BAD REACTIONS

April 11, 2025

This is a very long update, so grab a snack or a beverage and settle in for a bit of a journey.

I had my second immunotherapy treatment yesterday, and ended up on a bad trip, as we used to say when I was a teenager. Before I get to all that, let me back track a little.

For the most part, my body’s reaction to the first treatment wasn’t bad, as compared to the side effects from the previous two cancer meds. I definitely had a lot of fatigue and had to lie down every day. And the arthritis flare ups were and are horrible, worst I’ve had in many years. lots of pain, inflammation, and much fear of losing range of motion. But other than that, No nausea or diarrhea, no loss of appetite. I’ve been eating pretty well, but I am still losing weight. This still doesn’t bother me at all, as I’m pretty close to where I actually should be. If I go beyond that, then I’ll have to worry. Maybe.

I saw Dr. Z on Wednesday and had my monthly labs done that day. He’s checking for several new things, including thyroid, as apparently, this treatment can cause problems with the thyroid. The doctor was very concerned about the arthritis and offered to give me pain pills to help manage the symptoms. I refused. Frankly, I’m terrified of pain pills. I had to have a nurse convince me that using pain meds after joint replacement surgery would not make me an addict, and I never used them as often or as many as prescribed, never finished the at home prescriptions. It seems these days we hear all the time about adults who have a condition that causes them great pain, and how they became addicted. So, far, my primary care doctor and my sister do not believe I would allow that to happen, but I’m still afraid of pain meds, and besides, it doesn’t treat the inflammation which actually causes the pain. Anyway, Dr. Z wants me to have a scan in three weeks, and then see him on may 5. We’ll decide then if I should have the next treatment.

Now to yesterday. I started the day with a visit to my primary care doc, Dr. R, for my annual medicare wellness visit. I also needed him to fill out my medical form, as the last thing needed for my Guiding Eyes for the blind retrain application. Dr. R is an osteopath, and I consider him the best doctor I’ve had in my adult life. Before even entering the office for the visit, he’d refreshed his knowledge of my treatments and progress with the cancer. He advises a pneumonia vaccine, but he’ll check with Dr. Z first, to be sure there is no complication with my treatments. He’s like that. when he’s prescribed meds, he makes sure they are okay since I have only one kidney. He believes in treating the whole person, not just the reason someone walks in the door. He also thinks I won’t get addicted to pain meds, but everyone is letting me decide that. So, other than cancer, I’m pretty healthy. My lungs were clear and all else was fine.

Then it was on to the infusion center. I was somewhat anxious, even though I told myself that I’d already had this once, and everything should be just fine this time. My blood pressure was a little high but went down by the end. Like I said, I was anxious.

Rosie and I had stopped for lattes on the way to the center, since it’s a 45 minute drive. We had made plans to do some things after the treatment. Rosie had an errand in the area, and then we were going to get lunch at the nearby Greek restaurant. I love Greek food! We had to change our plans.

The treatment happened. First they do a lot of prep. Both the nurse and I have to wear a mask while she checks out my port. She also put a sterile drape on me before inserting the needle into the port. Two nurses go over the details of the treatment, the dosage, the time it should take and all that. Then they start the infusion. Rosie, Shani and I hung out for the 30 minutes of the treatment. This time, they didn’t keep me the extra 30 minutes to observe my reactions, and once the needle was out and the spot bandaged, we took off. And that’s when the fun began.

On the way to the car, we stopped to let Shani relieve. As we were walking to the car I started to feel cold, and by the time we were settled in the car, I was shivering. We had not refreshed our minds with the list of possible reactions and neither of us remember that shaking chills were something we should have called 9-11 about. My whole upper body, my torso, and my arms were shaking so hard, it almost felt as if they would shake right off my body. Rosie actually turned on the heat, and it was a warm day. I shivered and shook most of the way home. I’m sure Rosie and Shani were quite uncomfortable with the heater on, and even the parts of me that weren’t shivering wanted the heat off. And then I started feeling nauseated.

We ended up nixing Rosie’s errand and our lunch of yummy Greek food and heading for home as fast as we could get there. I thought about getting some hot chocolate, hoping it would warm up my insides, but with the nausea, I wasn’t sure I could handle anything in my stomach. It was best just to get home.

We almost made it! We were just at my driveway, not pulled into the garage, when the nausea swept over like the tide, and I couldn’t hold on any longer. Rosie stopped; I opened the car door. Leaning over, I could only hope I would miss the car and get the ground, as I threw my guts up. I wasn’t quite successful, and Rosie and her husband Chris had to clean part of the car yesterday. I feel bad and embarrassed about that, but Rosie eases my mind and doesn’t complain.

I went to bed right away, and Rosie went to the binder of info on Opdivo immunotherapy. Right there it said if I had shaking chills and or fever, call 9-11. Well, we didn’t know, so we hadn’t rushed across the street from the infusion center to the hospital and the ER. I called the triage line for Dr. Z’s office and got voice mail. That was at about 11:45. We had taken my temperature, and it was at 102, and then 101. In half an hour it had gone down to 99. I wasn’t shivering or nauseated anymore so I wasn’t worried. The triage nurse didn’t call back until around 2 or so. She took the details and said she’d talk to the on call doctor so they could advise for future incidents. She didn’t call back till well after 5. At that point, on call doc said I should go to the ER, since my temp had gone up to 102, but I wasn’t going to the ER. I was feeling fine, ate some ice cream for dinner, and didn’t feel like driving 40 minutes back to the hospital, to sit around for hours waiting for someone to tell me I was okay and hadn’t developed some kind of infection. I went back to bed, didn’t sleep too well, but still felt fine.

So, that’s where things are right now. I’m tired from not sleeping well. There is an extra blanket on my bed, and I was just too hot. Shani was crowding me. I think she was worried and just stuck as close to me as she could most of the night. All of that made sleep hard to find. My temp is normal, and I’m not nauseated or shivering. Think I’m okay for this round. I’m leery about the next one, and I’m pretty sure they won’t let us trot off right after the infusion, when they hear what happened to me. I’m just glad that whatever happened to me yesterday seems to be done. I’m somewhat scared or worried for the future, but that’s a kind of every day thing.