@RedRosesPinkLilies I had a lot of side effects from the IV chemo, particularly on the first cycle. They reduced the dose to 80% after this one. I had dreadful constipation, nerve pain, nausea and some vomiting. Subsequent cycles weren't nearly as bad as the first and the last two after my surgery, although the same dose as the previous three, were very manageable in comparison. I lost all my hair after the second cycle. It's hard on the first cycle as you don't know what to expect, for instance, some people get diarrhoea and not constipation from the same drugs. I found the first two days after the infusion were fine, I didn't sleep much due to the steroids they gave me, but it the side effects kicked in on about day 4 and lasted about a week. I then had a week and a half to feel normal again - the infusions were 3 weeks apart. I found my taste was altered and nothing was appealing. It's best to just eat what you fancy, which wasn't much for me, so smooth things like soups are easier as you can eat more. I had jacket potatoes (just the inside) with grated cheese on these bad days.
You're given anti-sickness tablets to bring home when you go for your chemo and take these regardless, don't wait until you feel nauseous as it's hard to 'catch up' with it. Other things like laxatives I got from the GP - for constipation Laxido sachets are best and again, if you find you're affected, get ahead with them and take one the night before you go to the chemo unit and another that morning.
The idea of cycles of chemo after surgery is to 'mop up' any stray cancer cells.
I'm on a PARP inhibitor called Niraparib. I had some nausea and tiredness for the first few months on these but now I just get some tiredness if I overdo things and a sore mouth at times. I have a mouthwash from the GP which I use every night to keep it under control but when I get an ulcer, I increase the frequency of taking it. I still have constipation but have it under control now with daily lactulose which is a sugary liquid. I no longer have any nausea, in fact, I could eat all day! I have put on quite a bit of weight but some of that might also be my menopause as I'm in my late 50s. I still get very tired and have to sleep for an hour in the afternoon at least twice a week.
I was told I'd be on this maintenance for '2 or 3 years or maybe beyond'. It's unknown as it depends on my symptoms, my blood counts (it can cause these to drop) and whether it's working or not. I find it hard living with this uncertainty. I don't know whether I will stay on them beyond the two years, which will be September for me.
I am quite restricted as it's still chemo so my immune system is weakened. Much of this is self-imposed though, I have high anxiety and have been on daily beta blockers to help me since my troubles began. I am also single and am mindful that I don't have anyone to look after me full-time if I were to catch anything so this is a big factor. My people live a fairly normal life on maintenance chemo and can return to work. I'm retired but I wouldn't honestly feel well enough to work some days. Some people can go abroad but I understand insurance can be a problem. The other ladies will be able to help you with this.
I read far too much about my condition! My like to be informed so that I feel more in control and can ask the right questions. There is madness in this but I can't stop! I would say stick to Cancer Research and Macmillan, much of the information on other sites is out of date and you will scare yourself silly.
Oh and make sure you apply for free NHS prescriptions, you get a very simple form from the GP.
The biggest thing I wish I had known from the very start was to stand up for myself and not be afraid to be persistent about getting treatment and appointments. My diagnosis and treatment was in the pandemic and there were so many delays and always the reminder that 'we're in a pandemic don't you know' and I was made to feel grateful for being treated. Some of this attitude prevails now in the NHS as many of us here will know. I will never forget the degradation and feelings of defeat that I felt. I've realised now that being a bit of a 'nuisance' around getting things moving along is the only way forward. If I hadn't found my voice after my diagnosis, without being dramatic, I don't think I would be here now. I am the last person to assert myself and avoid confrontation at all costs but it's necessary. You'll be glad you did when you look back.
I hope the picture I've painted isn't too bleak - please ask away for anything and I'll help as best as I can.