Highlighted
Member
Posts: 2
Registered: ‎10-07-2017

Re: Tamoxifen

Claudie I actually feel like I have just read about myself, I actually think the tamoxifen is driving me crazy and now after reading your post will definitely be making an appointment with my GP and oncologist.
I feel so low most of the time and constantly think I am unwell again which I just can't cope with, it's all driving me crazy and feel like I'm driving everyone away from me. Thank you for your detailed post.
Community Champion
Posts: 7,547
Registered: ‎29-05-2015

Re: Tamoxifen

Hi Carla ,welcome to the forum .May be better to ask your question in the hormone therapy section of the forum - this is a very quiet part of the site .All the best with your treatment .Jill x
https://forum.breastcancercare.org.uk/t5/Hormone-therapy/bd-p/4438

Member
Posts: 1
Registered: ‎04-09-2018

Re: Tamoxifen

Hi,

I am 33 and started taking tamoxifen two weeks ago, it seems like as soon as i started taking it i started getting a headache and now have weird lower back pain.

Is this a side effect, i was at my oncologist and he said headaches is not really a side effect.

Thanks

Member
Posts: 1
Registered: ‎16-01-2018

Re: Tamoxifen

[ Edited ]

Thank you for sharing your story.  I am a stage 1 breast cancer survivor.  My mastectomy was in Dec. 2013.I have been on Tamoxifen for 4 years now, and the side effects have been steadily increasing.  My oncologist also recommended anti-depressants, but I am very wary of getting started on yet another drug.  right now I am seriously considering going off Tamox 1 year early, as my moods/emotions/weight/sense of well-being has been drastically affected this winter.  I am nervous to go off early, but really want my life back. any advice?

Member
Posts: 2
Registered: ‎03-10-2017

Re: Tamoxifen

I've been on maca since before my breast cancer diagnosis and maybe that's why I feel fine not sure?? Now I'm wondering if maca is safe to take since it seems like it works the opposite of tomoxofen? The box label says consult with dr if you're on tomoxofen
Member
Posts: 2
Registered: ‎03-10-2017

Re: Tamoxifen

Diagnosed with breast cancer three years ago this month at the age of 44, had a mastectomy on left breast and watching the other. Three different doctors from Three different institutions told me My cancer was 99.9% estrogen and progesterone positive and I was on progesterone and testosterone at the time and immediately got off and have been on tamoxifen ever since. I have never experienced any of the side effects I've read about. I still have regular periods, no hot flashes and who knows about mood swings since those who know me say I've always been cray cray lol.
My oncologist says im their poster child I say I'll take it for as long as I feel good while I'm on it. Good luck to those of you with the horrid side effects. I would probably get off if I was experiencing those things.
Member
Posts: 8
Registered: ‎13-03-2017

Re: Tamoxifen

Caffeine triggers it for me buts it's better now 5 years of tamoxifen
Member
Posts: 8
Registered: ‎20-01-2016

Re: Tamoxifen

Hi Jane, i have been looking all over the internet for advice on Maca when taking Tamoxifen and so pleased i came across your post.

I was diagnosed a year ago with IDC which was ER+ and been on tamoxifen, as a result i seem to have lost my va va voom.

Are you still  taking Maca, and is it still helping you?

I have ordered the capsules which should be here today so i am hoping they are going to help me.

Any advice would be great.

 

Gail x

Member
Posts: 55
Registered: ‎09-06-2014

Re: Tamoxifen

[ Edited ]

Claudie:  Just nosing back at old threads I'd been involved in. So interesting to read your journey on Tamoxifen. It's very good you had a supportive medical team. I've had no support form the GP practice, I haven't been able to see an oncologist for 2 years and haven't seen any consultant for follow up for 18 months. The system here in Shropshire is appalling. If you can't make 2 appointment times, you're out. They've signed me off from outpatients 2 1/2 years post diagnosis. Very sad. I'm not sure any of them have actually twigged I'm not on Tamoxifen anymore? I'm still happy with my decision and wouldn't change it. Hope you're still good.

Member
Posts: 31
Registered: ‎05-11-2014

Re: Tamoxifen

I have also found coffee. Alcohol are big triggers in hot sweats. If i get too hot i lye down for a bit x
Member
Posts: 31
Registered: ‎05-11-2014

imRe: Tamoxifen

hi 46,  and was not in menopause but guess i am now, they said tke tabs at night to sleep through symptons but i kept forgetting, so i take in morning, to start with they are quite extremem, you do get used to them, i am still hot fromt he radiotherapy 3 months ago and have put on 2 stone (i did give up smoking too), and find i am hotter all the time, hoping to get ome weight off and may feel better, get quite tired and down, due to the circumstances i think, but have counselling at our local fountain centre and that really helps, i also did research into energy boosting foods and tired them in my diet, mcmillan do a book on fatigue and it says try not to sleep during day, which i must admit helps, i rest rather than sleep, as i feel worse when i wake.

