Dear Natty,
That's such great news about the carboplatin. When I was diagnosed in 2012 the research was very new and although I asked for it, it wasn't yet part of the protocol. I had a partial response from the FEC protocol (three of four tumours gone) and of course I can't help wondering if I'd have achieved a complete response with a platinum added. Ah well. No point looking backwards in this situation. I'm sure at some point they'll come up with a cure and we'll all have had redundant treatment. I certainly hope so!
I'm mindful not to overwhelm you with information but it sounds like you're in the same frame of mind that I was - hungry for it. My other book recommendation would the 'The Reality Slap' by Russ Harris. It's not about cancer but about dealing with sudden shocking life events (so it IS about cancer). Russ writes about and teaches Acceptance Commitment Therapy which evolved from Cognitive Behavioural Therapy (but in my opinion is vastly superior). It's the best resource I've found for handling 'the head game'. It's not about staying positive, but about accepting and moving through all of the emotional experiences that come with our circumstances. What I liked best about it was that it doesn't pathologise emotions as 'good' or 'bad'. There's also an emphasis on being clear about what it is that you really value and making decisions on that basis. I found this particularly helpful when I was making major decisions about my treatment (such as whether or not I wanted reconstruction).
It's been my experience that there's a wide range of responses to diagnosis from 'just trust the doctor' to 'I want as much information as possible' and I'm definitley well over into the latter group. It sounds like you are too. There's also what I think of as the 'magical thinking' group; people that hold tight to something 'alternative' in spite of all the evidence. I think there's a huge role for complimentary treatment (yoga, meditation, massage, better diet etc) but I'm yet to be convinced that anything 'alternative' is a reliable cure.
What is interesting though is that many of the 'alternative' protocols have included fasting. The science on fasting is now compelling, particularly in light of recent research showing that many of those of us with triple negative breast cancer have a gene mutation that stops our body from cleaning up dead and damaged cells (autophagy). Recent research into fasting shows that it can trigger autophagy so I now follow the 5:2 diet. There's no research yet into whether fasting can overcome a genetic mutation that damages autophagy but as fasting also lowers insulin type growth factor (which is high in cancer patients) and it's a very effective way to lose weight, I figure it's good for me either way. There's also been some very interesting research into fasting during chemotherapy and the potential for this to reduce the toxicity and side effects to your body while still being effective against cancer. Worth a google and a conversation with your oncologist.
One final tip; watch your antioxidant level during chemotherapy. There's a natural tendency to want to eat really well and many people think about adding in a vitamin/antioxidant supplement or some kind of juice routine. Some forms of chemotherapy work by oxidising cancer, so any ANTI-oxidant works against that. Given the recent research into fasting it's just possible that the nausea and loss of appetite that some people experience (I didn't, so it's not compulsory!) might actually be part of what makes chemotherapy effective. I was half way through my chemotherapy before I realised that my excellent diet might actually be working against my treatment. It was an object lesson in discussing everything with my doctors.
I strongly support the advice from all the other women here about keeping your records together. I have a folder with plastic sleeves divided into various stages of treatment (chemo, surgery, radiaiton), a section for all of my pathology reports and test results (with all my films kept together in a big bag), and I've kept a running handwritten log at the front of that folder with each entry starting with a date followed by a brief description of either the treatment I received, the conversation I had with the doctor or the symptoms/side effects I observed.
I also kept a seperate clip board style folder for appointments. Mine has a cover with a pocket which was handy for referrals, business cards, print outs of maps or articles I wanted to discuss. On the note pad inside the folder I would write anything that occurred to me between medical visits so that when I saw my doctor I had a list to work through.
Take your time with your doctors to read through your notes and get your questions answered. They are all very busy and it's easy to feel rushed but the feedback from my doctors is that they appreciate a well informed patient that asks sensible questions. Sometimes I had to remind myself that my doctors were getting at least a couple of hundred dollars every time I saw them, so it was okay for me to sit in that chair until my questions were answered.
I hope all of this is helpful. As I said, I'm mindful that things can be very overwhelming at the start of treatment and not everyone is keen on having all the information that I came across. Please feel free to ignore anything that doesn't appeal to you. The message that comes across through this site time and time again is that, while we all have this disease in common, each of us travels our own path. On the days when mine seemed to steep or overwhelming I found this phrase really helpful; "This too shall pass" I also appreciated my husbands sense of humour; "At least your alive to complain about it!'
Love and hugs to you Natty. We're all here for you if you need us.
Meg
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