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Tamoxifen and feeling really, umm, not right??

42 REPLIES 42
tracy66
Member

Re: Tamoxifen and feeling really, umm, not right??

I'm taking tamoxifen also - just over a year.  I find myself really tired, really unable to concentrate at times, confusion, memory loss (this morning I asked my husband why he left the kitchen sink running and he said he didn't - but I did it).  My dr let me take a 6 week break a while back and it got better, but now that I've been back for about a month and I'm starting to see the crazy again.   I'm totally with you..its "not right".  I also seem to be constantly bruised and half the time I don't know what from.  I don't know if that's a memory issue or a bruising issue I guess.  Of course I don't know your situation, but the dr did say there were some other options we could try if this becomes to bothersome..although those also have their issues.  I guess you just pick what annoys you least?    I'm writing this post because I'm sitting here unable to concentrate on my work..go figure.

Tamara
Member

Re: Tamoxifen and feeling really, umm, not right??

I've been on Tamoxifen for 3 1/2 years. While my Oncologist claims it shouldn't cause thinning hair and tiredness, I personally feel she's wrong. I'm chronically tired and my hair is much thinner than it was. 

I actually ran out of my prescription because of some kind of mix up with my refill and went 4 or 5 days without it. Guess what! I felt great and had so much energy. I hate what this pill has done to my life but I'm told it gives me the best chance of the cancer not returning. It's a Catch 22! 

elinda45
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Lisa

So sorry to hear about all you're going through. That must have been so frightening for you collapsing like that. I hope that your employers can now see just how much you're having to go through! I think this might be the time to rethink about how quickly you return to work ensuring this time that you give yourself enough time to be fully recovered once your treatment/surgery for the pneumothorax is completed and once you've had your gynae referral and possibly gynae treatment.

I'm sorry I can't give any advice on the VATS procedure. I'm not at all surprised you were tearful about it all but take it one day at a time and be kind to yourself.

Thanks for keeping us updated and good luck with it all tomorrow.
A big hug to you
Elinda xxx

lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

It never rains, just pours... Gynae referral postponed as I couldn't get to see my GP this week - collapsed in the shopping centre last Sunday with another giant pneumothorax :(Who knew that shoe shopping was so dangerous 😉 Three days on a chest drain and suction and all is good (ish - enough to send me home for the weekend as surgery wasnt possible last week) but I have to go back in next week for VATS and pleurodesis on Wed. I am not looking forward to it one bit - the pain was awful with the drain, ESP with the insertion (which took much longer than normal), even with a lot of local anaesthetic and morphine. Guess I have recent rads to thank for that, all the nerve sensitivity and adhesions all over my lung 😞 Am expecting a miserable, painful time of it, but hoping the positive step of getting my lung looked at properly and hopefully fixed will help in my recovery. At least it is (planned to be) only keyhole surgery, and am have been offered a place on a pain management trial at the same time as having my op. Hopefully I won't just get the placebo...!

Is there anyone here had VATS pleurodesis and can offer advice or words of wisdom on coping - I was going crazy last week and very tearful all the time 😞

(I realise I have taken my own thread off topic, for that I apologise. I just didn't feel important enough to start a "news about me" thread but wanted to update those of you who kindly ask 🙂 Thanks for being there ladies!)

Have a healthy weekend ladies,
Lisa xx
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Penny, Elinda,

Thanks for your replies and encouragement! I am so relieved that it is "only" a cyst. Will certainly ask the gynae if it might be due to the tamo and see what they can do to manage the pain if not the thing itself.

Yes, I think I was really lucky to have a sonographer who had patience and time to listen to me and not just do what was requested on the referral sheet. I felt a bit guilty at telling a little white lie when she asked if I had mentioned my pelvic problems to my GP; I had forgotten when I saw my GP and he made the US referral, but I figured I was there anyway and seemed silly to have to get amother referral when she had time as it wasn't busy. As you say, Penny, it isnt worth suffering in silence when people can help. Phew, I guess it might've been different if they were fully booked yesterday and I would still be wondering. Just hope she (and I) don't get into trouble over it!

Elinda, your track record is good so far so I wouldn't be surprised if you are right about the back/shoulder pain being related to less activity and treatment too - it is the same side (right) as my recurrent pneumothorax and the bc which was treated with lumpectomy, SNB and rads to breast and axilla. The tumour was quite deep, around 10cm in, so getting close to the chest wall (I have small breasts) so the tissue damage after survey and rads would have also been quite deep. I have not been able to do as much as before tx, both from aching and the tiredness; my joints do ache and crack much more than ever before which is probably a combination of treatment and being less active. I am having a look into yoga/pilates at my gym (I joined in May this year, my first ever memberhip, pay £50 a month and have only used it a handful of times... typical! Might as well try a new class!) as that might help with the stiffness and aches. I'm trying to be patient and give myself time. A lady at work had bc 16 years ago and today she said she still hurts from time to time (mostly from her ANC though, and I'm not sure if she was a mx patient or lumpectomy and rads).

