Hi All
Not been well on and off for ages no enthusiasm no energy and very achy. I have been on tamoxifen for 7 months and symptoms are getting worse. I have horrendous hot flushes, woolly head and dreadful anxiety.
I E-mailed BC nurse today and asked about taking a break from tamoxifen and she said to try for a month! Has anybody else been in this position
Thankyou for listening
Kay x
Hi Kay,
I was on tamoxifen for only a month before I took a break. Apart from the irritating side effects (nausea, eczema, dry itchy scalp) which I could have lived with, I had an overwhelming lack of energy and no motivation to do anything. Before bc I was energetic and involved in lots of things and being slumped on the sofa did not feel like me at all. A week off tamoxifen and I was feeling alive again (oestrogen sure is powerful) and after discussing with my GP have decided to stop altogether. For me the benefit of tamoxifen was 3-4% improvement on my prognosis score (I had bilateral mastectomies) and I decided to live with the extra risk for the sake of having a life worth living. I know it would be a much harder decision if you still have a healthy breast. By taking a break you should be able to prove whether the symptoms are purely down to the drug and then have better info to make a decision. A short break from the drug is not going to affect a recurrence of bc as this is a long term treatment. I have heard that different brands of tamoxifen suit different people, so maybe that’s another option.
Hope you find the right solution for you.
Regards
Misha
Hi Kay,
I remember the symptoms very well! I felt that I had permanent pmt for a while when I first started taking tamoxifen and they did start to wear off eventually…either that or I just got so used to the symptoms I began to think they were normal but mine were bearable. The aches, especially my back, continued throughout taking tamoxifen and I was sent for a bone scan early on which was clear, and since finishing my 5 year course in July I feel like I did at the beginning of treatment (mood swings, aches etc.) but hoping this will wear off pretty quick.
I do know someone personally who had to stop taking it because of the side effects and was started on something else because she was post menapausal, im not so wouldn’t have been able to do that as far as I know. I didn’t think of stopping at the time, too scared I guess, but hormones are so powerful and affect people differently so I would be tempted just to keep with it a little bit longer as your bc nurse said, then if no improvement think again.
Rachel.
Hi Kayty,
I was very much like Misha except that I have a remaining breast and had lobular cancer so slightly increased risk of recurrance in the other side. Despite that Tamoxifen only gave me a 2.4% benefit, I took it for 12 days and gave up.
Not long I know but I had period pains, breakthrough bleeding, headaches, slightly blurred vision and just felt like a very old lady, no motivation etc.
In my case with my stats 1 in 40 women would benefit and not get a recurrance BUT 39 would be taking it for 5 years when they didn’t need to, 2 of whom would still get a recurrance.
Its very much a personal choice, I don’t like taking tablets anyway, have never had the pill or hrt and just have paracetamol / asprin for headaches.
All the best with your decision
M x
Thanks everyone for your help
I don’t know what to do but I feel better for talking about it.
Misha - the feeling of no motivation is so overwhelming and I want to feel better.
I have also had poorer vision, and funny ears (what am I like)
I will try and discuss this with BC nurse next week but I think she is fed up with me at the min!!
Love to all
Kay x
I don’t know if it helps, but I have been on Tamoxifen a year last July.
My first courses where horrendous, I was so poorly, I could have just crawled in a corner and stayed there. I went to see ‘a’ GP, not my own, you can never get to see your own doc unless you wait months, so this lady GP asked me to change brands a give Nolvadex-D ago, it’s none generic.
It took about two weeks, but the difference was …well…unbelievable really. I’m still having a few probs with on and off periods (I’m 55 tomorrow) but other than that, I feel absolutely great.
Linda x
Hi ladies, I am at rock bottom at the moment after a month of tamoxifen. I’ve had a history of depression for 15 years, since my son was born, but the last week has been awful. I have been on prozac on and off for 10 years, and am taking now but this is a different sort of depression. Physically I feel very well, after mast, chemo and rads finishing in July, but perhaps it’s all hitting me at last. I have a number of family problems at the moment too, as my brother died suddenly just before I got cancer and I’m trying to keep my 81 year old mother going. I’m going to go to a support group this week so I suppose that’s a start. It’s interesting what you say about switching brands, as I have just started a new pack today and it’s different, but it’s not the Nolvadex one. Hot flushes not really a problem but sleepless nights since I started them and terrible anxiety. Sorry to offload on you all, but I really feel like not taking the tabs at all at the moment.
