Struggling with Tamoxifen side effects

ChristineIkon

Hi All ,

My name is Christine, I have been on Tamoxifen now for 2 years and have always struggled with the side effects of Tamoxifen...I get them all!

I have had 1 breast removed after being diagnosed for a second time with breast cancer 2 years ago.The first time 10 years ago I underwent radiotherapy ... I'm 48 yrs old.

I am struggling with:

• Hot flushes
• Aching legs
• Struggle to keep weight off no matter how much exercise i do
• moodiness
• loss of libido
• fuzzy headaches
• generally changed me to feeling crap daily
• Interrupted sleeping patterns
• Constantly going to toilet

I have spoken to my doctor who suggested anti-depressants which helps with the hot flushes but i am reluctant to take them due to other side effects.

I have suggested stopping Tamoxifen to my doctor who advised it would reduce my life span by 2-3%.

I have a friend in a similar position as mine and she stopped them with no issues to date (8 years) and is urging me to stop.

Does anyone suggest alternatives or make comment if stopping Tamoxifen is irresponsible?

Any help or suggestions are much appreciated. It is really affecting my life, my personality, my thinking and made me a completey different person .. I was once strong physically, mentally and spiritually ......its also affecting my husband..anything he can take?..lol

Christine xx

Nur2014

I'm having my first oncologist appointment on 17 Jan. I was told that most likely I have to take Tamoxifen. I am not keen because of the rare but increased risk of womb cancer is a known side effect of taking tamoxifen and a high chance of bringing in menopause. But I feel I have no other choice.

There seem to be better drug Estriol and Frenretinide but compare to Tamoxifen they are very new and not being use for breast cancer hormonal therapy.

I wish I have the choice to take them instead!!!!

Tamoxifen seem to be better for those who already had their menopause?

SOME INFORMATION ON FENRENTINIDE AND SIDE EFFECTS OF TAMOXIFEN BOTH IN THE SHORT AND LONG RUN.

 http://clincancerres.aacrjournals.org/content/9/5/1877

 Cyclin D1 Overexpression Sensitizes Breast Cancer Cells to Fenretinide 

and on Tamoxifen side effect   http://all-natural.com/tamox.html

Robyn W

I am sorry to hear that Tamoxifen is affecting you this way.What a struggle for you.I took my first Tamoxifen tablet last night!.Of course I'm hoping that I won't suffer with bad side effects.Are you officially in menopause yet?I am,so after 2 years,I will be switching to an Aromatase Inhibitor,to try and lessen the Tamoxifen side effects.Perhaps this would be an option,if you are in menopause?I worry about putting on weight also.I am a bit of an exercise nut,so I hope that I won't have this problem.I suppose too Christine,that after 2 years you are pretty worn down by all these side effects.I am sorry that I can't be of more help,and I can only hope that other ladies with similar experience might have some suggestions for you.Sending you a big cyber hug!!! xoxo Robyn

Nur2014

Thanks for replying.

I'm still pre menopause.

xoxo

mona63

Sorry having a difficult time--only suggestions ive got

i work on my atitude as i feel that might impact--im  going to make this medication work for me; and the other one is regular injections so dont want that 

exercise every day if possible

take in  am with food

effexor is helpful with some s/effects 

best wishes

ChristineIkon

Thanks for everyones response , and yes I do feel worn out .

 

I am in pre-menapause . Im just after some natural alternatives and what peoples thoughts on not taking Tamoxifen.

 

keeping my spirits up is the key and i exercise daily hwoever it does get difficult when everything aches.

 

bets wishes to all xxx

xxooo

pinklady71

I had to go off tarmoxifen,after being on the drug from a week,I was shivering cold non stop , headache, dizziness,no energy , dry mouth ,peeing lots
like I had COVID .went to BRICC and heard from the oncologist and he told me to go off it .The side affects have now stopped since going off the drg

pinklady71

What drug will they put me on now as tarmoxifen was too much of a shock to my system .iam 54 old

Esjay

Hello @pinklady71..I share your pain...tamoxifen is an awful drug! Especially when they expect you to be on it long term. 

Has the Oncologist recommended a smaller dose for you as an option? 

I'm 10 years younger than you but I did four months at 20 mg and that ended up shutting my brain down , then I tried 10 mg for four months and that ended in a hysterectomy. The Dr then told me to go off it but within weeks I had a local recurrence on the chest wall and needed two more surgeries plus radiation..so now I've started on what is called Baby Tam (which is 10mg every 2nd day) about 6 weeks ago and apart from fatigue I'm getting on well. 

Trust it continues. The Oncologist has said I can have short breaks from it when it builds up too much. I don't have much option but to continue with it though.. kind of between a rock & a hard place.

pinklady71

No not yet iam seeing the oncologist in march, I won’t be taking tarmoxifen, iam still not ok

pinklady71

I feel like I have covid

Esjay

I'm sorry to hear that @ pinklady71.
 Glad you are seeing the oncologist again soon. You may need to get your iron, zinc and Vitamin D levels checked if you still are feeling unwell. I was very low in iron & vitamin D and I felt so much better once I started on supplements.  A naturopath or a GP can help you get your basic health levels sorted and that definitely helps your body to heal faster. After all our bodies and minds have been through, it's not surprising that we need some extra nutritional support.
Hope you can feel better soon!

iserbrown

Sounds like you need to visit your GP for full bloods to determine your levels and understand if you are depleted.  My bloods determined underactive thyroid. 

If you feel like you've got COVID perhaps do a RAT test!  I do a RAT a couple of times a week so I can visit my sister.  She is Immuno compromised and I need to protect her.  It's in the community.  My SIL has just come down with it, not sure where she picked it up from!

As to Tamoxifen I  took it for 2 years, then changed to other Aromatose Inhibitors and then back to Tamoxifen  -   9+ years all up!

Best wishes 

pinklady71

I had a gastric bypass so I have a lot of trouble with vitamins, I had a iron transfusion 3 days ago,vitamin d is low 

pinklady71

Did a covid test, it was negative my symptoms of tarmoxifen are gone after stopping 24 /48 hours

Arn_007

Hi @ChristineIkon,

I've taken Tamoxifen for the last 18 months.  I'm a similar age.

I've got all those symptoms.  Most have reduced substantially in the last six months but the fatigue is still terrible and the mood swings are still bad. That may be menopause not Tamoxifen, though.

2-3% difference in outcome is tricky because what's the error on that figure anyway?  +/- 0.5%?  +/-0.005%?  I don't know...  I think error bars should be in those Predict numbers but that's another thread.

I'm persevering with Tamoxifen due to sheer stubbornness, playing the numbers and the bone benefits.

My cousin in the uk, who is undiagnosed bipolar, stopped taking Tamoxifen as she said it was sending her crazy.  She is now on an aspirin trial.

Wrt anti-depressants, I take a somewhat expensive anti depressant called vortioxetine.  There is evidence that it can help with menopause symptoms.  So it may be worth suggesting to your GP.  I don't think it's doing much for me and am considering stopping it -  but I've been on it for 5+ years so there are all sorts of other factors at play for me.

If you do end up on an anti depressant, you can take a (nother expensive) genetic test to make sure that the one you are taking is metabolized by your body in an effective way.  Something else to think about...

❤️