 

hope that helps x

tracey

Member
Posts: 7
Registered: ‎15-04-2014

Re: Tamoxifen

[ Edited ]
Hello,

I would like to describe my tamoxifen journey and I think this tread is as relevant as any others.

Background info:
- diagnosed in August 2013, age 37 year old, with grade 3, ER+, Her2+ on right breast
- surgeries: lumpectomy in August 2013, mastectomy + reconstruction in October 2013
- initial treatment: FEC-T (6 cycles) + 18 cycles of herceptin

I started my hormonal treatment 3 weeks after the last cycle of taxol with 20mg of tamoxifen daily (March 2014). As most people have described it before, I had a lot of side effects (physical and mental) and I carried on hoping they would settle down. However after 6 weeks, I was a complete mess (very tensed, crying for no reason, not feeling sad but not enjoying life etc...) and my oncologist gave me a 3 weeks break from tamoxifen. We also discussed counselling, CBT and anti-depressants. At that point, I refused the anti-depressants as I thought if I really had a problem with my cancer diagnosis, I wanted to deal with it rather than hide the problem behind some drugs.

So I booked myself for counselling and met a fantastic person. At that point, I had been off tamoxifen for a few weeks and like someone mentioned before, it was like someone had flicked the switch and I was back to feeling normal. The first few sessions of counselling were very useful as it really looked like I was naturally using all the appropriate mechanisms to respond to the challenges of life. Half way through counselling, my oncologist suggested to restart tamoxifen by taking a lower dosage (5mg instead of 20mg - after all, 20mg is one size of medication fits all and I am only 1.60m and 50kg). Straight away, I felt the side effects coming back and I went to my last counselling session in such a mess that the counsellor booked me for a few more sessions. The counsellor experienced first hand what I had been describing and agreed that my mood swings seems chemically induced.

I kept a log of all my side effects and the mood I was in depending on the brand of tamoxifen used, the tamoxifen dosage and the time of the day I was taking it (I tried 3 different brands, cut the pills in half and spread the intake between morning and evening, then evening only hoping the side effects will be unnoticed during my sleep). That was very useful information to show to my oncologist to discuss the mental side effects I was experiencing.

By August 2014, I was still struggling and decided to stop taking tamoxifen for our 2 weeks holiday. Once again, I felt better immediately and was able to enjoy being with my family.

In September 2014, I had a review with my oncologist and we agreed that my mood swings were chemically induced and I should try to take some antidepressants to rebalance the mental side effects induced by tamoxifen. Initially, I started on 75mg venlafaxine and still 5mg of tamoxifen daily. Within a month, the side effects of the venlafaxine had settled down and I was confortably living with 5mg of tamoxifen. My GP then suggested to increase the tamoxifen to 10mg; it was fine for a few weeks but soon I started struggling again and my GP doubled the amount of venlafaxine (150mg). Once again, it seems to do the trick and it was suggested to increase the tamoxifen to 15mg. Therefore I increased the dosage, without telling my husband, and after 10 days he asked me if I had changed something as he felt I was on the edge again... My GP suggested to increase venlafaxine again to 225mg but I refused - even if I was "coping" with life on the mixture "tamoxifen + venlafaxine", I was not really happy and increasing venlafaxine even more scared me (and my husband).

At that point, the oncologist suggested to try a different anti-depressant called citalopram and I switch from one to the other over a 4 weeks period. The switch was not nice but not as bad as it had been described to me. Unfortunately, citalopram did not work for me; it completely removed all my feelings and I was just a robot doing daily actions without positive or negative moods. So, I swapped back to venlafaxine and felt more settled.

In the mean time, my periods were steadily back (within 1 year of last chemo) and my oncolgist saw it as an alarm bell! As I was struggling with tamoxifen, it was suggested to replace it with monthly Zoladex injections and Letrazole. My husband and I were so happy when we left the hospital - NO MORE tamoxifen. However, I was going to stay on a low level of venlafaxine as I was very likely to still experience some side effects.

By February 2015 (after 11 months of struggling with tamoxifen), I started my new hormonal regimen: monthly Zoladex injections + daily Letrazole + daily 75mg of venlafaxine. For me, this new treatment is like the difference between day and night; I feel so much better and even the children said they have their mum back! But don't get me wrong, I hate the Zoladex injections; it feels like being stabbed and I cried with pain after the first one. Apparently, the slimmer you are, the more painful the injection is. Now, I take some ibuprofen before and after the injections and it is manageable.

When looking back at my 11 months on tamoxifen, I do question the point in being alive with such an horrible quality of life. I am very pleased by the support received from my oncology team and my GP; they did not give up on me and we finally found an hormonal treatment that is adequate (periods stopped straight away after the first Zoladex injection and I feel generally happy with life).

