couple of months but it eased over time.
I was advised to take at night before going to bed maybe that would be worth trying if you take them of a morning or vice versa.
I suffer from a dry mouth morning and night my dentist told me it was because chemo. damages the salivary glands so more to do with that than Tamoxifen but not sure I'm convinced.
Try and stick with it Clare the chances are the symptoms will ease over the next few weeks.
Tamoxifen Hi Clare
I have been on Tamoxifen since August 2006. Unfortunately my doc will only prescribe 1 months supply at a time but each time I get the prescription I notice it comes from a different supplier. It still says Tamoxifen on the packet but the distributor on the pack is not always the same. How do you know if it is APS?
I have fortunately not suffered with hot sweats but I do have terrible discomfort down below for which I have just started taking Replens.
I too suffer with nausea, increased salavia during the day (I dribble at times)!!! I also have a very dry mouth at night and have to take a drink to bed with me for when I wake up. I've also noticed I am increasingly tired - today I slept for 4.5 hours and that was after a full 8 hours sleep! Not sure if this is a side effect or what. I'm also on Herceptin.
Tamoxifen Brands/Types I have been on Tamoxifen since 1st Jan - the Onc gave me a months supply and then when this ran out my GP prescribed me another 3 months. I cannot remember the brand/type of the original tamoxifen but I know the ones I have now are different (APS).
I am definately feeling very naseous, windy and have increased saliva during the day and a dry mouth through the night! I dont want to go back to the GP as I'm sure he will think I a paranoid as I didnt want to take them in the first place. On the original prescription from the Oncologist I suffered only night sweats/flushes so thought I had got away quite lightly.
Has anyone else suffered from this or is it me, I'm fed up with the naseau as was very sick all through chemo, I dont think I could stick this for 5 years.