Have a lovely weekend ladies, I'm off to put my feet up with a cuppa!
Lisa xx
elinda45
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Lisa

So pleased that you have updated us. Sounds like you were very lucky to get a radiographer that took a look for you and didn't stick to just the area she'd been told!

I thought a cyst sounded like a possible option and this may of course be nothing to do with the tamoxifen or treatment at all and one of those things you would have had anyway. Definitely worth asking the gynaecologist if he/she thinks its related to the tamoxifen.
In terms of your upper back/shoulder pain - is the side of your surgery and what did you have done? I've had quite a lot of shoulder pain following my mx and axillary clearance. Depending on what you had done, it could be the next step might possibly be to get a physio referral. But you can get joint pain with tamoxifen and younger women do seem particularly affected by that it would seem from the forum. The other thing is that it's still such early days in your recovery and your body has had quite a bashing and it will take time to heal fully. Maybe you've been quite a lot less physically during your treatment and recovery and this might affect your back - I know it did mine.

If you think there is any likelihood that your shoulder pain is related to acid reflux (ie when you drink alcohol, have acidic or fatty foods, large meal or spicy food, worse when you lie down in the evening) then it would be worth speaking to your GP about a course of proton pump inhibitors (such as lansoprazole or omeprazole). They usually give you a 4 week course and see if that clears things up but you can go on them for longer.

I hope that you're now feeling much relieved that all is well with your liver and gall bladder and you can put things to rest there.

Keep us posted
Elinda x

Penny47
Member

Re: Tamoxifen and feeling really, umm, not right??

Lisa well done your U/S radiographer to persist and use his/her head and listen to the patient! (I always find it hard to speak to professionals lying down!) The relief must be enormous and once again, a lesson in not Suffering in Silence! Good luck!
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi ladies,

Just a v quick update on me in case anyone is interested or it can help someone else in the same boat.

I had an abdo U/S today to check for gall stones and look at my liver - all fine there 😄 No explanation of the upper back/right shoulder pain and creaking, mind.

While I was there I mentioned my pelvic pain, feeling uncomfortable/full in my lady parts, and spotting and the sonographer took a peek... Elinda, you were spot one with the cyst! Well done you!! A 7cm cyst originating from my left ovary!! Anyway, all looks B9 and just a "simple cyst". Waiting for GP to refer me to gynae; they might drain it but if not will keep an eye on it over the next 6m.

I don't know if I can blame tam, and a cyst isn't reason enough stopping taking it, but I haven't had cysts before. So there might be some causal relationship. Although I know cysts are common in non-tam women, and there is some history on my mum's side of the family. Why don't parents tell you these things before it happens! 🙂 But I guess we know what caused the spotting, cramps and maybe even the sciatica I've been getting...

Such a relief it isn't anything else!

Lisa
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Jenny29,
i think you're right about the brand, it's all generics in the UK now. I normally take Wockhardt which I get from Boots; when Superdrug filled a script a few week back it was Relon and I didn't like it so am back on W now. Fatigue and feeling awful still not better - so somehow I feel "better" on the same brand, in terms of anxiety about brand at least!
Thanks for sharing your experiences; hope you have an ok run on tam this time around.
Lisa xx
jenny29
Member

Re: Tamoxifen and feeling really, umm, not right??

So just started tamoxifen again, taken my first pill. Had several years off it but now back on it. Dreading having the same side effects -some were worse than others. I took it for nearly 5 years last time and I didnt have the same se all the time, so thought I'd share my experience. I found some of the advice on this site very helpful back then, don't know if the advice is still there - I tried clonodine (migrane medication) which seemed to help with hot flushes and night sweats, which lessened. Some weight gain, light headedness and aches but okay and liveable. Tiredness and fatigue and brain 'fog' the worst but this also seemed to vary depending on the brand of tamoxfen. The tiredness was also part of recovering from rads and I tried to pace myself, which helps. Previously, most of the time I took Nolvedex D which seemed to have less severe side effects but dont think its available anymore.
Guest user
Not applicable

Re: Tamoxifen and feeling really, umm, not right??

I've been on Tam for about 3 months - it is harder to lose weight, but I'm certainly not gaining any. (I am very careful about what I eat though).
I get mild night sweats and the very occasional day-time 'glow' - not even close to being a hot flush really.
Brainwise - yes, I definitely know my brain is not as sharp as it was. I make mistakes, forget things, and I don't absorb information as I used to. I get very irritable too - very like PMT used to be. The net result is I get angry with myself for making mistakes, and slightly paranoid that my employer will notice my new failings and down-grade my job. This may be due to the Tam, or might be a chemo after-effect, but either way I am aasuming it is permanent, and am making sure I adjust my way of working - for example by making more lists of things to do, and reading things more carefully.

