I have had four and a half cycles of vinorelbine and my CT scan last week showed still not progression to major organs but slight worsening of tumours in my neck and chest wall (slight worsening is on top of significant progression on last scan in December). I had a long talk with my oncologist on the phone on Thursday and will see her on Tuesday. Both she and I agree that the vinorelbine probably worked for the first three cycles but is now failing (the thing with tumours you can see and feel and which cause lymphoedema is that you can easily monitor them clinically).
So I have used all the standard treatments for triple negative breast cancer (AC, taxotere, xeloda, vinorelbine, carboplatin, gemcitibine, taxol and vinorelbine a second time.) The drugs which are available on trial or in other countries which could be used include avastin, sutent, abraxane, ixempra…none of which have good trial results particularly in heavily treated cancers. I could try pegylated doxuribycin, a version of the C in AC which failed spectacularly at primary stage for me. I could go seeking a PARP trial at the Marsden but have decided its not for me (Phase 1 trials are about testing dosage and side effects and have tiny statistical chance of significant success…if I were younger or had children I might go for one.)
Instead I have decided that I want to take well time as far as I can now. If I continue on chemotherapy, continuing to experience severe fatigue half the time, then when I get further spread I will be too ill to enjoy the time I have left. So I see the coming time as a ‘window of opportunity’ to take some holidays, get on with my ‘to do’ list.
The spread of my cancer has been unusual…an aggressive cancer has turned out to be ‘indolent’ and bought me more time than I dared to hope for 5 and a half years ago. I know that fairly soon my lymphoedema arm will get heavier, that eventually I may lose use of it, that the deferred pain I get in my back and the twinges from tumours will get worse, so then I’ll go for the ‘management’ route. I hope my half strength voice, damaged by tumours, won’t get any worse…as has been promised…
I am in many ways wary of posting all this because when I started to explore it on another thread recently I felt I was criticised. Hope is so often equated only with the search for more treatments, but I think sometimes hope has to be reframed and looked for in different ways…which is what I am doing…hoping for management of my symptoms, hope that my major organs stay free of cancer for as long as possible, hope that the regional tumours don’t fungate yet, hope they don’t yet squash my lungs, hope I can have a good summer, so many hopes. I don’t play ‘guess the time I have left’ game with my oncologist…she doesn’t know and neither do I. Always it could be within six months or more or less…for each of us with mets. I believe for myself that the decision I am taking gives me the chance of the best quality time I can get.
My partner is with me on this and we both feel relieved. Sadly I didn’t get scan results until after my chemo on Thursday (they had got lost between radiologist and oncologist) so I am having one (last) exhausted chemo weekend. If in future I get bone mets or brain mets I will take treatments for them, but I think my chemo days are over…
Jane