Liz x
Dear Liz
I am sorry to read that you are feeling so low, I am posting with information about a couple of Breast Cancer Care’s support services that might be of interest to you as they can offer help and support via the telephone in addition to the support you have here.
The first is Breast Cancer Care’s telephone support group. It’s a chance to get together once a week to talk with people who’ve been there. Linked together by phone in comfortable surroundings, you can express your feelings and discuss the practical and emotional impact of living with breast cancer. The groups will be particularly useful for you if you feel isolated. The groups are completely free (we pay for the phone calls) and as long as you have access to a phone and have a quiet private place from which to call, you can join us from anywhere in the UK.
There is also Breast Cancer Care’s peer support service. The telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding.
For more information about these and our other support services available to you, please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm).
I hope this helps you Liz
Best wishes
Lucy
liz I took myself off Tamoxifen, as I felt so cr~~PY . My Onc was slightly un impressed, but is so lovely. He understood why I came off it, but as HER2 pos and Oestrogen pos, now post menopausal as ovaries removed 9 months ago, he suggested Femara. Have been on this for over a week, seems better for me. Only 3 herceptins left to go.
I also suffer with depression, for about 12 years now can relate to what you are feeling. I am sorry about your brother…loosing a sibling is very hard. My sister died in July this year after nearly 4 years of fighting Bowel cancer. she was my best friend as well as big sister. I miss her so much.
i think we just have to carry on withwhat we are told is best for our individual cases.
take care
becks
Hi all,
This is my first post but had to send it after finding this thread about stopping tamoxifen.
I was diagnosed in July 07 with stage 3, had 5 months of chemo to try & shrink what turned out to be 2 tumours, mastectomy on left side with removal of all lymph glands where cancer was found in 12/22 nodes, & then radiotherapy which finished in March. They also found signs of the cancer in one vertebrae & a few ribs but no pain there. Although I wasn’t able to work during this period, I felt & kept really well (allowing for tiredness etc - no sickness thanks to seabands - can’t recommend highly enough) & consider myself lucky as I have no kids to worry about & was paid from work for a long time so had no real financial worries. Sailed through !!!
Initially I was put on tamoxifen but had what I thought at the time were bad hot flushes so changed to Nolvadex-D on advice of nurse but gradually they got worse & worse & worse. Tried to go back to work in Aug having been off over a year and managed to do 4 hours a day for just 2 days a week. This lasted for only 5 weeks & I couldn’t cope, although it took me ages to admit this. Like you kayty it was the hot sweats, woolly head, anxiety plus feelings of claustrophobia, unable to cope with the slightest pressure or in crowds & very snappy & irritable - I really hated myself & felt I was being a real wimp.
Ended up at in tears for an hour with my BCN who said these could well be caused by the tamoxifen coupled with me putting pressure on myself to go back to work too soon. She spoke to the surgeon before I saw him for my check-up the following week so I didn’t have to get upset all over again telling him. He was so understanding, told me not to go to work (I’m signed off til Dec now & that may not be long enough apparently…), did some tests & recommended to my onc that I change from tamoxifen. This was agreed by her - apparently I’m at a funny age, 43 & part of me is showing as pre-menopausal & part as post due to the chemo tipping me over that way - so I have been started on Arimidex & Zoladex. Only been on the new stuff for 10 days but I do seem slightly better so fingers crossed !! Admittedly, some of the improvement may be due to not being at work but the nurse did say a lot of women have found improvement by being on this other combination.
I’m just so glad I spoke to the nurse (Carol Brearley at Lancaster if there is anyone else round here & the surgeon & oncologist have also been great) so I know my strong side effects are normal & other stuff can be tried - she’s brill !
Hope this helps some of you out there.
Liz
Hi
Been on tamoxifen for 1 year
had a few side effects but none i couldnt cope with.
