Stage 4 Lung mets and Opdivo

Dear BRR,

Am sorry for what your father is going through. I will try to answer since no one else has yet answered (holidays?). I have been on Keytruda which is similar to opdivo (or nivoluminab). Most people tolerate it pretty well, with fatigue the main side effect (and in my case I tried to keep moderate exercise to get myself through this or to ignore it). There can be worse side effects though, so you just have to monitor carefully – you and your doctor will do this, together with regular bloodwork. If you do a search you should be able to find other people’s experiences, but most are OK.

One question is whether you should combine the nivo/opdivo with ipi – the combo – which has a better success rate but at a much greater side effect risk. Others know more about this. I was on ipi once and had to quit after one treatment because of side effetcts.

You may want to add which country and location you are in , in your profile. This can determine your treatment options, Best advice is to make sure to see a melanoma specialist.

I hope your father will be well
Best wishes Mark

Hi BRR,

Sorry for what you and your dad are facing, but glad that he is getting immunotherapy. Side effects to anti-PD-1 vary a good bit patient to patient. I put this together some years ago, but these most common side effects still stand: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/side-effects-of-nivolumab.html

The good news we have also learned is that while the elderly can certainly develop side effects to immunotherapy, just like the rest of us – they do not suffer them to any greater extent. Here are several posts on research that demonstrates that point (click on the links within to additional info): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/08/elderly-in-need-of-immunotherapy-can.html

Your father should be watchful and report any untoward reactions to his docs as soon as he recognizes them. We have learned a great deal about how to address side effects much more appropriately and effectively over the past ten years. Hope this helps. I wish you both my best. Celeste

Hi BRR
So good that you can research and advocate for your father.
I also had lung Mets. They were large. I started with Keytruda ( similar to opdivo) which shrank them down and then had the vats surgery to remove them. I had an infusion every three weeks for 9 months. At that point my side effects were too bad to continue. In my case I had very bad arthritic type of joint and muscle pain and couldn’t move. I am now on a self inject drug called humira which works wonderfully and I live and work as normal. ( I’m 63) IN general the side effects seem to be the result of the body’s inflammation reaction. The one to watch out for is colitis which is serious. In very rare cases the heart can be inflamed. The other very common side effect is loss of thyroid function. That happened to me right away and I am on thyroxin, just a small pill once a day and my hormone levels are normal
I hope the immunotherapy works as well for your father as it did for me
Anne-Louise

I am also in Eastern Europe. 🙂 I had Keytruda for Stage 4, and it worked well. My side effects were tiredness, a little bit if a rash, and eventually colitis and weight loss. We stopped before I got to a full response because of the colitis, but the immunotherapy kept working, and I reached NED soon after.