Nivolumab ( Opdivo)

Hi

I'm sorry to hear that your husband has had to stop his targeted therapy drug due to the adverse side effects he was getting and then how poorly he's been recently. 

It must be a very worrying time for you especially as you want him to be fit enough so that he can start the planned immunotherapy treatment. I'm presuming that you've brought all the problems he's having to the attention of his CNS so that she can offer any possible help.

I don't have any personal experiences to share about nivolumab but if you type the name of the drug into the search facility in this group you'll find quite a lot of previous posts discussing this. You could have a read of those and respond to any that you think might be able to help you further. 

Wishing you and your husband all the best.

x

Thank you for your reply Latchbrook, I will use the the search button to see if I can find any information x

hi

The opdivo treatment was easy  Like an hour on a business flight Sit in a comfy recliner and a drip in you arm for about an hour. Food and drink bought to you. I had no side effects. My last cycle was in October 2018 and my primary timer has shrunk and i am told the is also necrosis So good news

Thanks Titus, that is encouraging news. Fingers crossed the treatment is as successful for my husband.

Hi jk131 ,Sorry your hubby is having tough time with the therapy,  My husband is having the nivolumab and ipilumamab, he had to stop the treatment for a while due to side effects and landed up in hospital a couple of times the therapy caused severe diarrhoea as any pain tablets he was taking were not staying in his system ( this happened twice ) a high dose of steroids sorted it out , He then got a rash that covered his body  ( apparently a common side effect of the therapy) again a steroid cream helped immensely,  loss of appetite,  also lower legs swelling  it seems each round of therapy throws a  different side effect up  which up to now they have been able to sort out,  He was told if the diarrhoea starts again they are taking him off the therapy which unfortunately it has , was the kidney failure due to the therapy? As my hubbys  only remaining kidney function is down also his adrenal gland function,  Hope your hubby feels better soon and can get back on his treatment. 

Amye

Hi Amye

sorry to hear that your husband was so unwell on the nivo/ Ipilumamab. At the moment my husband is not taking any cancer treatment due to kidney failure. At the time he was taking tivo. ( Fotivida) The side effects were not good so his oncology consultant lowered the dosage. Unfortunately he became very unwell very quickly while we were taking a few days holiday in Norfolk. It was a combination of the drug plus Oxycodone long release tablets. plus being severely dehydrated which did not help. The TiVo was obviously causing him to many side effects. Of course this has caused more trauma to the kidneys. All medication was stopped. His consultant has mentioned the Nivolumab as the next treatment plan providing his bloods have improved when we see the oncology consultant next Friday. He is booked in for the nivo the following week, providing his blood work has improved! He also came out in a rash on his back, which they put down to a heat rash. He returned home after a two week stay in hostpital and the rash got worse. We really haven’t been given diagnosis why this is. Unfortunately last week he started getting very bad pains in what he thought was near his healthy kidney, it turns out his liver is pressing on a metastasis. ( the kidney cancer had spread to Adrenal gland, liver, lung and hip bone ) He is now on a low dose steroid, we are expecting a call tomorrow from the oncology nurse to see how he has been over the weekend. Apparently his protein level is only 18, I believe this should be in the region of 40 ?  His creative level is 180. I believe this should be 115 or maybe higher for him because of the damage that the kidney failure caused. When he was in  hostpital and once he had improved they started him on a Fentynal patch for pain relief ( instead of Oxycodone long release tablets ) They also changed a few other meds. Since being home he is unable to sleep for more than two hours before waking. Before his hostpital stay he was sleeping very well. He is now taking a sleeping tablet and a antidepressant to help. It has made no difference. You are so right in saying that after getting over one side effect another seems to take it’s place. It’s sometimes so hard to stay positive. I do hope that your husband is offered a treatment that he is more tolerant to and makes good progress.

Good Luck

Maureen

Hi Amye

ive just read your post as my husband is on the same treatment / just done round 2 combined immunotherapy and we are struggling. Severe diarrhoea and extreme fatigue with loss appetite. Need advice! 

Shrubbery99 , Is hubby on a trial if so you should of been given  a card to contact them if you are at all concerned,  my hubby was going to the loo 6/7 times a day so i rang the help line they advised me to give him 2 loperimide and then 1 after each time he went to the loo as they can become dehydrated,  my hubby survived on toast for a while as he had no appetite whatsoever,  keep an eye on his temperature as if you phone the help line they will ask what his temperature is,  i am more than happy to private message you any time you want to chat/ rant but don't know how to do it without making my private details public , if you are worried which you obviously are ring the help line , are you under a hospital in the northwest? X x