I have not mentioned to my employer that my brain is affected - apart from some mild aphasia that means I lose words. They have been fabulous all the way through my treatment, and I am keen to continue working for them, at least till I pay my mortgage off!
Mindy63
Member

Re: Tamoxifen and feeling really, umm, not right??

Pangiewangie-I'm on Tamoxifen and have lost almost a stone in weight. I have been sticking to a slimmers world type plan and have tried to get daily exercise even though I'm knackered. I've only been taking it for 3 months but am trying very hard not to put weight on.

elinda45
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Pangiewangie

You're looking at a thread specifically about problems with tamoxifen so you're going to be hearing the negative side. Thousands of women take tamoxifen with minimal if any problems not just in the UK but across the world.

This forum is great but the temptation to look at things that might make you more anxious is always there. People on the whole, post either because they're having problems or need some help. Women who are doing really well on tamoxifen and not having problems are less likely to post.

Try not to worry about side effects of a treatment you haven't started. Everyone is different and for many, even the side effects are bearable. Hope the rest of your treatment goes well.

Elinda x

Guest user
Not applicable

Re: Tamoxifen and feeling really, umm, not right??

really rather terrified now about the need to take tamoxifen. i had hysto with overy preservation 6 yrs ago and am 48, cannot BEAR the idea of excessive weight gain, and am self employed so cant not work..... radiotherapy imminant not sure about chemo need yet. OMG i am terrified as there is only me supporting myself financially. has anyone got anything GOOD to say about tamoxifen? does EVERYONE have terrible side effects with it?
elinda45
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Lisa

I hadn't realised that you were only 4 months post treatment so the tiredness and general feeling of being unwell is hardly surprising. In fact, I'm surprised you're even back at work yet!!! Some people have 6 months off work for a hysterectomy and you've had so much more done.

Apart from the tamoxifen, there is something called 'chemo brain' whereby chemo can lead to brain feeling fuzzy and tiredness etc. It's so soon after treatment and it can take far far longer to recover completely. I am wondering if you went back to work too early?

What you're describing sounds more like normal recovery time than long term fatigue to me. I could barely walk for 20 minutes without getting very out of breath and having to lie down afterwards at 4 months post treatment and certainly couldn't work or play sport . I'm not in any way dismissing what you're experiencing but it might be worth re-framing it for your employers but I'm no expert in what is actually classified as 'fatigue' - Macmillan could probably help on that and others may be able to advise. Incidentally, I went onto ESA as I was self-employed and didn't have to have any medical for the first 12 months post treatment because it was accepted that recovery time was that long.

the fact is that your employers sound incredibly ignorant if they are saying you look okay and there is no such thing as cognitive impairment post cancer treatment or with hormone therapy. Every part of the treatment is a real bashing to the body and chemo and rads really take it out of you. I agree completely with the advice to contact Macmillan on this employment issue as there are legal issues too on this and they can advise.

Another thing that drains us is anxiety and clearly and understandably you are very anxious about the physical symptoms you are experiencing. Again that's nothing unusual so soon after treatment and I've been much more anxious since my cancer diagnosis and I'm 4 years down the line. The last thing you need is the worry about your job on top of all this.

I'm not sure what the best thing to do is but I'm sure that being called a malingerer even in jest is absolutely not acceptable and I'd make your union aware of this. How cold-hearted some people are and ignorant with it.

Everyone's recovery is different and you need as much time as you need. Some times people go back to work too early and then start suffering more with tiredness etc.

Do you have a sympathetic GP or Oncologist or breast care nurse you can talk to? I really do wonder if you went back to work too soon and are now struggling.

take care and big hug to you
Elinda xx

lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Thanks Penny, as if we don't have enough to deal with eh! Glad ACAS were able to help you; I will get in touch and see what they say. I know I'm heading for more trouble; the tamoxifen brain fog doesn't help my work efficiency or quality so I can understand they want to get rid of me. My boss and a another colleague on my level are looking at restructuring the team... I think I know wheat that means...

I've not been keeping a diary of events but will start now. I was referred to (in jest?) as a malingerer, right before a return to work review. There was also the time I heard someone say if I could play squash then I can work full time (exercise to combat fatigue, and I hardly got out of breath). They somehow think my fatigue is related to my collapsed lung (it isn't at all, I had the lung problem for month before bc dx and had no fatigue!) and don't recognise cognitive impairment or fatigue from cancer treatments. I keep being told I look ok, so they don't understand my fatigu
xx
Penny47
Member

Re: Tamoxifen and feeling really, umm, not right??

