Am I being selfish?

Hello anon. Treatment choice is incredibly personal. And you are the only person who can know what is best for you. However, I am not sure throwing the same thing at your tumor when it hasn’t really worked very well doesn’t make too much sense to me – apart from the other issues you raise. My thoughts…not that they really matter…but you posted, so:
1. Did you take nivo alone after the ipi/nivo portion of your treatment? Because that is the usual protocol and you don’t mention it. Ipi is the bad boy of side effects, so nivo or pembro alone might be worth trying and you may tolerate it better. Studies show that even patients who had bad side effects from ipi often can tolerate either anti-PD-1 product fairly well.
2. I presume you are BRAF negative??? Since you don’t mention it. But, if you are BRAF positive targeted therapy would be an option.
3. You may well qualify for a clinical trial. You can enter “melanoma” and “Stage IV” as well as “recruiting” at this web site: https://clinicaltrials.gov/ and see what options there are. The first part explains inclusions and exclusions. Locations at which the trial is offered is noted at the bottom.
4. You may want to request that your tumor sample be sent for additional analysis. Some melanoma peeps who have not responded to immunotherapy can find effective therapy – like meds used to treat HER-2 breast cancer – in this way.
5. Radiation in combination with immunotherapy has been proven to be more effective than either therapy alone. I hear you when you say you are sick of being sick. But, I figure, if I’m gonna be sick…I want it to be worth my while…meaning have a shot at the best response. So…though I don’t know if radiation is feasible as I’m not clear where you lesions are currently, if might be something you ask about.
6. Make sure you are seeing a melanoma specialist. There are additional treatment options out there. Throwing the same thing at it over and over may not be the best plan. Additionally, though side effects can certainly happen no matter the treatment or provider you choose, melanoma specialists are better recognizing side effects sooner, therefore decrease your suffering.
7. Bottom line, the choice is yours. I wish you my best. Celeste

That’s an amazingly difficult thing to consider. I don’t know that I have a great answer, but I feel like you are not yet at the end of the road. The IPI/Nivo has proven to work very well for you, as far as killing the disease, so there’s still a seemingly good chance that it could bring you to stable and who knows, it could eventually help you may make it to NED. That said, the drugs are obviously kicking you around and this cancer treatment experience is hard enough without all those complications. I feel like you aren’t being selfish, but that you are feeling very low about having to go through this again. It may be time to try talking to your doctor about what you are feeling. I don’t like to do that kind of thing because of the stigma I guess, but sometimes you might need to.

Also, I wonder if you’ve gotten a second opinion with another melanoma specialist. IPI/Nivo is probably what your oncologist prefers because it’s tried and true to work for you, but maybe they don’t realize just how much you don’t want to go through all that again. There are other trials available if you refuse IPI/Nivo. Don’t give up just yet

Does your facility have a palliative care/symptom management department? Many people think palliative care is only about of end-of-life; it can certainly be that, but its main focus is your quality of life right now at your current stage, whatever it is. I saw the palliative care team at my treatment facility when I hit Stage 4, and would consult them again without hesitation, particularly if I had to decide whether/how to undergo a proposed treatment that could be severely debilitating. Wishing you all the best.