Finished Zoladex

Hi, I finished my last zoladex mid October after 2 yrs on it (diagnosed March 05 age 31). I just wanted to share my experiences and wondered if anyone could help me with a few points. Since finishing, what a remarkable difference I have noted, for me the main one being is I am sleeping all night, I am still not used to going to bed at night, sleeping and then waking up with the alarm in the morning !! During the whole zoladex period i had dreadful night sweats, flushes, you name it I had it, now I am maybe having the tiniest of flushes through the day, which obviously I would put down to tamoxifen, but totally bearable, unlike before on zoladex. Also its like I have a new mane of hair ! People keep commenting on my hair saying how lovely it is lookin, but its basically back to a lush, thick head of hair, whilst on zoladex I had a terrible dried out hair. Another totally plus is no joint pain !!! I was plagued with joint pain through this period, and had 2 bone scans throughout my 2 yr period with zoladex, as the pain in my back was horrendous. Every morning when i would awake and get out of bed, was just a nightmare on top of the back pain, then there was the pain in my ankles and legs !!! So to now be able to get out of bed in the morning after a full nights refreshing sleep is fantastic. And after 2 years of having zero moisture down below I still cannot believe that things down there seem to have returned to normal !!! Ok so this all sounds great doesnt it, but there are a few downsides to it, I am suffering from the most horrendous mood swings, bursting into tears for the slightest of things, being very irate and irritable which I am aware is obviously the whole hormone thing, which isnt fair on my hubby or almost 4 yr old son, but my question is and I hope someone can perhaps advise me, when do things settle down ? and also when could I expect / hope to have my period back ?
I am due to see my onc. end of January to discuss the next step. She wanted me to have a few months of my body getting back to normal until she discussed what we were to do next, the thing is I am so enjoying my body being back to normal that the thought of anything else fills me with dread !!! I would just love to hear anyone elses advice on the matter.
Thanks, Lorri x

Hi just wanted to bring this to the top again, was hoping to hear of others experiences who have finished their zoladex treatment !

Hi Lorri
I suppose there are some good points to finishing Zoladex, but some downsides too.

I am not finished yet, I have another 14 months to go, and then who knows???

I don’t feel as if I am suffering too much.
I did have some joint pain to start with but that seems to have calmed down, so have the sweats too.
It would be interesting to know how others have been when they have come off zoladex.

Take care

Angie
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Hi Angie thanks for replying. Yes there are positives for finishing it as i noted above but since the weekend i have been in agony with what i can only describe as period pains, and feeling really unwell. Just want to lie down - not easy when i have an active 3 yr old and husband working away at the moment. Don’t know if it is connected will wait a few more days and see how it goes, but it certainly does remind me of how i used to feel around my period although 50 times worse !!! I did read something that it can take up to 6 months to a year for periods to return, so i would love to hear of others experiences re: their periods. ( I finished end of October.)
Glad to hear you are not suffering too much with the zoladex, long may it continue !!
Lorri xx

Hello Lorri,
I’m sorry I can’t help you out with the info you are looking for because I’m still on the Zoladex myself. I came on the forum to ask if anyone’s side effects improved when they finished Zoladex but you have answered that in your original message. I finish my Zoladex this coming August, sweats have been really bad and I only sleep a couple of hours a night since I started 18 months or so ago.
I am to be on Tamoxifen for 5 years and Zoladex for 2.
I wasn’t sure how much of the side effects were down to each of them because I started them both at the same time, were you on both at the same time? I’ve noticed there doesn’t seem to be a great number of people on here who are on Zoladex.
I hope things continue to improve for you.
Anne

Is there anyone else who was on Zoladex and Tamoxifen at the same time and noticed an improvement after the Zoladex was finished?

Hi Anne

I must say since finishing zoladex end of October and although I am still on tamoxifen, there have been vast improvements. I/e No night sweats, full nights sleep, minor flushes through the day some days none at all, but totally bearable, I put them down to tamoxifen, but I must say I am feeling back to almost normal !!! the beginning of January was not good for me as I had the onset of my first period since December 2005, so felt really ill. I must say I have felt fine since and although i have felt cramp like twinges again the past few days and been a bit up and down, nothing like i was last month. At the end of up with zoladex i felt awful severe joint pain, hair very frizzy, generally felt like an old woman not a 33 yr old !! My only problem now is i have a meeting with the oncologist in may to discuss ovary removal which would put me in a permanent menopause - this i dont want, so alot to think about !!!
take care, Lorri xx

I am on Tamoxifen and was on Zoladex for several months but decided to stop taking it last month as it was making my depression worse and I was having suicidal thoughts. Much better now I’m off it. Also had hot flushes and don’t get them anymore (yay!! No more tops strewn all over the house where I ripped them off during a hot flush – anyone??).

Joint pain still terrible though – can’t have it all, I suppose! :slight_smile:

Jacki x

Thanks Lorri and Jacki,
it seems by what you say that the sweats caused by the Zoladex are much worse than those caused by the Tamoxifen or possibly a result of taking both at the same time. Anyway I’m looking forward to the end of Zoladex hopefully in August but that decision will be made then by the surgeon, not the oncologist. Don’t know why that is but that’s what the oncologist told me.
PS I haven’t suffered from joint pain at all in 18 months of being on it. At work I am continually walking around but whether that has anything to do with it I wouldn’t know.

Anne