Lisa I hope you are keeping a diary of your contacts with your employer as you may be sailing into troubled waters. I had a brush with my boss over my fitness to work and I sought advice from ACAS on th suggestion of Macmillan and the advice they gave me was very good. Luckily in a way I am on SSP now so the whole thing is on hold. But I think HR in most workplaces has a long way to go to accept that Cancer really is a disability. They are usually pretty naff about Depression too! Good Luck!
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Elinda,
Pesky computer... Thanks for taking the time to re-type your reply!
I am seeing my onc on Monday and will talk severe fatigue, brain mooshiness, spotting and awful pelvic cramps. I have the abdo ultrasound booked for Thurs to look for any gall bladder/kidney/liver issues that might explain my pains and feeling rubbish. I'm not sure if the ultrasound will also look for cysts or womb thickening. Sounds possible - I was clear before tamoxifen so we will know the cause if any are there now! I will mention womby things to the onc and see if I need a different appointment/test from him. I think you might be right about joint pain in my back/shoulder area from the Tam, and/or reflux, especially as it is worse after alcohol. Hopefully not my liver packing up 🙂
I have decided to come off my antidepressant (mirtazapine) as it only makes my sleepiness and fogginess as worse, and I'm not coping very well with the side effects (e.g. restless legs at night) of that either. I just hope my depression doesn't come back, and that I start to feel more alive soon. My psych says my lethargy is depression, but I'm pretty sure it's medication related. As you rightly say, fatigue is a known SE of tamoxifen. My psychologist also reminded me that 4 months post rads isn't very long, and even just one chemo can have effects for months/years afterwards. It takes ages to get over treatment, I know. Maybe I'm just being impatient or too hard on myself. But I don't like the new me 😞
On top of all this, my work are starting to be a bit funny with my only working part time and complaining that I'm fatigued and suffering from cognitive impairment. The HR director said it was a lie that I was brain foggy - the bloody cheek of the man! Apparently I look fine (i.e. not gaunt or jaundiced) - but as I pointed out to them I didn't have cancer on my face!!! So I am going to ask the onc to to write to work to explain cancer-relate fatigue as it applies to me/my treatments. Pre-empt the sacking. I don't need that extra hassle right now. Grr!
Thanks (everyone) for your support. Will keep you posted in how things go next week.
Lisa x
elinda45
Member

Re: Tamoxifen and feeling really, umm, not right??

Lisa - I typed out a long reply, posted it and it disappeared! Aaaggghhhh!

I still think that what you describe could be acid reflux - the pain can be terrible and I often get it upper abdomen.chest area. Other symptoms may be something different entirely, for example, tamoxifen gave me joint pain in the back. Spotting shouldn't cause you to roll around in pain so perhaps you need to discuss this - could it be gynae pain - a cyst for example?

the fatigue might well still be related to your treatment as it can take ages to go and may also be linked to the tamoxifen which has tiredness/fatigue as a side effect.

Please let us know how you get on with your tests.

Elinda x

Beeny
Member

Re: Tamoxifen and feeling really, umm, not right??

I just felt I had to join this thread. I had an MX in April (3 grade 2 IDC tumours, extensive DCIS and LCIS, ER+ 8/8, no node involvement). No chemo, no radiotherapy, just tam. I took it for about 3 weeks and then just stopped. The side effects were just too damaging to my quality of life. I put weight on immediately, developed a moon face, was mentally confused all the time to a ridiculous extent. One evening I pointed out the 'beautiful red moon' to my son. He told me it was the sun going down. I argued the toss with him, even saying, "if it's going down then must be the moon". The fatigue was like nothing I've ever experienced. For five days I couldn't be bothered to wash, get dressed or even answer the phone. Getting hives one night was the final straw.
I confessed all at the clinic, and had a good chat with my onc. She looked at the predicted benefit from taking the tablets (0.9% over 5 years, 2% over 10) and said OK, don't take it, we'll review the situation in a year. She said that it would take up to 3 months for the drug to completely leave my system, but within a week I felt 'myself' again. I'm back at work, and have a much more positive mental attitude. I'm glad I made the decision as I've got my life back, and my children have got their mum back.
Who knows what I'll do in a year's time, but for now I'm going to get over the mx, and get my life back on track, and enjoy every moment until decision time comes round again.
Guest user
Not applicable

Re: Tamoxifen and feeling really, umm, not right??

