Hi Loulou
I’m so sorry capecitabine hasn’t worked for you. I’m in a kind of limbo with it - my MRI shows a small progression in my tumour and I can feel it in my skin mets, but my markers remain very low, so cape is containing it or slowing it down, but not curing it. Well, I never expected the latter - the first thing I read about secondary BC is it’s incurable. That was the NHS site. Talk about boosting morale! My oncologist wants to keep me on it for as long as possible, while I look and feel well (who gave him that impression? I’m flattened by fatigue and , if it weren’t for Buscopan, I’d turn the bathroom into a bedroom!) because triple negative options are more limited.
I think, if you are totally honest with yourself, you knew that cape wouldn’t work forever and we move from treatment to treatment at this stage, aiming for maintenance since we’re denied a cure. We hope we’ll be the lucky ones (I’ve read posts from someone who’s been on it for years, but I’ve also met people who only managed two cycles) but it’s so unpredictable. Am I right that you’re triple negative, like me? Paclitaxel will be my next line of treatment too. I had 9 weekly sessions for my primary treatment. It didn’t work then so why would it work now? My oncologist said it was likely I would metabolise it differently and it has a good success rate. I’m leaving it till I have to discuss it and consider any alternatives.
I attended a BCN support group yesterday and was talking to someone who’s just had her 15th paclitaxel. I was amazed at how animated she was, how well she looked and how practical she’s being about the whole thing. She thinks paclitaxel is a gentle treatment. I say this because, first time round, I was a zombie! It’s an IV treatment, usually once a week. You do lose your hair and there is a risk of peripheral neuropathy. Apart from that, the side effects seem to be the standard ones. However, it has a good success rate at reducing tumours and spread of effing cells.
I’m sorry to say that our lives from now on will be dependent on chemotherapy and it’s a matter of finding the right one. If you’re TN, it’s really guesswork as they have to keep it contained. The new TN drug, Trodelvy, can be used as a third-line treatment and there are different targeted treatments as well as immunotherapy IF you have the right markers/mutations or whatever. BCN is running a virtual webinar on Understanding Trials in April, if you’re interested. You do have to reserve a spot though. If you’re not TN, there’s a much wider range of options. One of the members of yesterday’s group has ben living with it for 12 years.
I guess it’s a matter of accepting that our lives are not going to be as we hoped. But that doesn’t mean we give up. I’m not going to talk about thinking positively and standing up to cancer - I think that’s all rubbish. We have to listen to our bodies and go with the flow. You’ve taken a huge blow and felt unsupported because your husband wasn’t there. But there’s no time to waste at this stage - you need to be moved on quickly to the next treatment to ensure there’s no further progression, and hopefully find tumours/lesions/whatever shrink to nothing. That’s why your team did what they did. It’s not that they are inhumane. It’s that they are focused n getting you onto a treatment that stops this progression. However, it’s hardly surprising you feel so down. Do you have a Maggie’s Centre anywhere reachable? They provide a wonderfully soothing environment and there’s always someone trained who you can just chat to. I’ve found that very useful. I also find the nurses on this number above very supportive and helpful.
I can’t say I feel the same this time round. I’ve somehow become quite phlegmatic. I don’t want to know how much longer I’ve got, I don’t want any prognoses, I’m just going with the flow. But deep deep down there is a well of anger at the unfairness of it all. I remember when I was told I couldn’t have children, there was a book called Why Us? This title feels so right for me, and my husband who is way more anxious, right now. It’s just not fair. To think that when I started mt blog on Boxing Day 2018, I defiantly called it ‘It’s only a disease’. Hmm. Now, it’s a way of life! But we can’t change it. I’ve been advised to live well. I’m still waiting to find out what that means. Meantime, I’ll stick with my days under the duvet, my bland diet and accept there are good days and bad days.
Sending you a huge virtual hug and a recommendation that you invest in a Dreamland Intelliheat blanket. I melt into the comfort of it. Best gift I ever received.
Take care and don’t give up. That low feeling will pass. Sorry this is a ramble- blame the chemo!
Jan xx