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Could Anyone That Has Had Infusions With Both Drugs—Nivolumab/ipilimumab—let Me Know How Bad The Side Effects Were?

A MyMelanomaTeam Member asked a question 💭

My husband must decide if he wants to go forward with these infusions.

September 14
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A MyMelanomaTeam Member

Jennifer, I had Ipo/Nivo for a year and it seems to have helped me. With respect to my 3 left lung tumors, one of them, the smallest one, is now gone. And, the largest one and middle-sized one are now both shrunk in half. And my oncologist that gave me the immunotherapies thinks there's a decent chance that the two remaining ones that are shrunk in half may not be living cancer any more. I'd certainly love that.

With respect to my left brain, the initial 2" one there was semi-emergency surgically removed back on 11.30.21. The new, now 5mm one up there, just below where the original 2" was, hopefully it will have to battle the immunotherapy changes to my blood system. But, if the immunotherapy hasn't ever gotten through my blood brain barrier, then I won't be getting any help up there.

My negative side effect from the immunotherapy was that it whacked my pituitary gland. So, I have to take hydrocortisone and levothyroxone pills every morning, and another hydrocortisone pill every evening, all for the rest of my days. But, if it really is what's helped me, and I believe it probably is, then that's okay.

I personally have spoken with three other people that had, like me, nivolumab (Opdivo) and Ipilimumab (Yervoy), and it helped all three of them as well. They all three had negative side effects as well. One was permanaently wiped out joints, one was permanently wiped out guit, and one was T2D (Type 2 Diabetes) requiring serious daily insulin injections.

All four of us have negative side effects, but mine are likley the least harmful. Bottom line is tho, so far it seems as though they've helped to save all four of our lives.

September 25
A MyMelanomaTeam Member

The Colorado guy I referenced was actually a regular high country runner until these immunotherapies were taken. That semi-wiped out his joints very quickly. Thus he didn't get the standard two full years of immuno treatment. He was only getting the immunos for a few months, and it hammered his joints seriously so quickly that they stopped them quickly. However, even with the very short immuno treatment, it so far seems to have saved his life. I think his initial start of his melanoma was roughly 4ish years ago. I actually do not know his age, but would guess he's in his 40's or 50's.

September 26
A MyMelanomaTeam Member

Thanks for your help. All of this is scary! My husband has decided to go ahead with the infusions—starting next week.
We only hope it helps and less side effects.

September 18
A MyMelanomaTeam Member

Thanks to the ones who have replied to my question concerning my husband starting the immunotherapy with Nivolumab/ipilmumab. He had his first infusion 6 days ago and is doing well so far 🤞
He has loss of appetite, fatigue and some minor joint pain from the other 3 infusions with Keytruda before— but nothing new as of now. He was diagnosed with metastatic melanoma 5 months ago.

September 30
A MyMelanomaTeam Member

Sorry never had prayers your way

September 30

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