It's such a relief that I'm not the only one. Ive , taken tamoxifen for nearly 3 years and the side effects have really gotten to me the last few weeks. I suffered terrible fatigue during hercrptine and I feel like I have no energy , perminantly in a fog and can't concentrate. Ive only managed a few hours the last 2 weeks in work which I feel is rediculous as I'm onky 39. Yhink my boss and team are getting really fed up now. Im off to the hospital to see the onc hopfully yhis week following bloods and an mri scan.
Just like the other ladies I also have terrible acne and know that if I drinj a few glasses of wine I will spend the following day in bed. Id be interested to know what others have done as coping strategy
Sorry about thbad spellingand grammer but the sitedoesn't work well on my tablet and I can see the text, t
pelma
Member

Re: Tamoxifen and feeling really, umm, not right??

hi was just reading all your comment im been on tamox for a year now hot flushes have now gone but bad cramp like period pains and swelling stomch so went to my gps got sent for scan to find i have thicking to the lining of my womb so know have to wait for hospital appontment to see my onc
Guest user
Not applicable

Re: Tamoxifen and feeling really, umm, not right??

Hi First time I'd posted and it it took a while to come up and then as I"m so tired on Tamox I was in bed asleep.
Im seeing my cancer doctor. not putting up with this! It's quality of life isn't it and feeling rubbish effects everything. keep you posted. I had stage 1 not in lymph nodes or anything.
Lozzarooney1
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi ladies

I'm the same with the SEs - been on Tamoxifen 3 months now. Also have nausea and have found I can't tolerate some foods (including chocolate!!!) and coffee which I would previously (before BC) drink by the bucketload!!

I haven't had a period for 14 months (am 51) but my blood results were inconclusive so I'm still considered perimenopausal. I've just been prescribed Venlafaxine which apparently should help with some of the side effects (am hoping it'll help me sleep as I'm only managing 4 hours a night if I'm lucky!). I hate that I can go from tears for no apparent reason to almost uncontrollable rage - that's not me... and I don't like it 😞

Am to see Oncologist again in 2 months - if I'm still having problems then he's offered to refer me for a Oophorectomy (removal of ovaries) so that I can go on Arimidex (an Aromatase Inhibitor for post menopausal women). I scored 8/8 ER so hormone therapy is necessary. Of course there's no guarantee that I wouldn't get side effects from Arimidex ...

Am flushing badly as I type this Grrrrrr!! And am fed up to the back teeth of 'well meaning' non BCer people and their poxy platitudes!!
Thats it... rant over! Wish the flushing was tho!! Phew its flipping hot!!!
Hugs to all of us lovely ladies
Lozza xx 😉
samjs
Member

Re: Tamoxifen and feeling really, umm, not right??

Blimey ladies this all sounds horrendous. Possibly even more so as I am expecting to be put on them very soon as tomorrow is results day following wle. This journey sounds like it just gets worse. Hate this flaming disease and what we have to endure to get rid of it and try to keep it away.
Sam x
spookymoo
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi everyone recently started the dreaded Tamoxifen. Night sweats and hot flushes unbearable now (already had 6 mths + due to chemo of them . (Thanking you so much really needed that on top of everything else!).
And now, spots. Flipping acne breakout. Am using my teenage daughters spot cream. I'm bl**dy 44! Wouldn't mind if I had the figure, the social life and the carefree attitude. All I have is moodiness, stroppiness,.angst and flipping spots!!!!!!!!!!! Kevin and Perry have nothing on me.
sarah63
Member

Re: Tamoxifen and feeling really, umm, not right??

I have put two stone on;-( feel fat frumpy,moody,mushy,,emotional..oh hang on just like you..oh i hate it just been changed to something else as im 49 havent had a period for two yrs so they change you after 2yrs on tamoxifen to something that makes you feel the same;-( i was hoping things would improve but they are just the same i dont sleep very well either but when i had a 2wk break i was me again so happy with energy that i dont have now.i look 9months pregnant not a good look at my age.xx

Guest user
Not applicable

Re: Tamoxifen and feeling really, umm, not right??

Hi Ladies
Feel compelled to get on to a site as honestly can't stand the weight gain. don't feel in control of anything brain all mooshy, mood swings, emotional, shouting at my children for no reason. Seriously considering not taking it. Been on it for 2 yrs and in the big scheme of things it would increase my percentage of re-occurrence by 1% is it worth it? My husband said at the time that, in time that would be a year... I have a 3yr old (she was 1 when dx).

Oh dear, I have become obsessed with my weight Ive even taken up running.

Has anyone does anyone is anyone putting on weight?
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Elinda,
Thanks for your message! It sounds as though you struggled with tamoxifen in the same ways as me. Fatigue, brain fog, alcohol is a no-no, hangover feeling, all-out crap feeling really! I don't think I can go on for another 4.5 years like this or worse 😞

My pain when rolling on the floor was a really severe pelvic cramp that lasted a few hours. I've since been spotting so am attributing it to a sort-of period. I do get reflux and heartburn from time to time and gaviscon helps; but the other more worrying pain feels like it is inside my right rib cage, rather than my shoulder joint, it is much worse when I have a drink and is worse when I'm lying down. feels like something is inside and causing my ribs to push out and my back to click a lot. I have had it for five months and it isn't getting any better. Add that to the intractable, debilitating fatigue and I'm treads to give up. I am frightened there is something seriously wrong, but all I get from my BCN and usual GP and the breast surgeon is "side effects", "you've been through a lot so bound to be tired, give yourself a break", and "come back when you turn yellow if you think it's your liver".

