Hi everyone
I have stage 4 breast cancer,2 tumours (stage 2 and 3) in one breast and nodularity in other breast, suggesting cancer, secondaries in several chest/axillary nodes, ribs,spine and lungs.
I am presently on Tamoxifen and had first dose of Zoladex 3 weeks ago. No surgery/chemo/rad.
I am expected to start Denosumab too, but have been putting it off as I am really worried about the side effects.
I am struggling badly with fatigue and weak muscles, since 2 weeks after I had the Zoladex, unable to get up out of bed in the mornings and usually unable to eat anything before 11am (think this may be Tamoxifen, but made worse with Zoladex). If I do eat, I feel like I am going to vomit and end up retching.
My biggest concern is starting Denosumab, which can cause musculoskeletal pains, fatigue, diarrhoea, breathlessness, risk of serious infections and osteonecrosis (breakdown of bone in jaw).
My QoL is not good at the moment due to the side effects and not even sure it is working, as tumour has got slightly bigger and nodes above breast and in axilla are sore again. (They reduced in size the first month on Tamoxifen)
I cannot seem to find anything on the forums from people on Denosumab and how they have coped with any side effects.
The breast nurse just says she knows loads of people on it and they are fine! She is not having to live with the side effects, I am! I am wondering if it is all worth it. I have gone from doing up to 10 hour days in work despite having Chronic Fatigue Syndrome, to feeling rubbish after being up for a couple of hours and my lips/face going pale (which worries my family).
Sorry this is long, but anybody who could share their experience with me, I would really appreciate it.
Thank you.