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Fatigue and Tamoxifen

76 REPLIES 76
quizzer
Member

Re: Fatigue and Tamoxifen

Hi, 

if you are replying to my post re: povidone think you may have misunderstood.  As far as I know there are no studies being done about side effects of povidone - if there are please let me know.  I have an iodine allergy and have over time have had consistently bad reactions to some tablets [but not others with the same main drug] so by a process of elimination arrived at povidone as the common ingredient - checked with the pharmacist who immediately said povidone/iodine.  Mention it to your dentist as well, they may not be aware that it is in some antibiotics.

 

Have been on Tamoxifen [and some brands also contain povidone, I am sick of reading labels] for seven weeks now, much more bother than Anastrozole, hot flushes have subsided but itching is now the problem plus an uncommon side effect that lymphoedema is worse.  Am discussing this with lympho nurse next week and may come off drugs altogether - only two more years to go anyway and only minimal long term effect.  Onco did say this was a possibility when Anastrozole became unavailable.

 

didi
Member

Re: Fatigue and Tamoxifen

Hi guys

i didnt realise that tamoxifen gave you fatigue i thought i was feeling tired just because i feel so low !!

Been on it now for nearly 2 months, the night sweats are manageable but thats probably because its cold, dreading them in the summer, and i dont think my concentration is brill but again put it down to getting used to the idea of Cancer!!

I will check the boxes though to make sure i get the same make.

 

hope everyone is well 

Di x

Peartree
Member

Re: Fatigue and Tamoxifen

Great to see that study is being done! Can you tell me who's conducting it?
I'm now 7 months post zoladex, hormone levels are still way down but even the small changes have made a difference to energy levels. My brain fog is a lot better now. I'm able to remember more words and connects are much better. Spatial awareness is almost back to normal. I'm not saying it's not still there but for me I think Zoladex was really a double whammy! The last months I've been able to actually do evening activities: it's such a relief. It's still a hard slog but I'm seeing I can hopefully now make it to the 5yr.
quizzer
Member

Re: Fatigue and Tamoxifen

Hi,

 

Reading this with interest as may have to go on to Tamoxifen as can no longer get brand of Anastrozole I have been taking.  I am interested to see the difference it has made to some people changing brands as this has been my experience with anastrozole.  I am lucky that my GP is excellent.  Suggest that you have a look at the excipients in the tablets.  I have a problem with Povidone which is an iodine derivative,  it is in some tablets and not others.  Worth a look.  I find it makes an immense difference.

Povidone is alos in many other tablets so if you have problems with others this may be the answer.  Hope this helps.

hopalong
Member

Re: Fatigue and Tamoxifen

Hi all,

Quick update, after 2 months of Relon Chem my fatigue is more controllable, still fall asleep easily mid afternoon but not the overwhelming tiredness that made me physicaly sick and felt that I was walking through treacle.

I was at oncologist yesterday and mentioned my slight improvement on new brand. He noted the brand name swap.

I'm also doing some research for breast cancer now about tamoxifen in younger women and have to comment on side effects, brand and attitudes to taking tamoxifen including stating if you have missed doses etc. The aim of study is to see how younger women can be supported more when taking tamoxifen.

 

I managed to persuade the oncologist to let me try zoladex on its own for 2 months, to see how I feel on this. They were reluctant due to me reporting an improvement with new brand. I stated my case about it being a quality of life issue, I'm not living at the moment just existing. I have to continue the tamoxifen for 1st zoladex as he said the zoladex forces the body to make estrogen at first so my risk is too high, but then for next 2 can go without and see how I feel. The plan is to then try either tamoxifen again and zoladex or switch to an aromatase inhibitor.

Jill1998
Community Champion

Re: Fatigue and Tamoxifen

Good luck!!!
Wendyy
Volunteer

Re: Fatigue and Tamoxifen

Hi Jill

 

No more info sorry. Just a comment from a couple of the pharmacists when I went on my 'treasure hunt'. 

 

This ***** disease always find a way of taking up time in our lives! Heading for the yellow pages!

 

Wendy x

Jill1998
Community Champion

Re: Fatigue and Tamoxifen

I have one pack left,did they give you any idea of whether this was going to be a short term issue Wemblo,it's a pain when you have found brand that is manageable for you but can't get it.
Wendyy
Volunteer

Re: Fatigue and Tamoxifen

Magic

 

I understand entirely, 7 days of Wockhardt made me feel dreadful. Fortunately my GP was happy to give me another prescription enabling me to get Teva again. Good luck in sourcing it. I rang round many pharmacies before I was able to get any, I'm told they have a manufacturing problem. I'm due a repeat prescription shortly so will begin the search again. 