I saw a different GP today and he did more bloods; he is sending me for a liver and gallbladder ultrasound as the pain in my back/shoulder isn't muscular or skeletal in his opinion so might be referred from upper abdomen. I forgot to mention the spotting (actually, I thought it had stopped) but will say something to the sonographer in case it is relevant. If all those tests come back clear he said he'll refer me to a gastro doc at the hospital. My grandfather died from bowel cancer so I've always been worried about that, even before bc, even though I would be remarkably young (33) to have it. I also used to drink way too much so worry about my liver now that I'm on tamoxifen which can take its toll. I have had enough though. Whatever it is, I just can't carry on 😞

Thanks again ladies,
Lisa xx
elinda45
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Lisa

Have to reply to this one.

I was on tamoxifen for 2.5 years and felt completely dreadful on it all that time. I kept getting told that my recovery from the treatment was slow and that might be the best I'd ever feel - wrong! About a month after coming off tamoxifen I felt like a different person entirely. I'm now on AIs as I became menopausal. I had a 6 month period where the tamoxifen was leaving my body and the AIs were building up and during that time I felt great. Unfortunately, now I'm having terrible side effects on the AIs!

Back to tamoxifen - crashing tiredness and fatigue almost every day and terrible brain 'fog' and memory loss.

Alcohol - I have barely touched since I finished treatment at the end of 2009. I can't tolerate it any more as it makes me feel ill and I get drunk on half a shandy. And yes, one glass of wine is enough to give me a hangover. All liver function tests (blood tests) are normal.

When you say you were rolling around on the floor, where was the pain? It sounds like you may possibly be suffering from acid reflux which I've had since finishing chemo. When it's bad I get terrible pain between the shoulder blades, discomfort in the tummy and pain in the stomach area - also feel shivery. Most days I get a kind of empty, gnawing feeling in my stomach. If it is that, then yes, a glass of wine could well set it off as that's very acidic adn that's another reason I don't touch it. My Mum has acid reflux and gets bad lower stomach pain with it. Treatment is usually drugs called proton pump inhibitors (omeprazole, or lansoprazole for example).

Can you describe exactly what your symptoms are especially when you were rolling around on the floor?

Elinda xx

Rhianphil
Member

Re: Tamoxifen and feeling really, umm, not right??

Just wanted to add my experience with tamoxifen. I was first diagnosed over 15 years ago and was on tamoxifen for 8 years. In that time I became tea total as I had such bad hangovers after the smallest amount of alcohol. Once I came off it I was fine again. Unfortunately the cancer returned in the same place in2011 and I had a mastectomy. Am now on Letrozole and no side effects so far,
sarahlousie
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi lisa, Glad too hear that your not suffering with the hot flushes and night sweats at least thats one blessing for you. I'm on herceptin forever and tamoxifen for at least 5 years out of the two drugs the tamoxifen has been the worst for side effects with me personally. Of course we all react differently to these drugs and there is no ryhme or reason as to who gets what side effects. The weight gain is by far the worst for me not just because of body image but because of balance, I've fallen over about 6 times and landed with a thud very hard and thankfully someone else was with me to help me get up off the floor! I believe because I'm not used to being this big that I'm struggling to find my natural balance and one small trip makes me fall over. I was always about 8 and a half stone since starting tamoxifen in Sept 2011 Ive now balooned up to nearly 12 and a half stone. I've done 4 hours of yoga this week and last week walked over 10 miles across the coast path which was lovely BUT none of it is making any difference to the weight gain. My liver is enlarged but this could be left over side effects from the chemo, if you are experiencing any pain then keep going back to your Doctor they have to address it and at the very least give you some form of pain relief medication. I've a huge box of co-codamol and take one if I am experiencing any pain. sending you lots of love and light xxxx
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi sarahlouise,
I have out on a tonne of weight for the first time in my life too. Ok, not actually a tonne, although some days I wonder how I'll ever do up my jeans. I have buying ones with more 'give' and stretch 🙂 Since being on tamoxifen and mirtazapine I have out on about half a stone; at 9st 4 I am the heaviest I've ever been. Most of it is on my bum and thighs, with a bit of extra belly fat - I can squeeze rolls of it, and my belly isn't hard, it's squishy fat 😞 I had an eating disorder for years as a teenager; now I am just trying to accept that I am not overweight - yet - and have been through a lot. I'm not dieting, but eating more healthily and trying to exercise (difficult with the fatigue). I am 33, feel like 83 most of the time with a sore knee, tired dry eyes, headaches, mood swings, belly pains... Grr!
The reasons why I have been worrying about my liver, not least because tamoxifen can cause damage to it, are that I feel full in the upper right of my abdomen (which might norm nothing to worry about), have sporadic dull pain in the region, and I've had a lot pain in in my right shoulder blade area especially after even just a sniff of wine. My liver blood tests are all normal, so the GP isn't worried, but I don't like pain. It usually means there is something wrong. I was worried that my liver had become enlarged due to the tamoxifen and was so big it was taking up more space I inside my ribcage and squashing my insides - but I think that is very unlikely given that I've only been on it 6 months, and my blood work is fine! If you have had CT scans I'm sure anything sinister would have been picked up, notwithstanding the limit of detection of the scanners. But if you are concerned about your firm belly - I don't think it's ok for you to struggle to get up? - perhaps ask your GP to examine you and do some tests? He will probably want to know if does it go down overnight? Is it like fluid or fat? Is it better/worse after eating or sleeping? etc. I think sometimes we (certainly I) forget that there may be other, non-cancer causes for our symptoms. It's just so hard trying to work out what we need to worry about - I'm so grateful for all the responses and support in this site!
I must be one of the lucky ones, as I don't get hot flashes or night sweats from the tamoxifen. So assuming it's actually working that is one side effect I'm not - so far - suffering. I hope yours are bearable and don't affect your sleep too much.
What treatment are you on for your lung mets, just herceptin and tamoxifen or something else as well? My last chest CT showed no mets - yay!
Lisa xx
sarahlousie
Member

