Hi my husband is on nivolumab and lpilimumab since September 2019,after the 1st treatment he had very high temperature and had to be admitted to hospital for 4 days came out for 2 days and readmitted for 7 days,2nd treatment he was ok up until 4 days before his next treatment wouldn't eat,sleeping all day, saw the specialist it seemed that the treatment had affected his thyroid gland and it was way too high, 3rd and 4th  treatment have been fine no side effects ct scan on the 13th of December results 24th of December to see if the treatment is slowing the spread of cancer down, how are you keeping?

Thanks for your post.  My husband started his trial in August.  We did not know for sometime whether he was on the drug or the placebo.  He has not had any real symptoms, just felt that something was different and was convinced he was getting the drug.  The first scan after 3 doses showed a slight improvement which was great as it meant he was on the real stuff.  The second scan after 6, showed a slight thickening - not great but the consultant said that was quite common once the drug started to work.  His kidneys then started playing up.  Only very slight but as its a trial they have to be really careful and there was a possibility he would have to come off.  Having drunk a lot of water he has managed to get his kidney function back to where required.   Next scan is January - very scary of course but just keep hoping.  He is feeling so well and is almost back to normal.  Much more energy and get up and go so it will be devastating if he cannot carry on.  The trial is only for a year and then who knows?  Are you on a trial or are you paying privately.  My husband has mesothelioma - lung cancer caused by asbestos - and Nivolumab is not licensed for this.  

Hi my husband is having treatment through the nhs there was no placebo ever mentioned hubby has to keep  a diary every day (since started treatment in September ) saying exactly how he feels, hubby has kidney cancer and spots on his lung the only treatment he was offered was operation to remove his kidney and immunotherapy (pallative treatment ) in the hope they can slow down the spread of cancer, he has been told that he will be on a single dose once every 4 weeks for the next 2 years, reading about immunotherapy it keeps working for a year after the last treatment. Today hubby not so good as he has an infection but lucky he was given antibiotics as soon as his temperature stared to rise, so didnt need to be admitted to hospital.

Take care, and I hope by a year Nivolumab will be licensed to be used on asbestos related cancer patients  

The placebo only comes in when its a trial so they can monitor what is working.  It means they are being treated a bit as guinea pigs but just hope it keeps working.  Good luck to you both.

My husband is on this for mesothelioma and so far no side effects .feels a bit tired at times but he is 79 he has been on it for 6 months .after 3 months it has halted the growth.waiting for results of last scan.so fingers crossed.

Hi Bathouse and welcome to the forum.

It's great to hear your husband hasn't experienced any side effects from the Nivolumab and that it's been successful in stopping the growth of the cancer.

This must have been wonderful news to receive and hopefully you will receive more good news when the results of his scan come through.

I'm not sure if you were hoping to hear back from the others but if you were, I thought I should let you know that this discussion hasn't been active since 2019, so you may not get a reply. 

If you would like to interact with members who are on this journey, you may have more luck posting on more recent threads or starting your own discussion.

I hope this helps and that you and your husband won't have to wait too much longer for his results.

Kind regards,

Steph, Cancer Chat Moderator