Hi all. After chemo in August 2014 I was told I’d had a complete response to treatment- even my 3 spinal bone mets were no longer active. Today I was told my mets have “woken up” again. I’ve only been on tamoxifen and zometa for 5 months. I was really hoping I’d have longer stability than this. I know I should be grateful and things could be a lot worse. Just upset this treatment didn’t work (especially as I’m 8/8 on the oestrogen receptor scale!) l just hope the ovarian suppression and denosumab works. Has anyone else had experience of this? Thank you, Lisa.
Hi Lisa
I’m sorry to read you’re having a a pretty tough time at the moment. Whilst you are waiting for the other users to reply with their experiences do give the BCC helpline a call on 0808 800 6000. Here you can talk through how you are feeling with a member of staff on the helpline who will offer you a listening ear as well as emotional support and practical information. Lines are open weekdays 9 to 5pm and Saturday 10 to 2pm.
Best wishes Sam, BCC Facilitator
Hi Lisa, hard I know, but try not to feel too disappointed, we all seem to have at least one hormonal we don’t get very long with. With me it was Aromasin, it didn’t work, at all. This was back in 2006, for my bone mets. Since then various other treatments have worked, some really well. Take Care. X
Thanks Belinda. It’s so great how you keep us all positive through the tough times. You’re truly a forum angel! Very best wishes x
Hi Lisa, I was diagnosed with bone secondaries two years ago and was put on tamoxifen and denusonab. After a six month scan I was switched to other treatment as the tamoxifen appeared to have stopped working. I was really upset as I was tolerating it well physically so my daily life wasn’t affected much. (It was affected mentally though as you will completely understand). It also makes you worry the next treatment isn’t going to work. However, since then I have been on anastrozole, zoladex and denusonab and I had a stable scan result last week ( whoopee!!) after another 16 months…long may it continue. I had my ovaries removed last month so have now stopped zoladex. I hope this helps. X
Belinda, thank you too from me for all your encouraging knowledgable posts…they have really helped me over the last couple of years. I tend to dip in and out of here but visit often for reassurance around my scan times X
Neither Tamoxifen or Letrozole worked for me. Tumour markers went up and aches and tiredness were difficult to cope with. Now on Capecitabine and much happier. Tumour markers down and SEs easier to live with. Fortunately there are plenty of possible treatments!
Kazza- A really helpful post, thank you. Like you, I was just gutted tamoxifen didn’t work as I was tolerating it really well. I had few side effects and it finally felt as though I’d got my life back. This disease comes and kicks you just as you’re picking yourself up again, doesn’t it? I’d also like my ovaries removed (I’m 33) but got a bit of a push back from my onc. I’d rather have this than a chemically induced menopause to be honest!
Thanks again Belinda’s for your input.
Elily- It’s comforting to know there’s lots of things they can try. Glad you’ve finally found something that works for you xx
Hi, I was on tamoxifen for nearly 5 years until bone mets were diagnosed. I am on Anastrazole now, since May last year, but recent blood tests indicate it has stopped working for me. I’m having a CT scan tomorrow. Its so reassuring to hear from those of you who have had similar experiences and found another treatment succesful. I heard having a chronic illness described as being like living in a game of snakes of ladders, I thought that just sums it up, I feel like a ladder has been kicked from under me. Here’s hoping there are plenty more ladders for us all xx
Hi all. Just as an update I have now been put on anastrozole and zoladex. I have also been switched from zometa to denosumab. Feeling more positive about things now. I think the registrar who broke the news that tamoxifen “wasn’t working” did it in a bit of a harsh way- she painted a pretty bleak picture! I saw the head oncologist this time who said there was nothing to worry about and I’d only had MODEST deterioration. I hadn’t had any further spread, tamoxifen just wasn’t working as well as he’d like. It just shows- the doctor you see makes all the difference! Love and hugs to all of you amazing ladies! x
I had my review after the scan and it was really good news, the cancer is not progressing so I’m staying on anastrazole and denosumab. I asked how come the antigens/cancer marks are continuing to rise, and Dr said that it could be because the cancer is being broken down so releasing antigens! I like that theory! He said the antigens not that reliable, just an indicator, whereas the ct scan is conclusive. Some hospitals don’t even measure the antigens because they are a “dodgy” test.
I hope this helps anyone else in a similar situation. I feel so relieved. I agree that the way the information is delivered makes a big difference.
Happy Easter!
Hi Debra I am sorry to read that you are so worried, please call our helpliners today as they will be able to talk things through with you and offer you lots of support, lines are open 9-5 today on 0808 800 6000
Weekdays 9-5 and Sat 10-2
Take care
Lucy BCC