Hi all
I have MBC with extensive mets all of which were stable apart from my liver. I was on methotrexate and cyclophosphamide. My oncologist was very surprised at the progression as I was feeling so well.
The next treatment offered was eribulin but I didn’t want to lose my hair again so carboplatin was offered. First cycle was ok except for leg pain which resolved. From then on things have nosedived. Diarrhoea, nausea, loss of appetite, breathlessness, fast heartbeat and profound fatigue.
My team have done 2 ECGs a chest X-ray and a chest CT but nothing sinister came up!! My bloods were in the range too so I was able to go ahead with cycle 3.
I cannot bear the side effects any more as I have absolutely no quality of life. As I appear to be clinically ok the team are not keen just to stop.
any advice would be gratefully appreciated!
Hi Edelweiss
I’m interested to read of your experience as this is one of the alternatives I’m likely to be offered as my second line treatment and I’ve not seen much mention of carboplatin. I’m sorry you’re having bad side effects. I wanted to say that I was flattened by my first few cycles of capecitabine, I just stared into space with no inner resources to even help me do anything but get to the loo. My husband did everything. But I noticed my body was adapting to it by about cycle 4 and I slowly came back to life.
Has your oncologist mentioned a dose reduction? That made a huge difference to me on cape. It may be that they feel they need to halt the progression as quickly as they can. They are so focused on the cancer that they forget we are human beings but, to me, as few months of poor quality of life is a small price to pay if the treatment works - and there’s no sickness. BUT that presupposes the side effects will ease! Have you talked about it with your BC nurse?
I suspect cape has come to the end of its efficacy after 15 cycles as there is a small progression in my tumour and skin mets but my oncologist wants me to stay on it while I look and feel (???) so well (I can’t walk further than the end of my street without sitting for a rest). Being triple negative, there are fewer treatments available and he doesn’t want to use them up too soon (nicely put!). If you’re not TN, there should be several alternatives but you may have to sacrifice your hair. Hair v no quality of life. It’s not an easy choice. We all differ.
I hope you get more responses from people with practical experience. Meantime shovel down the anti-emetics, anti-diarrhoea so you can eat. I don’t have any remedy for the fatigue and breathlessness as I have those myself. I just accept that that’s how it is for me, no point fretting, but not everyone can afford that luxury of an unpaid househusband!
Take care
Jan xx
Yes carboplatin does have some unpleasant side effects for some of us. I am really not good for the first week after chemo but feel it is worth it as I am stronger each day then until zapped again. Is your problem for the whole six weeks between treatments? What lease do you have besides carboplatin?