But now things have changed
5 weeks ago got an ache down my right side ,the pulling ache was also in my back [on the right side] I went to the doctors, they took a sample of my
urine, and said i had a bladder infection,whch they put me on antibiotics ,They helped, abit ,but didnt get rid of the ache,
Well this week the doctor sent me for a scan on my kidneys liver and bladder,Today my result came back normal Since i had the scan 3days ago ive been
getting a pinky discharge from my womb, DO you think it could be the Tamoxifen.Should i stop takeing it?
] IM seeing the doc again on Monday .Love jxxxx
Hi girls
Thanks for all your comments
I spoke to BC nurse and she advised to come off tamoxifen and they will consider putting ovaries to sleep!
I have not taken it for a week now and anxiety seems a little better so I am awaiting their decision
This bl*****ming disease is so different for us all and I am so grateful for your support x
fruitcake - try not to panic and talk to doc on mon. stress and hormones have a lot to answer for. thinking about you
Best wishes
Kay x
Hi kay,
I have not taken Tamoxifen for 2 nights now, pain a lot better, But will see what the doc says on monday
Thanks for your care
love June
Hi all, decided to stop tablets after a month, have been off them a week and I am sleeping better and a lot less anxious. My bn will talk to oncologist tomorrow about blood test to see if I am pre-menopausal, peri or post, then decided on a course of action. I asked about my percentage benefits too as don’t know. Thanks lizcat for your informative response, I’m a similar age to you, 41.
Best wishes to all
Liz x
HI,ALL,
Just to keep you all up with my latest events {It might help others]////////////////////////////////
Spoke to my doctor on Monday,she said she would make me an appointment to go to the gynaecology clinic
at the Hospital, At 3pm same day ,appointments manager phoned from the hospital with a appoinment for
next week.On Thursday afternoon [shall keep you posted with results]
Take care
June
Good luck ! I will keep my eye on this post with interest.
I may have spoken too soon about the Arimidex & Zoladex as I have started to feel as I did on tamoxifen but not as bad yet.I’m at the oncologist’s again this Thurs as well to discuss the new medication. Did read somewhere (no idea where - chemo brain !) that it takes 2 weeks for the Zoladex to switch off the ovaries & bring on the menopausal symptoms & guess what, it’s now 2 weeks since the first injection…Hopefully it won’t get any worse & may stabilise & get better ! Failing all else I think the surgeon did mutter something about removal of ovaries but I was a bit young - lovely man !!
Take care all, Liz
Hi, well it’s the arimidex for me now after my bcn had a chat with onc on my behalf. Will start it next week…I must give it a fair chance even though on other threads it sounds like the joint pain could be a problem. Liz- I loved it at Vine House, I had along chat with a wonderful lady and then ended up in a support group for an hour as it just happened to coincide. We all talked about the lovely side effects of the tamoxifen! Looking forward to a relaxation group and on a wiating list for other things. June- hope all went well with you.
Liz x
Hi all,
I have been having a tamoxifen ‘holiday’ for a month now after takin it for just over 1 year. The exhaustion and joint pains were becoming unbearable for me and I couldn’t face another 4 years feeling as if I was an old lady! (I’M 40). My BC nurse suggested the break when i told her how i was feeling. Although the joint pains are still bad I can honestly say I feel as if i’ve finally woken up from a deep sleep-i’m alert all day-even at work!!! My mood has also changed dramatically-I no longer want to kill everyone!!! Ive had blood tests to determine whether i am pre or post menopausal so that we can decide which drug to put me on now-i’m oestrogen receptor positive-so must take something to stop it taking over again!
I’ve recently had quite a few appts with my gynae too and she says that if I want an oopherectomy then she will do it no worries-however my BC doesn’t like the idea unless it’s a last resort for some reason.
hope this helps!!
Take care everyone
Love Tracy xx
Hi all
Reporting in ,
Went to the hospital today, Had a scan and more tests, Was given a nice cup of tea ,while i waited for my results
They are going to have me in for the day to remove a Poli: from my womb.This is a side effect from Tamoxifan,
So i do feel a lot better now that ive found out [, why i was bleeding]
Oh and by the way the doctor said that i must keep taking the Tamoxifan
Take june xxxx