Re: Tamoxifen and feeling really, umm, not right??

also forget to mention that I suffer with wicked hot flushes and night sweats x
sarahlousie
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi all wanted to jump in on this thread about tamoxifen I've been on it since Sept 2011 and have noticed all the usual side effects including weight gain (nearly 3 stone first time Ive ever put on weight) and my onc has admitted to me that it is tamoxifen that is making me put on weight, very sore joints especially ankles and hands when I get up first thing in the morning I shuffle about for the first hour like I'm about 100 (actual age 45), now I've put on weight mainly around my middle but its not wobbly its very firm and was wondering about swollen liver (I've had CT scans and apart from some lung mets I don't have any further spread so why is the liver swollen I did do all the usual chemo/surgery/rads over 2 years ago and am continuing on a combo of herceptin and tamoxifen, am I right in thinking that you ladies are blaming tamoxifen for swollen liver, it would make sense to me if it did cause a swollen liver sometimes my abdomen is so uncomfortable and I stuggle to get up!!! Also I take a heap of supplements and have done from the start although I was told to avoid eating grapefruit and taking red clover whilst on tamoxifen. xxx
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi peacock,

Thanks for your reply. I have been getting the occasional toe cramp in the last few weeks but nothing horrendous. Glad to hear the magnesium is helping. I'm trying to drink more water to see if that helps.

I hadn't had a period since January, but (warning: TMI ahead!) I started bleeding today so I reckon that was the cause of my belly cramps at the weekend. I had hoped they were gone for 5 years...! Hopefully not a sign that the Tam isn't working, or worrying bleeding. I am seeung my GP next week, and also the breast team at Charing Cross, so I can quiz them then.

Helen, we do have similar journeys albeit for different reasons! It's nice to know I have a travelling companion 🙂 I hope neither of us need chemo again. I only did one FEC, and medically was (sort of) ok to continue, just not mentally or emotionally, but it is still there as an option should I need it. Pneumonitis sounds awful; have you or had you had other lung issues to deal with before bc? I have a recurrent pneumothorax but it's only small these days so breathing isn't too laboured/short, although a couple of days after chemo my lung collapsed again; walking to A&E from the station was hard work!

Fingers crossed, we could all do with some luck!

Lisa xx
HJU63
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Lisa,
the questions I was asked by the Onc registrar were about headaches, stomache pain, bladder problems, aching joints - pretty much the list you find on the leaflet in the Tam packet. Is it worth talking to your GP about all this? Also, I know some Oncs do actually say ok to taking supplements whilst on Tam (not mine) so perhaps there are things you can take to ease the SEs.
Our journies look a bit similar - I too was unable to complete chemo! I developed pneumonitis and breathing problems as a rare reaction to paclitaxel and so did 12 weeks (4 cycles) FEC and then just 5/12 weekly paclitaxel. If I should ever be unlucky enough to need chemo again I will not be able to have doxetaxol or paclitaxel apparently.
Hope you find a way to get some answers
Helen

peacock
Member

Re: Tamoxifen and feeling really, umm, not right??

The only problem I've had since starting tam last September is that I suffered leg cramps at night. I started on magnesium supplements which helped a lot so it's not a problem now.

