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[jobeckett]

Hi Ladies,

It's been a while since I've posted, during which time I've had more specialists prod and poke me than I've had rainy days this Summer!

I wanted to see if anyone could give me some advice.  In short, I started peri-menopause symptoms 5 years ago and they ranged from insomnia to chronic feelings of dysphoria - in particular the most awful anxiety I've ever experienced and I just wanted to give up and die. 

My GP referred me to Nick Panay at Queen Charlottes and after a 7 month wait, I was put on estradiol 2mg, Utrogestan 100mg and testogel 0.5mg daily.  After 3 months I dropped down to 1mg estradiol as it felt too much (sore breasts, bleeding again) and continued on that regime until I was invited for a routine mammogram (for the over 50's) to then discover I had calcification which was pre-cancerous (& subsequently core biopsied out of my left breast).  I then had a womb scan to discover a benign cyst on my left ovary.

BTW - the HRT helped a bit but not in the way I read some women benefit from taking it.  I am also on a number of other meds (for Hypertension, anxiety, insomnia, depression) which means it's difficult to assess what helps and what makes me feel 'out of synch'.  Out of interest to anyone out there on Pregabalin, I took this instead of an anti-depressant for GAD but after 2 years on 150mg per day, I lost 60-70% of my cognitive function and felt very very low.  I decided to wean myself off this drug and on telling my GP, she said that it was a very good idea as it's just been now been proven to bring on early onset dementia!! For me it was total poison, for some it works.

After discussing this prognosis of LCIS (lobular carcinoma in situ) with my breast surgeon (have had cysts removed before) and also Mr Panay, the proffered options were to remain on my HRT regime but to think about coming off within the year (ie: now) and to swap to either Duavive or forget HRT altogether and take Tamoxifen.  I have been HRT free for a week after a rather rapid wean down, and the flushing has started up and I don't feel as 'bright' as I did on full dose but it's only been a week - things could get worse or balance out - who knows?!

So my concerns are a) taking Duavive (which is designed for progesterone intolerant women who don't have a uterus) - I still have all my bits  and studies on Duavive say that if taken with a uterus then the chance of endometrial cancer is much higher.  I guess this is Panay's call (& he's indicated that it would be okay for me to take).  Or b) taking Tamoxifen as I've heard terrible side effects, particularly anxiety and try to manage without any HRT at all. 

If anyone has had or is experiencing anything similar I'd be grateful to hear what routes you took or how you feel on either Duavive or Tamoxifen?  It has also been suggested by the ovarian cyst specialist that i have my ovaries removed, along with my uterus if I wish to.  My GP says not to have any surgery unless it's really necessary and I think I'll get thrown into full blown menopause if I do!

Reaching mid-age is such fun! 

Jo xx

[CLKD]

Tamoxifen almost killed me and it was the cause of the womb cancer that my friend died from.  Why do they suggest it, there is another drug available.

Unless you have heavy bleeding I would not go for hysterectomy at this stage. 

[Tempest]

Goodness, Jo! What a journey you're on!

Thank you for sharing your personal experiences of Pregabalin, by the way - your GP sounds very tuned in and sensible.

Here's an idea - although I know you're already taking something for depression and anxiety. Could you consider Tamoxifen and Venlafaxine? Venlafaxine has been shown in trials to be as effective as low dose estrogen for flushes, and is favoured on many of the breast cancer forums. A second option would be Citalopram - but this isn't as effective for flushes. The dose of Venlafaxine for flushes is actually pretty low - 37.5 - 75mg, so the side effects upon start up are minimal.

I'm trialling Venlafaxine (after a couple of false starts) at the moment,  and I'm 3 plus years into surgical menopause, no hrt.

We have another lovely member here who is also in surgical menopause and a breast cancer survivor who is taking an aromatase inhibitor, and who is finding benefit. from Venlafaxine too. It is also one of the few SSRI's that is safe to take with Tamoxifen (as is the Citalopram - Jennifer Saunders actually takes it to help her menopause symptoms and to ease Tamoxifen side effects).

I hope this gives you something else to think about - I'm sending you so many well wishes! xxxx

[jobeckett]

Thank you for your thoughts and suggestions CLKD and Tempest,

I am on an anti-depressant at the moment (started it at the same time as HRT) - Paroxetine (sorry, forgot to mention that in my previous post).  I've tried Venlafaxine and Citalopram - Venlafaxine nearly killed me and Citalopram didn't have much effect.  I'm terrified of taking Tamoxifen due to the side effects, hence the suggestion by Nick Panay to take Duavive (which is a blend of premarin for the HRT symptoms & conjugated bazedoxifene acetate to block any estrogen cancer receptors) - very new to this country but has been available in USA and Europe for a few years.  Still unproven I believe but specialists are prescribing it.  It's all very confusing - my brain can hardly take all of this information in and make sense of it!

CLKD - interesting to hear (sadly of course) that your friend died of womb cancer due to Tamoxifen - that leads me to think that perhaps Duavive might be an option despite the higher risk of womb cancer.  May I ask what it made you feel like when you say it nearly killed you?  Was it the anxiety did it just make you feel completely out of whack?

Thanks again ladies
Jo xx

[CLKD]

Sorry I didn't see this 

when I began tamoxifen in June 1995 after breast surgery within 36 hours I felt as though I had the 'flu.  Aches.  Hot.  Cold.  Shivery.  The drug made me really ill, after 4 months I stopped taking it.



After I left Hospital my sense of smell became acute.  There was a cooked Dundee cake in a tin with the lid on; in the pantry with the door closed.  Every time I walked by the pantry I could smell the tablespoon of cold water that was in the mixture.  When food was cooking even if I was out of the house, because I knew what it was, I could smell it [i.e. pork chops was the worst  ].  I went off most foods.  I felt constantly nauseous.  So after 3 months I stopped.  Then tried again .........