 

Best of luck Wendy xx

Jill1998
Community Champion

Re: Fatigue and Tamoxifen

Hi Magic, I've spoken to lots of women who have had quite significant side effects with one brand of Tamoxifen but not another.Teva generally seems to have a better track record.I would see if you can get another prescription from G.P if they specify a brand the chemist is supposed to try and get that for you , Boots ordered Teva for me, but I have heard it can be hard to get in some areas.Good luck you can't continue feeling like this without swapping brands again and to see if it helps.
magicme
Member

Re: Fatigue and Tamoxifen

Hi everyone,

I started on Tamoxifen (TEVA) at the end of August. I did have various side effects that were a bit bothersome at first, but seemed to settle enough for me to "tolerate" it.

My new pack is Wockhardt and I am feeling dreadful - ready to pack in life!

I originally took 3 tablets from new pack,( just in case of problems!), before I had finished the first pack. This coincided with me visiting the dentist and possibly Zoladex side effects kicking in 2 weeks after receiving my first dose. The day after taking the 3rd tablet, I could not get out of bed until the afternoon- complete muscle weakness! Got someone to take me GP, who put it down to Zoladex side effects, not the different brand of Tamoxifen or after effects of a "heavy-handed scale and polish"!

 

I finished taking my original pack of Tamoxifen (6 tablets), was not too bad, still tired/drained, but could get out of the house and walk the dog!

 

I have now taken 4 tablets from the Wockhardt pack and am struggling to get out of bed and move about. Feel so out of sorts, that I want to stop all treatment!  I cannot do anything,I am that drained.

Decided not to take tablet tonight and try get to GP and ask for another prescription to get a different make (TEVA) hopefully. While it is not perfect I could still function on it!

If I cannot get the other make to try again, I cannot carry on taking Tamoxifen or risk getting the second dose of Zoladex.

I have no quality of life at present. It can't be all in my head if others have had problems too!

 

traceytopcat
Member

Re: Fatigue and Tamoxifen

Aww its same for me all kicking back in now i am back on them. Got swelling and pains in brest hoping its hormonal x
Wendyy
Volunteer

Re: Fatigue and Tamoxifen

Thank you so much for this link. I'm tempted to print it off and take it to the pharmacist who dismissed my request. I knew I was right but it nice to have it confirmed by research. X

Peartree
Member

Re: Fatigue and Tamoxifen

It's so frustrating when Drs/ pharmacists deny the patient experience! Luckily there was a study done on it which backed up the anecdotal reports (where Arthralgia was concerned) :http://www.ncbi.nlm.nih.gov/m/pubmed/20347307/ To think some people go off it where a brand change could make the difference. I couldn't walk when I changed brands (still have all the other effects: I don't use Nolvadex as in the study but genox: my cancer hosp confirmed it had the least excipients). Luckily they are not closed minded! 🙂
Wendyy
Volunteer

Re: Fatigue and Tamoxifen

Hi Ladies

 

I have seen my sympathetic GP and she agreed my symptoms could be due to the change in brand because of the timing of my feeling unwell and I was given another Tamoxifen prescription. I rang round our local pharmacies to try and get Teva again, although not perfect, I tolerated them better than Activas , fortunately I found the last 2 packets in my town. I'm now also waiting for an ultrasound scan to, in the words of my GP 'make sure we're not missing anything' 

 

Thought you all might find it interesting that one of the pharmacists I spoke to told me in a patronising manner that there's no difference in the brands!!! I chose to ignore his comment as the Activas tablets which I guess he's never popped out of he foil have a strong solvent-like smell and taste. Stick to your guns ladies and don't be fobbed off, I think we know our bodies better than anyone else. 

 

Stay cool ladies!! 

 

Wendy x

 

 

 

 

 

 

 

hopalong
Member

Re: Fatigue and Tamoxifen

Hi Sheena, I changed on to Relon Chem. The fatigue seemed much better. I finished the pack today and have gone back to Teva, (as thats what pharmacy supplied) If fatigue occurs badly again will be phoning GP for another prescription stating relon chem

