secondary effects – pains and soothing ?

Hi Mike,
So sorry for what you and your dear one are enduring. And thanks for your kind words. I don’t have an exact answer for your specific question, but here is some info and my thoughts:

I am pretty impressed with the data coming out of reports on NKTR- 214 (bempegaldesleukin) with Opdivo recently and in the PIVOT trial. Here is my latest post on that topic with links within-
https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/nktr-214-bempegaldesleukin-with-opdivo.html

Now the obvious fly in the ointment is the lack of consistent potency in the making of the drug!!!! But, hopefully, those errors have been rectified and melanoma peeps are getting the drug as they should!!!!!

Now, all the reports note that side effects are “no worse than when taking nivo alone”. I have always had a big problem with clinical reports in which researchers quantify side effects as “manageable”, “tolerable”, “minor”, etc. Well, yeah! When they’re not happening to YOU!!!!! A conversation I actually had with Melanoma Big Dog, Dr. Weber!!! I mean, we ratties get it. Would you like to have this bit of misery? Or die of melanoma? Clearly, we all know the answer to that, but misery is still misery!!!

So – this combo is so new that I am not sure what to tell you and perhaps those on the combo here can give you some intel. However, from all the data and reports, it would seem that most people who are taking the combo are dealing with side effects that are common for those who are taking anti-PD-1 (nivolumab {Opdivo} or pembrolizumab {Keytruda]) alone. These drugs are known to cause joint pain for most who take them. Most folks deal with it by taking advil or tylenol. If it gets severe they sometimes have to take a break in treatment, be treated with steroids, or even take drugs like those for folks with severe arthritic disease. However, most of us grin and bear it. I viewed it as a battle I would win….rather than my joints! HA! (But I am perverse and weird!)

Fever is a rarer side effect from anti-PD-1, but it does happen for some. Often treated with rest, hydration, antipyretics.

Cough is another relatively common side effect form anti-PD-1. Immunotherapy can cause inflammation in the lung much like that suffered by asthma patients. If there is any underlying asthmatic tendency it can be easily triggered by the drug as it was in my case. A lot of patients just tolerate the cough and do okay. Some get relief by using albuteral inhalers (common med used by asthmatics) as needed. I had to use albuteral and even inhaled corticosteroids to manage my cough and wheeze. And if it increases, it can even become more severe “pneumonitis” that would require treatment along the lines of that which I outlined for severe arthralgia.

Now…I know this is leaving out the NKTR-214 from the equation, but it’s where I would start my thinking and conversations with my oncologists if I were in your shoes. Here’s a post on nivo side effects that I put together some time ago, but it still sticks: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

If you are seriously bored – I put this post together about my personal side effects during my time on nivo by reviewing the record that my blog allowed me. It is more minutia and takes longer to read than the time I actually invested in my side effects, but it does have some enlightening points, esp about the time line. If interested: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumabmy-story.html

So…hope that helps at least as a starting point of a larger conversation with your love’s oncologist. Hang in there. Thank her for being a rattie for us all!!!! And thanks for two lovely visits I have been blessed to have in your country. (Paris, Marseilles, Nice, Antibes, Avignon, Bordeaux, Dune du Pilat, Sarlat – Oh my goodness!! All so lovely. Filled with so many gracious souls and lovely memories!!!)
Wishing you both my best. Celeste

Hello Mike,

I don’t know about the combination you’re asking about, but I was on a clinical trial with either Opdivo alone or Opdivo/Yervoy. I had some joint pain at first, but that went away. About six months in, I experienced coughing and wheezing that lasted to the end of the trial, but it was manageable.

Can I ask if the treatment your partner is getting is covered by national health insurance or a clinical trial? The reason I ask is that I worked in France for many years and obtained French citizenship while I was there. A few years ago, I moved back to the US, partially to help care for my father who had dementia (since deceased). My original plan was to eventually move back to France (loved the lifestyle in Grenoble), but I had to find a job and then now I’m dealing with advanced melanoma. I’ve been able to work without too much issue until now, but business at the company where I work isn’t great, and I guess I wouldn’t be surprised if they tried to take the opportunity to unload a potential problem. In that case, I’m sure I couldn’t afford melanoma treatments here. I was wondering if treatments are part of the health insurance in France (or Germany, where I lived also)? If you know anything about what is or isn’t covered under French health care, I’d appreciate your insight. It might be useful for the future. Thanks.

Hello TBA! Im Mike nice to meet you (under our shared circumstances anyways! 🙁 so you say your dear friend has Melanoma? (boy Melanoma sure has traveled around the world!) And im gathering she is in a “Trial?” NKTR-214? I imagine that is a trial drug?? Along with Nivolumab wich ive done myself (in combo with Yervoy, and not with a trial drug) im sad to hear shes having a tough time with aches & pains soon after injections, can i ask, is the NKTR-214 an “Injection”? Or an IV drip like Nivo? Ill have to research if you dont reply by then, has she tried Ibuprofens?? What works great for me is Naproxen 500mg (generic for Naprosyn) its been my “Life Line” for years now through all my aches & pains either caused by side effects of therapy or by my tumor pain itself!! I wish the VERY best for your friend & yourself, read my latest post, i to will be starting a Clinical Trial October 8th (American time haha)… take care of your friend, she needs you…