Intolerance to all hormone treatments - what next?!

Hi ladies,

 

I was diagnosed August 2015, aged 45 and went through surgeries, chemo and radio. I was placed onto monthly Zoladex injections and Exemestane tablets. After 5 months, I was taken off Exemestane as it turned me into a raving lunatic - very, very short tempered.  I was then placed on Letrozole, which made me worse. The pain in my body was horrible. In Feb I was given a break off everything including the injections.  I felt amazing and even started running and cycling again. I’ve been on Tamoxifen for a month and have started to feel so depressed that I’m struggling to get out of bed in the morning.

I was told by my Onc that the Tamoxifen was the last chance for me, and that there was nothing else for me after that.

I’m now close to coming off everything, Has anyone else been unable to tolerate everything? What did you do? What are my options?

 

Em x

Hi Emma,

I’m so sorry to hear you’ve experienced all these side effects. Whilst you wait for other users to share their experiences, you might find it helpful to post your query on our Ask the Nurse board or call our helpline on 0808 800 6000.

Best wishes,

Bonita

Hi Emma_S,

I am so sorry to read your story - what a struggle it must be for you. I am not quite in the same situation as you, but still wanted to say ‘Hi’.

With the relevant Letrozole and Tamoxifen - have you been able to try them from different manufacturers? There does appear to be some evidence out there, that although the same active ingredient - the formulation around it can be different from manufacturer to manufacturer. I can vouch for that, that as when on Letrozole I was given a different brand for a month - I became very depressed and had severe joint pains - going back onto my previous brand - they dissappeared…

I am now on a break and will start on Tamoxifen in a weeks time, as I developed severe arthralgia in my shoulder joints on Letrozole, which can sometimes be a ‘delayed’ side effect.

My other thought - being completely non medical -

May it be worth having a discussion with your oncologist or a specialist in the field of oncology and nutrition to discuss whether things may improve if you have a diet high in phytoestrogens? Yes, it is highly controversial as the general advice seems to be for ER+ ladies to keep their phytoestrogen intake relatively low. And as phytoestrogens mimic oestrogen it may be completely counter productive.

Just thinking, because of the way Tamoxifen works - it could - theoretically - perhaps help???

You actually sound the way I did, when I hit the early menopause in my early 40’s - and in those days HRT was heaven sent, as it helped me to become more ‘balanced’ again. So when I was diagnosed in January last year - I was very fearful, that I would turn back into a lunatic, lol. Especially with the double whammy of cold turkey on HRT and Letrozole before my op. Amazingly - it was not the case! It does appear that your body - over time - mittigates the effects of the menopause -

Perhaps it may be worth taking the Tamoxifen in the evening - again - some people say it helps a little. Then try different brands, too.

It may also be an idea to try and contact a local Macmillan centre and see whether you can get some counselling. Although depression/moodswings are connected to hormone withdrawal - there may be some stuff going on inside of you, which may go back to your diagnosis, treatments, etc. Especially as you were diagnosed at 45. 

I am now just over 6 months post my active treatment, still needing one more op in January to replace my implant - and I am still struggling with the physical consequences of my treatments. I sometimes still have quite dark days, am fed up with always being between a rock and a hard place with the treatments, frustrated with not being able to get the ‘old’ me or my old life back, having to accept that some things will simply never be the same again, frustrated with my body not functioning the way it did, feeling like a 90 year old in the mornings, when the joints ache…, getting badly depressed when developing arthralgia in my shoulder joints, because of the meds…

Like you - if the Tamoxifen does not do the trick and my shoulder joints improve…I will seriously have to consider to ditch hormone therapy, something I really do not want to do…

Huge hug

Sue xx

 

Hi Emma I am similar I did manage tamoxifen for a few years but with side effects and have now had to discontinue because of bulky uterus resulting from taking the tamoxifen. They then said I need to go on anastrozole for 5 to 10 years which I wasn’t keen on but said I would try…well after 12 days of awful side effects I discontinued and 8 weeks after stopping them I continue to have pain in hands and feet. I have decided now not to take anything but do my own research. There are lots of women who cannot tolerate them or decide not to take them two websites I have find helpful are marnieclark.com and canceractive.com. Have a look if you haven’t already they include lots of recent research and helpful suggestions regarding alternatives that you could try hope this helps and know you are not on your own x

Hi Emma, its such a hard journey for us all, no matter what stage we at on this journey.

 

I am on Tamoxifen and found side affects hard but one tip that helped a lot so far is having half the tablet morning and evening raher then one a day.

 

This seems to ease the side effects re flushes, coldness, moods.

 

I also have ready to use if needed the Ladycare Plus magnet which helps with all menopausal symptoms including stress, anxiety etc. Lots of women have fund this helps them.

 

If that does not work for me I am going to use what I did for menopause, Serenity Cream, a plant based natural low progesterine cream. It got me through all worst of symptoms and I know some fourm users find it helps them too. Research has shown ts fine to use with hormne recptive BC.

 

Personally I will, lile you, throw pills away if quality of life dreadful, but first will try ther startegies to help me cope.

 

I also found the NHS PREDICT tool online helpful. My oncologist uses it and we can too, it tells us what benefits the drug will give you for your diagnosis. So chance of cancer recurring on and off drugs.

 

I hope these help but mostly wanted to say totally understand your feelings, quality of life is far more important then length but thats my personal view, others who are younger or have children may feel differently as sure I would too.

 

Talk to breast nurse, call the help line, go to a support group, no matter what decisions you take there is a lot of support for you here and elsewhere.