Peartree
Member

Re: Fatigue and Tamoxifen

I can not believe how relieved I am to find this post. Even though I'm 2 1/2 years in, I saw both a new onc and meno specialist who say, fatigue is not due to tamoxifen. I know it is. One day I was normal then I started tamoxifen/ Zoladex and all the symptoms started. Some hot better with time but the fatigue has worsened. It is so annoying not getting the acknowledgement that it's the damn drug. I came close to quitting this wk but my friends dying with trip neg and for me it reminds me I have a choice and to keep going but I hate it. I want to throw knives and forks at it. It may not be the tamoxifen as my levels are still low coming off the Zoladex but it's still validating to read the comments. If my onc said 'yes: it's the tamoxifen' it would be easier to stay on it rather than worrying it's something else and using public money with wasted tests and run arounds. Grrr!! The qual life versus gain (on individual relative risk) issue is very tough decision making! Hugs and love to you all xo
Sharnie
Member

Re: Fatigue and Tamoxifen

Hi Ladies, I have been on Tamoxifen for just over two months and have constantly felt exhausted, had lower pelvic pain, hot flushes, palpitations, felt really depressed and been suffering from insomnia. Saw my onc on Friday and he has agreed to switch me to something else. Not sure what - he's writing to my GP. I imagine it's an aromatase inhibitor as I am having a bone scan. He told me to stop taking the Tamoxifen straight away and said I would be fine not to take anything for a couple of weeks. I do feel better already after two days of not taking them. We do need quality of life as well - I have just felt like a zombie for the last two months. Hoping what I'm switched to won't be any worse!

gndfan
Member

Re: Fatigue and Tamoxifen

Hi Ladies, Traceytopcat I had my months break from Tamoxifen and what a difference . I felt really well , I actually slept through the night and the hot flushes stopped. However , had a phonecall from the BCN to say she had spoken to the doctor and I had to restart them again. I have to see how I get on again as they usually like you to try them for 6 months before they discuss changing. So Im now on week 2 . Im still sleeping, only a couple of flushes but so tired.  Zero energy just wish I felt more like the old me instead of a different person ... Next appt is not until November. 

Wendyy
Volunteer

Re: Fatigue and Tamoxifen

Hi Ladies.

 

I've been on Teva since October and have had hot flushes day and night. Have considered asking for a different brand. However by chance my latest prescription is Activas. It has a strong smell and taste, has anyone else noticed this. I've been taking it for about 10 days now and feel dreadful. My ribs ache, hot flushes just the same and could fall asleep on a clothes line!!!!

 

I suppose it could be nothing to do with the Tamoxifen and I could just be coming down with something. I feel like I'm turning into a hypochondriac. Just trying to decide how long to suffer before asking for the medics for advice. And who do you turn to GP, surgeon BCN or onc? I've  an appt in 5 weeks with my onc. Not sure I can wait that long. 

 

Im just at my one year Cancerversary and am waiting for the results of my mammogram, maybe that's not helping with my mindset at the mo' .  

 

Wendy xx 

 

 

Rosemaryanne
Member

Re: Fatigue and Tamoxifen

Hi Sheena

Didn't have the courage to take a break- kept visualising those little tumour cells munching on oestrogen! Gone back to the Wockhart, and this time it seems more manageable. Still got the flushes, but energy levels seem to be climbing. Mind you, I've had a week off work, might be a different story by next Friday!

How are you? xx

missmore
Member

Re: Fatigue and Tamoxifen

Hi traceytopcat
how are you feeling now? Did you get a different brand?
sheena x
missmore
Member

Re: Fatigue and Tamoxifen

Hi rose
did you decide to take a break in the end?
sheena x
missmore
Member

Re: Fatigue and Tamoxifen

Hi hopalong
what brand are you taking now and is it agreeing with you?
sheena x
traceytopcat
Member

Re: Fatigue and Tamoxifen

by end of 2 week break, went back on them and still feeling good, although oncologist says it will come back, but so far so good 😉 x
Rosemaryanne
Member

Re: Fatigue and Tamoxifen

Hi

I agree. The fatigue is something I find totally frustrating. I can hold things together for a while, I can act "normal" at work for my reduced shifts, but it's damned hard, and my colleagues just don't understand the effort it takes.And I suppose they shouldn't have to. I have a 10 minute walk across town to get the bus home and it's then that the exhaustion really kicks in. I'm lucky in that I don't get any pains, but the nausea is constant and pretty dire. Just picked up a prescription for another 2 months worth. I feel so old and weary, ok I'm 61, but never felt old before now.

Can I please ask those who took a break: was the improvement immediate? I'm thinking maybe 3 months on it and one off, if that month off let me go back to my old self for a while.

