WOW. What a summer! I know it has been forever since I have posted, and I’m truly sorry for not keeping everyone up-to-date.
This summer has been filled with LOTS of highs and lows. Lots. My second (and last) infusion of the Ipi/Nivo combo was in May, and holy moly did I have side effects after that infusion. Uncontrollable nausea and vomiting, diarrhea, crazy high liver enzymes, and generally lousy feeling. My weight dropped down to almost 100 lbs because I could’ve keep anything down. They stopped treatment and put me on steroids to get my liver enzymes under control.
While on steroids, I had lots of other (scary) side effects. I developed hand tremors, arm weakness, anxiety swings, heart palpitations, crazy sweating, and really felt like I was jumping out of my skin. We thought maybe my thyroid was being attacked by the immunotherapy. Endocrine labs and MRI all came back negative. So the team figured it must be the steroids, so we should wean at a decent pace.
Once I got off steroids, I felt great! I had gained my weight back and felt totally normal (still with a newly developed caffeine sensitivity, but I can deal with that!) I had my 3 month PET scan, and everything has shrunk dramatically!! WOOHOO!! I was on cloud nine!!
Then came the conversation with the oncologist…the dreaded “what is the game plan” conversation. I knew the great news that things were looking very positive, but now what? Everything I had read said that the next probable step would be to go back on Nivo alone as maintenance. So I was expecting the conversation to lead that direction.
And I was super surprised when it didn’t. My onc was incredibly honest when he said that my earlier steroid-induced symptoms seemed very much like a central nervous system autoimmune disorder, and he was afraid that if we go down the maintenance path, we could run into some serious side effects. I knew this was a possibility, but that’s when I realized it may be more of a reality, and my mindset changed. Having worked with neurosurgeons, I have also worked with neurologically impaired patients, and that’s a terrifying proposition. I might be cancer free, but at what cost? Will I be able to walk? Feed myself? Will the tremors come back and remain this time? When the side effects were at their peak, I couldn’t hold a cup of coffee without spilling it all over the place…would that remain permanent?
Yes, this is a big gamble. NOT doing maintenance doses might mean that my melanoma comes back, bigger and badder than ever. That’s a possibility. And I’m not taking that lightly…trust me, that’s on my mind during my sleepless nights. But I’ve decided to choose quality over quantity. I’d rather live independently, be able to do the things I love, and not go back to the side effects and the possibility that they remain permanent.
Perhaps I’m also following this path because I have accepted my melanoma diagnosis. I accept I will live a shorter life because the melanoma will come back at some point in time. These are the odds, plain and simple. I have told my husband, I’d be happy to get in another 15 years and make it to his retirement. Just last year I was handed a very poor outlook on 5 years, so 15 looks darn good to me. I’ve had some pretty bad side effects, and the side effects are way worse than the cancer itself…so why push the envelope, just to get rid of some possible crumbs of cancer still hanging out?
It truly is amazing, the ups and downs we go through with treatment. The “what-ifs” we face are truly daunting. I know it’s incredibly difficult, but acceptance of my diagnosis has really helped me face some very difficult decisions. We use words and phrases like “keep fighting” and “win the battle” with our diagnosis. I will always keep fighting for myself and for others, but I must ask you, have YOU fully accepted the consequences if you lose this fight? Every battle has a winner and a loser. There is no guarantee that a valiant fight will win the battle. I’ve accepted that moving forward is the only direction to go, so I will keep fighting, but I also know that my best efforts may not be enough. I’d rather fight melanoma on another date, at another time, than the possibility of more permanent side effects from keeping up the treatment. This battle, for now, has been won. But I know the war is not over.