Nerlynx

Hi @Kat09
Your experience is exactly what the Onco described.  Sorry to hear of your recurrence, hope you are managing well with the treatment.  Did you have a recurrence in the same or opposite breast.

Hi @Pascoe, I was given this medication after I finished 15 months of treatment for stage 3 grade 3 triple positive bc. I was lucky and my oncologist was able to get it for me on compassionate grounds. The Neranitib made me feel sicker than any of the other treatments i went through ( i was lucky and had very few side effects from both AC and taxol chemo's) I felt nauseated, the inside of my stomach constantly ached and I had gone from enjoying my life and getting better to feeling worse than I did when I had cancer. Each of us is different and responds differently to medications and treatments but knowing how this med made me feel there's no way I'd pay for it. I lasted 3 weeks on this med and have a pretty high tolerance threshold. Working also was extremely difficult especially when the waves of gastro hit, 8 gastro stop tabs a day didn't help much. I believe we all should try whatever possible to help stop a reocurrence but not at the expense of quality of life or financial strain. Sadly my cancer returned in March last year, do I think taking Neranitib for 12 months would've stopped it, I'll never know but 1 thing I do know is I'm glad I didn't waste a good 12 months feeling awful only to get rediagnosed. Wishing you all the best in whatever treatment path you choose
Kat x

Thank you for your reply. I did speak to my oncologist about the diarrhea and he said his patients were finding it manageable with the anti diarrhea medication they recommended with it for the first couple of months. Some did not even need it....so it seems everyone is different and it affects people in different ways. I am definitely going to give it a good go.  I have just heard that if my oncologist had applied before the cut off date we would still have been covered under compassionate grounds to have this free of charge so feeling a little let down at the moment. I guess I should be thankful that the company are subsiding it but $18,000 is still a hell of a lot of money. Looks like back to work for me.  Hopefully by the time you finish your Hercepton the PBS have approved it for funding.

Hi @Pascoe
i am on herceptin until September this year, I have asked the oncologist about nerlynx a couple of times.  The oncologist mentioned to me that diarrhoea with nerlynx is very severe.  She said that a few of her patients started this but they quickly discontinued due to the diarrhoea.  Speak to the oncologist to see if you can speak to someone who is already taking it.  I would like to take it but I am very worried about the severe side effects.