Hi Kerry88, what you wrote about the pain coming back stronger was what worried my husband. He took the pain reliefs months longer than necessary, long lasting morphine tablets (high dosage) and liquid morphine for breakthrough pain along with high dose pregabalin. Even on all the pain relief medication he was still in pain prior to the nivolumab. I can recall many times rocking him and stroking him in my arms whilst he was crying in pain - it was awful. However I recall a home visit from our wonderful macmillan nurse who said it's harder to get the pain under control when it has got out of control so with that in mind I wouldnt alter any pain relief dosages without advice from your team. We were given the same time frame as you on diagnosis, his life insurance paid out. He had 6 months aggressive chemo with immediate growth on its completion. A few months of been in agony from the speed of the growth with visible deterioration, given approx 3 months left on the start of the nivolumab. He will see our son start high school in sept and our youngest daughter start year 5 in primary. It's awful that you are going through all this with a 3 month old baby, life can be so unfair, my heart goes out to you and your family. Take care, and yes definitely keep in touch x
wow thats absolutely amazing hun thankyou so much you have given me hope back when i thought i had lost it all. richard too finished cisplatin and f5 chemo and it had grown and spread so all that agonising treatment for nothing but hopefully he has same results as your husband. no life really is cruel at times isnt it and yourself having young children so sad but we have to focus on the positive hun and his outcome is amazing keep going strong xx
