Hi Ladies, just wanted to say hello to everyone as this is the first time that I have ever posted on a forum! I was diagnosed with secondary breast cancer in my liver in May. I was only treatment free for about a year. How can it come back so soon . The first treatment for my cancer this year was going great. Most of the time I forgot I was poorly.But unfortunately my scan told a different story, as one tumour was shrinking and the other was inflamed. I am now on my first week of taking Capecitabine. At the moment I just feel like I have zero energy and no appetite. Just wondered if anyone else has felt like this and will I start feeling better soon?
Hi Liz
Welcome to the forums. You have found the best place for learning from people’s experiences, a brilliant nurses’ phone line and lots of support from friendly members. There is a dedicated section for secondary breast cancer with additional services like online group chats and webinars so it might be good to apply for admission to that as well (it’s a closed group). Since you’ve posted in Talk to a Moderator, I’m sure they’ll give you clear instructions what to do.
I’m mid-cycle 10 of Cape. It’s my first line treatment, started in April after diagnosis in March. It’s a double whammy - not only secondary (in my eye socket and skin) but triple negative - and like you, I had maybe a year’s respite. Sometimes you have to wonder how fate can be so unkind!
On to Cape. I have to admit I had a rough 4 cycles where I felt a bit like a zombie. I even pleaded for a blood transfusion lol. BUT I can get side effects just walking past the pharmacy lol. And don’t expect to suddenly feeling ok on the ‘week off’ which is actually when the drug is at its peak. You get a few days respite towards the end of the week! My dose was reduced from 3000mg to the next down, 2700mg, and that helped. It’s essential to report the slightest side effect so, when you see your oncologist, don’t downplay your tiredness (utter exhaustion at times?). By cycle 5 I could feel my body adapting and now, apart from fatigue, I have no side effects to speak of. Meantime it has had remarkable effects on my blood and tumour markers which is about all we can go by as CT scans don’t pick up skin mets or my tumour (too near the surface apparently). MRI showed a small reduction in my tumour but, as my oncologist said, you can only expect small reductions in small tumours. So far, so good.
I’m sorry I can’t be more encouraging but I have joined a couple of SBC Facebook groups and some women there have adapted much faster to Cape, so don’t assume you’ll be flattened for good! I wish you all the best,
Jan xx
Dear @lizg70 , I hope you are doing ok today.
I moved your post to this new board about secondary breast cancer as it is more likely that people will see it, and be able to share their experiences.
If you ever wish to speak to our team of breast care nurses, please don’t hesitate to call us on freephone 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm).
Sending our love
Bernard