Combo Immunotherapy Side Effects and Long Term Results?

Beachbaby33

My husband just began an aggressive combo immunotherapy, using ipilimumab (Yervoy) and nivolumab (Opdivo) to treat Stage IV Metastasized Melanoma. If you could please share any common side effects and/or positive responses you may have had, it would be greatly appreciated. It's very unpredictable I am told, but it's always good to hear from people who have experienced it first hand. Thank you in advance and best wishes to all.

TMShogren

I did ok on Optivo alone. When Yervoy was added, I developed colitis after the 3rd combo infusion. Treatment was stopped, I had a second surgery and radiation before trying again almost 9 months later. I had the same reaction (colitis). In both cases, it took about 6 weeks to get the colitis under control. Good luck!

Terri

I had terrible colitis after Yervoy. I have never done combo. I have melanoma

Beachbaby33

Thank you so much for your answers. I'm sorry to hear you had colitis, we will certainly watch for this unwanted side effect. Wishing you all the best!

buffcody

My experience with both Yervoy and Opdivo was not only a good one but one to which I credit that I am here today, cancer free, and am able to answer your question. I began my journey in 2012 at Stage 4, never having observed the markings of Stages 1-3, if they had ever manifested themselves. A few months after diagnosis and an excision of a lung lobe where the melanoma first appeared, another metastisis appeared in the brain in the form of two tumors. My oncologist started me on a simultaneous treatment with Yervoy as I got the tumors radiated. Four doses. The tumors have never returned. Next major metastasis was to the abdominal area in the narrow area between the duodenum and the pancreas. When intensive radiation did not remove this tumor, a combo of Yervoy and Opdivo therapy was begun. After the initial dose of Yervoy, the next year was a biweekly dose of Opdivo. After that year treatment, I was given the verdict of "complete response." And the melanoma has not returned. Were there side effects? Yes. Some pretty significant ones. These include a thyroid gland that went crazy in both the hypo- and hyper-directions and I now have no thyroid gland. Adrenal insufficency. Type 1 diabetes. Neuropathy (probably a side effect). I consider Yervoy to be the agent to blame for most of these. And the Type 1 diabetes could have been the result of the cancer and not the Opdivo. But I still would choose the treatment with the possible exception of that final dose of Yervoy. Hope my experience helps. Don't hesitate to contact me.

Beachbaby33

Thank you so much for your answer, Buffcody. We really appreciate it, in fact, it really helped lift my husband's spirit to hear your story. This is his third "scuffle" with cancer (mantle cell lymphona 2013, melanoma 2018) and now the melanoma has metastasized to his brain and lung 2021. The brain tumour was successfully removed in August, cavity treated with radiation, and now Immunotherapy to shrink the tumours in his lung. He is also scheduled for 4 "Combo" doses of Yervoy and Opdivo, followed by bi-weekly doses of just Opdivo, then once a month for a year or two. This, of course, is all dependent on how well he tolerates the treatment. After his first treatment he experienced extreme exhaustion, bad taste in his mouth and a bit of a productive cough. He is normally a very active person, so this scared him. He felt worse after this one treatment than when he was taking chemotherapy and had a stem cell transplant to treat his Mantle Cell Lymphoma. Tests indicate the cough etc may be "just" side effects, and already days after I posted this question, he is feeling better and more energetic (hearing from others who have been through it really does help). We understand it is all very unpredictable, but reading stories such as yours is very encouraging. Thank you very much again, as we have new questions, we appreciate your willingness to reply.