No problems with alcohol unfortunately - I wish there was as I might lose some weight

lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Thanks Jo for the link to the Tam info. I will have a peek now.
Best wishes,
Lisa
lisa79
Member

Re: Tamoxifen and feeling really, umm, not right??

Hey Helen,

Thanks so much for your reply, it's good to know there is someone else out there on Tam and mirtazapine (I think I posted on your thread about mirt a few months back??). I'm sorry to hear you have dreadful hot flushes/sweats; it's one side effects I've not really had, fortunately. I hope yours settle down now you have passed the 6-month mark.

When you saw your onc what feelings/side effects did he question you about? I just got asked how I was doing on it (I said I was getting fat and had occasionally puffy ankles - at the time the rest of it wasn't as obvious!). I would be interested to know which of mine match what he said, just for some reassurance really. My BCN is a bit dismissive of effects and changes which might or might not be caused by treatment; if I suffered something that could be a side effect she would say it was even if it turned out to be something else. I thought I had a new lump once; over the phone she just said it was probably an enlarged lymph node from a cold - but I didn't have a cold for ages before.

I suppose what I'm worried about is disregarding symptoms as side effects when they are actually down to something else and need treatment.

Since my dx I have barely drunk much alcohol, just feel too gruesome the day after. But it really is so much worse since I've been on T these 6 months, I can't cope with feeling so lousy the day after a sniff of wine so I'm not really missing it! It makes me feel so much better that someone else can relate to the alcohol intolerance - may we both suffer in sobriety! Seriously though, I really was starting to think my liver was packing up for some unknown reason, so thanks for normalising and grounding me 🙂

I too need to make Tam work as am pre-meno and ER 8/8. Plus I didn't finish chemo so might have stray cells lurking...

Best wishes to you, and thanks again.
Lisa
HJU63
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Lisa,
sorry to hear you are feeling so rough. I am also on Tamoxifen and mirtazapine (Tam since Dec, Mirt since Feb). I don't have the same symptoms as you but today I had my 6 month Onc appointment and what you have described matches the questions the Dr asked me about being on Tamoxfen. So, ask BCN to get you in to see Onc to discuss Tamoxifen because I think thre is a good chance that some of what you are feeling is down to Tam.
I too find that I cannot tolerate alcohol well, if I have some wine it increases my night sweats and makes me feel rough the next day. So, I only have it on occasions.
For me the worst part of being on Tam is the extreme night sweats - really, really hot at about 4 am and hard to get back to sleep. But, I need to have hormone therapy and as no evidence that I am post-menopausal I will have to stick with Tam.
Hope you get some answers and solutions soon, Helen

Jo_BCC
Member

Re: Tamoxifen and feeling really, umm, not right??

Hi Lisa,

I have put for you below the link to BCC's publication regarding Tamoxifen, I hope you find it helpful. Also, our helpline team will be only too happy to talk to you about this, 0808 800 6000, calls are free.

http://www2.breastcancercare.org.uk/publications/treatment-side-effects/tamoxifen-bcc20

Take care,

Jo, Facilitator

lisa79
Member

Tamoxifen and feeling really, umm, not right??

Hi everyone,
I wondered if anyone else is in the same boat as me, or if I should badger my GP/BCN.
I've been on tamoxifen (and mirtazapine) since Christmas last year, and am three months out of rads. To be honest, I feel awful. No vomiting or tummy upset, mind, and not really nauseous or lost my appetite, but I'm really fatiguedlethargic, barely moved except between bed, bathroom and kitchen/living room today. My head feels a bit swimmy, disequilibrium I think rather than vertigo, and I had the most excruciating lower stomach ache/cramps this morning, swollen belly, 'stiff' bladder even though it was empty. OH was thinking about calling weekend doc, as I was rolling around crying for about half an hour.
I did have one small glass of wine with dinner last night. I have been finding recently that the even after 175ml of wine the next day I have a hangover from Hell, can't get out of bed before noon, and feel gruesome all day - does anyone else get that on tamoxifen? I'm panicking that I've got liver disease as I've been having really bad pain in my upper right back/shoulder blade consistently the morning after a drink. It isn't bone pain, doesn't show as anything wrong on chest X-ray or CT; a couple of weeks ago my GP did full blood work and said all was normal, despite a few other liver like symptoms in the digestive department. Is it possible the CT contrast since the the blood test has broken me? Or could this all be down to tamoxifen? Do you think I should ask my GP for an ultrasound? He thinks it's muscular but I don't agree. My spine has been clicking and making strange noises a lot since I started tamoxifen, almost like it's not straight - being pushed by a massive liver??!
I'm guess it's all side effects, and thus ok to feel cr*p, but I just wondered if anyone else feels this awful?
Thanks,
Lisa xx