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To continue Nivo or not continue Nivo, that is the question...

To continue Nivo or not continue Nivo, that is the question...

Posted By
4/11/2019 6:48pm
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Replies: 4

Thank you for forgiving my attempt at humor. I’m once again in need of advice from some of the veterans and google researchers around here. :)

A little bit of background...

After 8 months of single-agent Nivo (following surgery and SRS to the brain), I moved to the Ipi/Nivo combo. I tolerated 3 of the 4 treatments before landing myself in the hospital because of my AST (1700) and ALT (2300) numbers.  The good news is that at the hospital I learned that my two lung tumors were shrinking as a result of the combo and my oncologist thought we could add in radiation to hopefully move the elimination process along. So, while on steroids to try to get my liver numbers back in the normal range, I started radiation.

Radiation and, hopefully, steroids wrap up next week and the initial plan was for me to go immediately on single-agent Nivo to get the benefits of concurrent radiation/immunotherapy treatment. However, I’m hesitating because I know if my liver acts up on Nivo, I’m done with immunotherapy forever and I’m wondering if giving my liver a bit more time to recover before resuming Nivo might be a better idea. So, here are a few of my many questions...I know there is no perfect answer but am grateful to anyone who takes the time to share their experience/perspective:

- With almost a year of immunotherapy in me, prior to starting radiation, would that be considered concurrent treatment?

- What is the likelihood of a negative reaction to single-agent Nivo the second time, if I tolerated it well the first time?

- Is there good reason to “save” Nivo for later in case I need it or would it be better to just get it in my system again now?

- Is 11 months of immunotherapy treatment long enough? Should I go back on Nivo even if my scans are clear after radiation?

Not sure that it matters but I am BRAF positive so checkpoint inhibitors are still an option if I ever need them. I just like the durability of immunotherapy. 


Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

Hi Amanda, your plan as layed out of radiation followed by going back on Nivo makes sense to me, I would also want to do a Pet-ct scan down the road to see if the tumors in the lung are still active or just scar tissue or dead melanoma tissue. I think down the road if scans are good and you want to consider stopping nivo then consider the two articles below it making a decision, they are the best I have come across on the topic of stopping after reaching two years of treatment in one article and the other article looks at what happens in non clinical trial setting to patients who stop with CR or PR or stable disease situations. I am sure Celeste will add to this post with her thoughts on radiation and immunotherapy together and the benefits of combining them. Best Wishes!!!Ed

Sorry about the link, he is a good guy to follow on new ideas in melanoma but what I was going to give you follows.

Hi Amanda

I’m not sure what help I can offer you only to give you my own experience.

I was on an adjuvant trial of Ipi / Nivo, discovered I had actually progressed before starting the trial and ultimately had 2 lower doses of Ipi/Nivo and 2 normal doses.  Then my Liver & Pituitary gland fell over.  My last Ipi/Nivo was May last year and it was effective until February this year when scans showed progression.  I opted to have Nivo monotherapy due to my concerns about side effects and that being the end of immunotherapy for me.  I had round 2 on Monday and so far am ok but have weekly blood tests to monitor my Liver.

At the time I kept asking to go back on Nivo after my Liver had settled but kept being told in many cases I would have had enough plus there are certain limitations on our healthcare system in the UK.  Being relatively young (37) they were worried about long term effects as well.  I don’t know if Nivo will work again but have the option to add Ipi next.  It’s a risk but if I was back in that position again I would have continued with Nivo given the choice.

its a difficult balance and my worry is that side effects will haunt me again and then I am at the end of the road with no options left.  I wish you the best of luck with your decision and treatment.