Immune Therapy – Opdivo

Short answer: YES!

Long answer: Yes. Even though I got diabetes out of the deal, I seem to be one of the people it helps. My tumors are smaller or stable. I don’t think I would be here without it. I was/am stage IV and Opdivo was my lifeline. If I was taking it for adjuvant treatment, my thinking might be different, but probably not. Knowing what I know now about melanoma, I think I would want to attack it with the best treatment available. 

Good luck!

Hi Mike!!! 

I replied to your previous post as well…my son is the patient and to answer your question would we do it again???  

Yes!!! A thousand times yes!!!! 

I felt doing something was better than doing nothing and he has done extremely well with treatments!!!!! Very little side effects. 

I researched and researched and used this forum to answer questions I had from actual patients…and I do not regret my decision at all. My son is NED and I pray every day he stays that way!!!! 

Good luck to you!!! 

Kelly 🙂 

I am amazed how many people with melanoma are more afraid of side effects than melanoma. I had 5 doses of yervoy and 52 doses of opdivo. Before I started I never once worried or cared about side effects, I had 7 tumors in my lungs and my choices were risk side effects (if my immune system even reacts to the drugs) or die. So it took me about 0.01 of a second to choose risking side effects. Yes, I would do it again, even the yervoy which is way worse for side effects.

Mike, on your profile it says that you don't know what stage you are!!! Could you let us know what procedures you have had so far. How, do you know for example that you have melanoma would be my first question, if it was based on taking off a mole, then there would be a pathology report of the tissue. That would tell us depth of melanoma tumor which would imform us if you need sentinel node biopsy etc etc. Hard to give advice to some one about taking Nivo when they might be stage 1 or 2 and not need any treatment at all. 

Hey Mike, 

If you are confused, I would recommend running genetic tests.

1. You May want to do PDL-1 Test, typically the more PDL-1 your tumor expresses the more likely you would respond to an immunotherapy (anti-PdL1). So that may give you some idea on whether it is a good option for you. 

However, even people with zero PDL1 may still benefit from the treatment, but the % of those who do still is small. 

2. BRAF Test, based on which you will know for sure if you would qualify for anti-braf medicines or not 

I would run both test, then discuss options with an oncologist. 

I hope that that gives you some prespective, good luck 🙂 

Yes!  I absolutely would.  I'm still on it.  I started with the combo Ipi/Nivo and only tolerated 2 doses.  I was off treatment to deal with the side effects from that when I experienced a brain met.  I ended up back on the Nivo and I'm still on it two years later.  My side effects have only been fatigue, mild itching (controlled with Zyrtec), and loss of thyroid function.  The doctor's are telling me this saved my life.  The side effects for me with Nivolumab (Opdivo) alone are not so bad.  So I'm tired – that's better than dead.  So I take a thyroid med, it's a tiny pill once a day – that's better than dead.

Good wishes to you,

Jennifer