Trial Drug

Hi @lgray3911 , my oncologist and I gave the Neratinib a go in early October. I lasted a week on it, I went from being well, healthy and happy to feeling like crap after only 4 days on the drug. I was nauseated, couldn't eat was going to the bathroom up to 8 times a day and generally felt unwell. Chemo was a breeze compared to how this drug made me feel. Not only did I have to take 6 tablets each day I also had to take gastro stop meds 2 tabs 3 times a day and then there was a weekly blood test to monitor if the drug was damaging my liver and I was also back seeing my Oncologist weekly. I basically went from feeling like a non cancer patient and having some semblance of normality back to my life after 15 months of treatment to feeling like I was back on the treatment mouse wheel. I know like me you coped relatively well with your treatment and were fairly lucky with the side effects but for 5% this drug was definitely not worth the grief for me. I was still unwell for another 2 weeks after I stopped taking the drug, even breaking out in a rash. My oncologist said it was worth a try but was just an added insurance, she is happy with the treatment I have already had. If I had tolerated the drug great, but it wasn't a necessary part of my treatment. I appreciate that my Oncologist was able to get the normally 2k / month for me for free as throwing that sort of money down the drain ( literally ) to feel that bad would've really given me the shits!