Nivolumab (Opdivo)

topenddownunder
Contributor

Nivolumab (Opdivo)

Hi all..Just wondering if anyone has been on the immunotherapy drug called Nivolumab. I`ve just had 6 months on "Alimpta" and have found out it hasnt been working. My Tumor is now back to nearly the size it was 12 months ago.My Oncologist has mentioned Nivolumab, and I was wondering about side effects and peoples opinions about it. I know its very new and some of the side effects sound nasty, but am aware not everybody suffers from these. Thanks Greg
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Jules2
Super Contributor

Re: Nivolumab (Opdivo)

Hi Greg Not been on that drug but just looked it up. Like most cancer drugs it certainly has a few side effects listed. Gotta hope that you are on the low end of the scale re side effects. Good luck with it all!! Julie
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Jules2
Super Contributor

Re: Nivolumab (Opdivo)

ps ... saw that it mentions monoclonal therapy ... I had a monoclonal therapy but it was called cetuximab aka erbitux ... very doable but certainly had a few side effects. For me, mostly itchy inflamed skin and hair growth where I didn't want it ie very long eye lashes and rugs on my arms and legs!
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Not applicable

Re: Nivolumab (Opdivo)

Hi Greg My father has been asked to consider Nivolumab..They actually want him to start next week. Yes the side effects are pretty bad. I's a hard decision. Have you started the treatment and if so how did you find it? I hope all is good. Rita
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topenddownunder
Contributor

Re: Nivolumab (Opdivo)

Hi Rita. Sorry i havent got back to you earlier, but ive had a long stay in hospital with viral pneumonia.Getting better now.I had 4 cycles of Opdivo.but had allergic reactions to it.The oncologists tricked the body into accepting it by larger doses of dexamethazone {steroids} antihystamine and delayed{slow} drip rate.The side effects i got was loss of taste sensation,neausea,Chemo taste{mettallic}shortness of breathe and mouth ulcers.Unfortunately for me it didnt work BUT i have a close friend that has been on it for 6 months with not only a reduction in tumor size but also little or no side effects.it seems to depend on the individual as to how well it works.hope this helps greg
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ScottJS
New Contributor

Re: Nivolumab (Opdivo)

Hey there,

 

I have had stage 4 lung cancer. It metasticised to my brain metastasis about a year ago (April 2016). The cancer was originally diagnosed in August 2015. Initially I had chemo and 30 radiotherapy treatments for the tumour in my right lung, which had spread close by into my lymph sysyem. Last May, after 10 whole brain radiotherapy sessions the tumour stopped growing, but it left me physically wasted for 5 months. My Oncologist started me on Nivolumab (Opdivo) late in October last year. I am treated for 90 minutes every fortnight. The results have been far better than expected and although my 2 tumours haven't shrunk yet according to a CT scan in January, they have not grown either. I feel physically better than I have for a year now and am just taking it day by day. I am also growing wheatgrass as a Chinese friend of mine suggested it. I juice it into 75 ml shots, one a day. I hope this may offer encouragement to others who may consider Nivolumab. It has been life changing for me. At this moment no one would even know I have been this ill! I think staying positive and praying are the 2 other things I have going for me, as I have 3 kids.

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