Hello

Hi Carolyn,

Thanks so much for your reply.  It is good to hear from someone with similar experience.  

I am off all meds now.  I believe it would be a very bad thing to be on arimidex with functioning ovaries....

My onc put me on tamoxifen after I finished the 5 years of zoladex/arimidex because the research says that 10 years of tamoxifen is better than 5....you'd have to be joking!.  I couldnt tolerate the tamoxifen so stopped with my oncologist's blessing.  She thought quality of life was very important and acknowledged that I had really done a marathon with optimal trearment and that losing a little weight would probably be much more beneficial.  I have low CYP2D6 activity and hence was on arimidex/zoladex instead of tamoxifen, though none of the CYP2D6 concerns has been proven.

ANYWAY, just writing to this forum was cathartic and I began to forgive my poor little ovaries for causing a stink as, after all, it wasn't their fault that they have been obliterated for 7 years and are struggling to behave!!!!!!!  I am being impatient because I took 3 months leave from work to have a break and i am spending it lethargic and foggy.  But I am being a bit more positive as it is quite wonderful that the body is returning even if misfiriing a bit.  I took a small dose of guarana/gingko/ginseng today and felt really normal so may continue to if i dont find it is unwise.  I actually felt awake and can almost face my tax return!!  I actually cleaned the bathroom, walked the dog, walked me (my little dog's legs are too short to keep up on my walk), repotted the cherry tree, went shopping.  I read that research shows that gingko, Ritalin and prozac have helped chemo brain. They have shown brain PET changes.

It has forced me to eat better, take fish oils, antioxidants, Vit D, multivitamins, gentle exercise so that has to be a good thing.  I saw an endocrinologist who ran every test found nothing wrong with me....fantastic.

I look well and everyone I know thought I was "over" breast cancer 6 years.  They have not understood that the hormone stuff has knocked me around for 5 years..... so I feel a "whinger" for saying I dont feel great....and hormones are invisible so I must be great!

Thanks for your reply.  I lurked around the bcaus forums when i was first diagnosed.  They were a life saver.  It will probably be haunting to go back and see my profile.

I would have liked to have spoken to a survivor of 5 year hormone suppressor/blocker....ie me.

See you and best wishes,

Michelle

 

 

HI Michelle,

 

Congratulations on surviving 5 years on Zoladex/armidex.  What a marathon effort.!!

I was on zoladex / tamoxifen for 2years.  I know when I stopped i expected to feel heaps better as i had blamed most things on the zoladex.  I dont recall going backwards but things did not greatly improve when I was only taking tamoxifen.  However 6 months later I did start to feel that the fog had begun to lift.  I could actually remember number sequences and not totally blank out during a conversation.

So 12 months may seem a long time but you also had chemo (I did not) and 5 years of zoladex.  It must take a while for it all to come out of the body.

I did go to a naturopath as I was really fatigued and she said that i had very low levels of all my vitamin B's.  (That was 12 months into my treatment) I felt heaps better when the levels were back on track. I was only thinking recently that I no longer get that relly tired feeling anymore.

As far as periods are concerned- I had one in April this year (2 years after stopping zoladex)- all tests had shown I was menopausal. I turned 52 in April.  So it was a big shock to find that my ovaries were mucking up, and my lining was thickened (side effect from tamoxifen) . As I had started taking arimidex- I ended up having my ovaries out.  They wont bother me now.

Are you still taking arimidex??  If so- have you spoken to your oncologist about the periods?

 

Not sure if this blurb helps-it is frustrating not to feel "normal".  I am sure you will get there once all the chemicals have gone out of your system.

 

Best Wished

 

Carolyn

Hello,

I am making my first post and am unsure if the group still exists and if anyone is out there?!  If you are......

12 months ago I finished FIVE years of monthly zoladex with daily arimidex...so was post menopausal for 6 years with flatline no oestrogen.

You'd think I feel great with some oestrogen for the first time in 6 years but I feel dreadful with brain fog and lethargy much worse than during treatment.

I was 39 at the beginning of treatment and am now 45.  My periods have actually returned twice in the last 3 months.  It is obvious my hormones are oscillating and I often feel premenstrual, without a period happening at times.

I am thrilled, grateful, and relieved to be free of cancer at the moment but I actually feel dreadful with brain fog and lethargy.

I dont know anyone who has gone backwards through menopause to puberty and I hope someone has here.

Before the 5 years of zoldex/arimidex, I had a lumpectomy (2b IDC), axillary dissection (1 node +), chemo for 6 months, then radiotherapy and have had no recurrence.

Anyway, please let me know if anyone knows anyone who has gone through this.

Thanks

Michelle

 

Hi All,

Just thought I would do a quick update as I saw my Oncologist today.  It has been six months since my last Zoladex injection.  I had blood tests a couple of weeks ago and they are showing that I am still in a state of menopause.  My Oncologist explained that young ovaries fight to stay active, but as I was 48 when I started the treatment that they may have decided enough is enough.  I will see her again in 12 months and have another blood test.

My hot flushes have reduced since being off zoladex- but again this could be that my body has accepted menopause.  The biggest thing that I have noticed is--I can remember things/lists, and I dont lose my train of thought mid sentence.

Trust you are all well

Carolyn

HI Jo,

Yay last injection today. My oncologist will see me in six months- and she has given me a pathology slip to have blood tests prior to that appointment.  Mainly checking my hormone levels- and need to allow time for Zoladex to get out of my system.  My oncologist said I may get my periods again- athough I may not if my ovaries have decided to shut down permanently.  I am turing 50 this year- so we will wait and see.  I did ask whether there would be any other testing - but obviously not as this stage.  Three more years of tamoxifen.

I bought Krill oil tablets and I am finding that my joint stiffness has eased.

Nice to hear from you

C

Hi Caroline

Good to hear your onto your last injection next week. Do you know if and when you will be tested  after coming of Zoladex? My weight has rapidly been going up since being on tomoxifen. I am up to 10 kgs now since August. My specialist and GP both say it is the Tomoxifen and menopause it self.  They said just blame your hormones or lack off .   If the  Trill tablets are working for you I might look into taking them.

Take care, Cheers Jo xx

Thanks for your reply Carolyn. Yes I have gained weight beginning from my chemo up until now. I've lost some weight but the last few kilo's are being stubborn. Being on Zoladex puts you into a menopausal state therefor there will be weight gain; my doc said.

 

No i haven't experienced any lumps from the injections. The only problem i have  had was with the last injection, Something went wrong with the injection and it  did not put the implant thingy deep enough and gave me some strong pain in the area for 12 hours or so.  Dr said it was a problem with the needle ????? 

I live in Perth and the humidity has be so high lately it has really been a nightmare trying to cope with the sweats and flushes. "Bring on Winter"

Cheers Jo xx

Hi Jo, thanks for replying.

Yes I'm on both Zoladex & Tamoxifin. The hot flushes are the worst hey?! Esp during summer!! *kill me*. I've had the same symptoms as you; headaches, no sex drive etc. 

Have you experienced any fatty lumps in your belly where the Zoladex gets injected? I've found 2 small lumps where I have the Zoladex injected. My local GP said the past implants haven't gone away & they have fat encased around them. Naturally I'm freaking out about it.

Has either yourself or anyone else know about this?

 

Hi Smiley Ky,

I was on Zoladex for a number of years and the only side effect I really suffered was the hot flushes as it puts you into medical menopause.  Apart from that I didn't suffer anything.

Take care.

Tracey