I wanted to write my story on this site as I would have loved to read a similar story when I was struggling. Too many people assume that if you are feeling down, it is because you are down and having trouble dealing with your cancer! Also, I did not want to increase my chances of the cancer coming back by stopping tamoxifen, I had reached the point where quality of life had to be more important!
Member
Posts: 29
Registered: ‎20-10-2014

Re: Tamoxifen

They said three weeks post chemo I would commence tamoxifen. That's when they allso said I was having more surgery. It doesn't seem a long time
Member
Posts: 55
Registered: ‎09-06-2014

Re: Tamoxifen

Would you maybe be able to have a time gap before you start Tamoxifen? I think we are so vulnerable when we start it, straight as treatment is finishing, it's so hard to cope. Maybe if we were allowed to feel stronger first, we would cope better with whatever Tamoxifen throws at us?
Member
Posts: 29
Registered: ‎20-10-2014

Re: Tamoxifen

Hi everyone I'm 33 and just counting down to my last 3 taxols. I'm awaiting more surgery, continuing on herceptin and commencing tamoxifen. I'm dreading it. I'm worried about weight gain. Dreading hot flashes- although the steroids give me a flushed feeling for 48hours post chemo and am dreading the low mood. I have been in a fog/ chemo brain for a while now and it scares me. I'm very fragile and having panic attacks. God knows what I will be like on tamoxifen?
Member
Posts: 55
Registered: ‎09-06-2014

Re: Tamoxifen

I was 39 at diagnosis. Two grade 3 lumps in left breast, mastectomy (no recon), FEC100 x 6 chemo, 15 x rads. I'd been taking Tamoxifen for nearly 10 months. Had horrendous hot flushes to start with but they settled after about 6 months. Main problems for me was black, black moods, low self esteem, everything was just foggy. I felt like everything was such an effort, like wading through treacle. Struggling to do my consults at work, anxious, couldn't cope. Typically everyone around me putting this down to what I'd been through, I must be depressed, I must take anti- depressants etc but I didn't want to go down that route. I truly felt suicidal, I was just so bone-tired, exhausted. I wanted to just curl up and sleep and never wake up. I was advised to stop taking Tamoxifen after I was diagnosed with a ovarian cyst, I was to have a two week Tamoxifen holiday.
Well.
The difference was breathtaking. It was like someone flipped a switch. I could feel my mood lighten, everything seems less foggy, less of an effort. The blackness of everything started to lift, I felt like I was coping better at work. That was after 2 weeks.
I've made the decision not to go back on it, I've weighed up the choices. I cannot carry on feeling like that. I feel strangely relieved now I've made the decision.
I'm now awaiting an exploratory laparotomy on my ovarian cyst and hoping they are right and it's nothing more sinister.
Just my experience to add to the mix!
Member
Posts: 4
Registered: ‎05-04-2014

Re: Tamoxifen

Hi

I'm 34 and started tamoxifen 4 months ago. I too have been suffering with terrible hot flushes day and night. My bcn recommended maca powder as a supplement taken daily. I also checked with my oncologist if this was ok as it has the effect of balancing your hormones. I wouldn't be without this powder now...my hot flushes are now manageable- less frequent and less severe. They still wake me up at night but don't cause as much disruption as they did.

I also asked my pharmacist to supply me with the same brand of Tamoxifen each month to reduce the effects of the different coatings of the tablets...I chose Wockhardt as consensus on the forums was that this brand causes the least problems. I feel quite lucky that I don't have the upset stomach, painful joints or itchy skin that others on this drug seem to have.

Jane xx
Member
Posts: 118
Registered: ‎19-10-2013

Re: Tamoxifen

Hi kiki

I think your low self esteem is probably linked to the treatment rather than the tamoxifen. I have met lots of people along the way who have felt down and tearful when treatment ends. I was very depressed for a while and found a 'where now' course which really helped put everything in perspective. Be kind to yourself and ask for help, I would look to see if there's a macmillan centre at your hospital they offer counselling and complimentary therapy.

Good luck I hope you feel more like your old self soon. X
Member
Posts: 13
Registered: ‎05-12-2014

Re: Tamoxifen

Hi,

I'm new here!

I am 39 and have been on Tamoxifen for almost 2 months now. I have experienced feelings of severe low self esteem, but I'm not sure if that's me or the drug/hormones. I feel fat and ugly.

Anyone experienecing similar? I am being ferocious to my pooor supportive boyfriend!

 

help!

kiki

 

Lek
Member
Posts: 10
Registered: ‎23-10-2014

Re: Tamoxifen

I'm 44 .... been taking Tamoxifen since July. Night sweats and hot flushes were a constant for me initially but few months down line marginally less. Still a nightmare eapecially if wearing a wig!! Lol