Love

Rose x

 

hopalong
Member

Re: Fatigue and Tamoxifen

Just taken the 1st of my new brand of tamoxifen, was previously on Teva. I'm hoping that the brand change will improve my fatigue and hip pain. Within 2 weeks of starting back after my break I was back to falling asleep in the afternoon, I will learn to live with the pain but I can't cope with the fatigue.

traceytopcat
Member

Re: Fatigue and Tamoxifen

Thanks not sure on make names but going back on ones i have then see oncologist and swap to other make. Think it will be a few months. Glad i have a holiday coming x
Butterfly318
Member

Re: Fatigue and Tamoxifen

Evening Traceytopcat

 

I have just gone onto Letrozole but was on Tamoxifen for 2 years.  Initially had Wockhardt and could hardly move.  Tried a few different ones and i found TEVA to have fewest side effects.  It was hard to get hold of for a while but last 12 months or so not too bad.  It is worth trying different brand although most have some side effects.

 

Take Care   Gilly x

traceytopcat
Member

Re: Fatigue and Tamoxifen

Gnd i am going back on them tommorrow. Seeing oncologist monday. But they also said swap to another make of tamoxifen !!!
traceytopcat
Member

Re: Fatigue and Tamoxifen

10 days on break and feeling much better but know i have to go back on. I can cope with moxt symptons but not the aches they were awful
. Due to go back on next week then see oncologist i know i have to take something so we will see gl all x
lottie63
Member

Re: Fatigue and Tamoxifen

Hi Ladies

                I have been on tamoxifen since August 2012 and I am exhausted on it, I want to have a nap every afternoon usually b/t 3 and 4 it hits me and I can hardly keep my eyes open, with other side effects I have considered asking to come off it but I am too frightened to..... its a tough call as sometimes I feel ok and others I feel rubbish so I am just getting on with it but if it worsens I will ask to see the onc for advice

 

L x

gndfan
Member

Re: Fatigue and Tamoxifen

Im exactly the same as you Traceytopcat, been off them 2 weeks now and I actually feel so much better. Its bizarre but I will give it another 2 weeks and then give them a ring and see what they have to say. 

hopalong
Member

Re: Fatigue and Tamoxifen

This is my 3rd week back on tamoxifen and back to feeling tired and since Friday have fallen asleep in the afternoon everyday. Joint pain starting to increase again but not to the point of waking me up, so hoping it doesn't and last week I had over 100 hot sweats, have started acupuncture for this though, and oncologist said it worked in 70% of cases. When this pack finishes I am going to try a different brand to see how I get on with it/if side effects are different.

Will keep checking thread and see how others having a break are getting on. Take care all xx

traceytopcat
Member

Re: Fatigue and Tamoxifen

let me know hoew you get on, my aches are much better 1 week off, and less headaches an dless tired, but i have more 'period type' pain, bizzarre, but they said ring back next week and go back on them, then ring again and ask for oncologists appt x

 

gndfan
Member

Re: Fatigue and Tamoxifen

Im on a months break to now as have been feeling so bad with them. I was told by the Breast Clinic Doctor to see how I feel not taking them and then give them a ring to discuss what to do in a months time. They said not everybody gets on with them so its reasurring to know.  I would be  interested to see how you get on too  Traceytopcat.

traceytopcat
Member

Re: Fatigue and Tamoxifen

Spoke to breast care nurse as aches were awful today. They have said come off it for 2 weeks 😀😀😀😀😀. Cant wait x
Rosemaryanne
Member

Re: Fatigue and Tamoxifen

Thank you, Gilly, that's reassuring to hear.

Strangely, at the moment, all my old arthritic aches and pains are better than they have been for a while. Maybe because I'm not pushing myself due to the fatigue?!

Once the nausea goes and I get some energy back (6 weeks to the 6 month mark), who knows- I'll be skipping around like a 6 year old- maybe!

Thanks Tracey! Bag packed, weather cooled down a bit. Sorted.

xx

traceytopcat
Member

Re: Fatigue and Tamoxifen

Thanks gilly its good to know
My day sweats arent as bad. Getting lots of headaches and the fatigue is getting worse. I feel like an old woman hobbling about. Readsuring to know its normal but frustrating still. Have a nice break x
Butterfly318
Member

Re: Fatigue and Tamoxifen

Morning Rosemaryanne and Tracytopcat

 

Just to reassure you that most of the SE do reduce,  i have been taking Tamoxifen for two years now and after about six months the sickness and hot flushs did reduce.  Sadly the bone / joint pain seems to be the one that remains for me, but to be fair even that isn't as bad.  I do some evidence of Arthritis so that won't be helping.  I know we have to be positive for our families but sometimes thats a struggle.

