Hello sharoncrete, I am popping in this group from my usual melanoma group as I have experience on an immunotherapy drug called Pembrolizumab which is similar to Nivo but by a different company.
I think you are very lucky to be offered it, and it gives a great promise of working well for some people and not having very harsh side effects. For others though it might not work or have bad side effects and you never know which group you are going to be in.
I would say it’s very important to keep positive, and keep your team informed of any side effects. Make sure you have a good thermometer to take your temperature so you know what’s normal for you and they listen and read the literature they give you on reporting side effects. The staff at my hospital were great and reassuring when I had an all over body rash, they knew how to deal with it and a delay of treatment by one week did not affect me getting an all clear for me 6 months after starting treatment. There are protocols for each possible side effect and it helps for the teams to be notified as soon as possible. I was sent home with tablets for diarrhoea just in case as it was a common side effect but I never had any problems in that area.
Pace yourself as you might get fatigue like me for the first few days after each treatment, which lessens as you get more treatments. You have had chemo so this might be a walk in the park for you as treatment is much shorter only 30 mins for me plus the saline drips before and after. My profile is there for you to read and if you have any questions just ask, I know it’s not the same cancer but I popped in as I’m not sure how many people in this group might have the experience you are after.
Hi sharoncrete, my husband has been on nivolumab now for over 6 months now. He finished his chemo in DEC but due to growth started on nivolumab end of Feb. It is still reducing his tumours and has worked well for him as the situation 6 months ago was very bleak. He gets very tired at times. Has good days and bad but no where near as bad as side effects of his chemo. Good luck to you hope it works as well for you as it has for him so far. Recently have noticed an increase in dizzines and other side effects.
Many thanks for your input- most appreciated as I am almost in dark on this one! Sounds promising, so happy to proceed. Think this is likely my last roll of the dice, so a few extra months of good quality life would be great for me and of course for family. Realise I am lucky to have this funded. My hospital (Guy’s) and hospice have both been wonderful. Good luck to you and of course your husband.
Thank you Naomi have for useful information- all noted! Yes, I am indeed very lucky, and am praying it will work for me. Been knocked off feet by latest chemo. Will keep in touch if that is ok with you. Best wishes and thanks again - Sharo
Hi. Just an update on husband. He has now been on nivolumab for 9 months and has had his latest 3 month scan results today, things remain stable so treatment continues. Continues to have good and bad days but still says much better than chemo.
Hello Kerry88, a few weeks after writing the post you read my husband unfortunately suffered a very rare side effect of the nivolumab (less than 1%) which resulted in him been in intensive care and been diagnosed with diabetes type 1. Due to this the nivolumab was stopped after him receiving it for 9 months. However he does not regret having the treatment it has given him more time as he was in a very bad way before it with not much time left. Amazingly since stopping the treatment in dec 2018 his cancer has remained stable - still there but no further growth. He has exceeded medical expectations and we are now in what the medics have said is unchartered territory. He currently has a good quality of life despite the ravaging on his body of his treatment prior to the nivolumab and has not needed any pain relief since treatment was stopped. We will always be grateful for him receiving the nivolumab - it worked so well for him despite the rare side effect.
wow what a story!! so glad he got the help he needed and so pleased the cancer is stable still that gives me hope. did his pain decrease when he was on nivolumab? he has had a call today off oncologist his thyroid is low so onto tablets x
Hello Kerry 88, we saw improvements after the first infusion of the nivolumab, it was quite amazing really. He was in alot of pain prior to the start of nivolumab due to the growth and spread of his cancer and on very high doses of different pain relief - after the first infusion we noticed a difference in his pain and he was very quickly able to sleep on his side where the growths were and some still are. He improved throughout his time on the treatments with very quick results. I can remember him sleeping alot at times but compared to the side effects of his chemo this wasnt a major issue to us. I am glad it has given you some hope because our situation truly looked very hopeless. He was diagnosed as incurable at the same time as his cancer diagnosis that was an unbelievable 3.5 years ago. Things looked very bleak and that's how the picture was painted to us. We never expected him to still be here and to have had a reasonably good quality of life for the last approx 2 years. We are so grateful to his medical team he has got to see lots of things we didnt expect him to see and our children who were and still are quite young have had more time with their father and hopefully lots more to come. Good luck to you and your husband, I truly hope the treatment works as well for your husband as it has for mine. Please let me know how he gets on.
wow that’s amazing richard has still been getting his pain but i think its easing however hes only ob diahydrocodeine twice a day so not too much and we both think he doesnt need it as much but worried the pain will come back strong so monday after his next infusion today were going to just try paracetamol again. wow 3.5 years that’s amazing we was told richard has 6-12 months but now a new consultant has said he can have this immunotherapy for upto 2 years so im preying it works like it has for your husband as we too have children and our little girl is only 3 months old. i will definitely keep in touch if thats ok xx