 

I find Yoga / Pilates has strengthened my muscles / core and that has helped, also swimming a few times a week (the more the better) is helpful for the joint movement.

 

Sometimes i feel so 'High Maintenance' these days.

 

Gotta get outta bed now and go to work....i hobble round the bedroom for a bit when i first get up...

 

Take Care Gilly x    

Rosemaryanne
Member

Re: Fatigue and Tamoxifen

Just to cheer you up, my GP said the SEs last as long as we take the horrible stuff! Although my aches have now gone. Just the tiredness, nausea and hot sweats- maybe made worse by the weather? Hope yours ease off soon

I'm going to join my daughter and her family for a few days in the Yorks Dales on Tuesday. Could have gone for a full week, but don't think I could stand the pace. I have two very energetic 4 year old grand-daughters who are a joy but exhausting. My daughter is newly pregnant and we share a lot of symptoms, except mine won't result in a baby - not too unhappy about that...!

Only 4 and a half years to go xxx

 

traceytopcat
Member

Re: Fatigue and Tamoxifen

Your welcome. Same here. Upbeat and pozitve for family. But when u feel rough they dont get it. Just had my worst weekend yet. God knows why. So tired i felt ill. Starting to get to bone and muscle aches and serious bad night sweats. When will it end b****y tamoxifen x
Rosemaryanne
Member

Re: Fatigue and Tamoxifen

That's the brilliant thing about this forum. We all understand that recovery can be as difficult as active treatment, and that it's never b****y over. it's so reassuring to know that I'm not going crazy, or if I am, so are many others!

I don't want to go round whining and complaining, but it's difficult whan others seem to think it's all done with, forget it and move on. Ok, I am moaning and complaining, but it feels safe to do that on here. I wish it was possible to please everyone by going back to my old self, just a bit too hard right now. 

Thanks, Tracey, for letting me ramble

xx

 

traceytopcat
Member

Re: Fatigue and Tamoxifen

At least we know its not in our minds.everyone keeps saying 'youve been through so much ,give it time' thats no help at all. Wonder if they would say that if they felt rough for 6 months 😢
Rosemaryanne
Member

Re: Fatigue and Tamoxifen

Thank you, Lucy

I don't think there are any "Moving Forward" courses near my area (Hull). I have spoken to my GP who suggested counselling rather than medication, and recommended McMillan. Stupidly, I struggle to find the motivation to actually get round to organising this. But I will, eventually.

Regards

Rosemary x

Lucy_BCC
Member

Re: Fatigue and Tamoxifen

Hi Rosemaryanne

Sorry to read that you are feeling low, here's a couple of links to the BCC 'moving forward' support and information which you may find helpful:

https://www.breastcancercare.org.uk/information-support/support-you/local-support/moving-forward-aft...

https://www.breastcancercare.org.uk/information-support/publication/moving-forward-resource-pack-peo...

Take care
Lucy BCC

Rosemaryanne
Member

Re: Fatigue and Tamoxifen

Thanks, but I tried that- couldn't get past the smell! I carry ginger nut biscuits everywhere. Not something i ever went for before, but they seem to help. I never expected to feel this low after active treatment finished, and also find it frustrating. Just can't be bothered, and that is not me. Plus I'm boring everyone else. They think i should be jumping for joy! xx
traceytopcat
Member

Re: Fatigue and Tamoxifen

Its awful been on tamoxifen since jan 2015. Just came back from long weekend at butlins and so frustrated. Did same weekend last year. Same during day and out all 3 eveningz drinking and dancing. But this year oh noooo. So tired i felt ill on lazt night and stayed in. Ambled round during the day. Thought i would be fine but now feel like i need a week to recover. So dissappointed with myself and fed up with it all 😢
traceytopcat
Member

Re: Fatigue and Tamoxifen

Get waitrose lemon ginger and green tea works wonderz on nausea x
Rosemaryanne
Member

Re: Fatigue and Tamoxifen

Hi

Going into my 4th month of Tamoxifen now, flushes aren't so much of a problem and the aches seem to be settling down, however the sheer exhaustion seems to be getting worse, not better. I was on a phased return to work, but have now agreed to permanent part-time hours. Not only do I constantly feel shattered but I drop off to sleep randomly. It may be the remnant of rads, who knows.

I got a copy of the onc's letter to my GP, in which it said I had agreed to continue with Tam for the recommended 5 years however the benefits are likely to be quite small as I have an excellent prognosis tumour. So I guess it's up to me? However, if I stop taking it and the cancer comes back, I would always blame myself for not persisting with this half-life I've got right now.

I really don't know what to do

Love

Rose xx