A walk through Yervoy

When people hear cancer treatment, they immediately think chemotherapy or radiation, however, that treatment regime isn’t the one of first choice for melanoma. A little research shows that  interferon or interleukin-2 are treatment options over radiation or chemotherapy, especially when the melanoma has metastasized to lymph nodes before diagnosis – like mine. However, when my oncologist presented the option of participating in a clinical trial to me with one arm of the trial being interferon, he told me he won’t use interferon for treating melanoma because of its severe side-effects. If I would have been randomized into that arm, he would immediately have prescribed an anti-depressant.

Having a one-in-three chance of getting interferon for the trial was extremely scary, but a little less so than dying. And while I thankfully cannot tell you what the interferon side effects are like, I can share the side-effects of ipilimumab (ipi) or Yervoy for anyone who may be facing that treatment, or for anyone who just wants to know more about melanoma and its treatment.

While patients receiving chemotherapy always lose their hair or, if undergoing radiation, get burns, the extent of side-effects from ipi vary somewhat. Nurses at the Regional Cancer Center in Mukwonago told me patients they’ve seen on Yervoy handled it well. Drug literature provides a long list of possible side-effects, but the ones most likely to be expected are headaches, muscle pain, and fatigue like you’ve never know before.

An infusion (at least for the trial) of ipi takes 90 minutes. While you sit with the immunotherapy drug dripping into your veins, you may start to feel a fog come over you about halfway through the infusion. Fatigue begins to settle in, concentration becomes harder, and an odd, almost out-of-body feeling that is hard to explain takes over – at least that has been my experience.

The best thing to do after a treatment is simply to go bed. Trying to do much of anything will leave you feeling like you’ve tried climbing a mountain and the thinning oxygen level took a toll. Rest, sleep and water – as much as you can push down – are the best remedies for recovery.

In the first phase of the clinical trial, the infusion phase, there was barely time to recover from one treatment before the next slammed me on my tail again. I felt accomplished when I could work four hours without needing to rest and even more accomplished when my naps to get through the day shrunk from two hours to an hour or less.

Mouth sores are best nipped in the bud the second any soreness is noticed. A mixture of salt and baking soda in water helps or just rinsing with mouthwash. Oral hygiene has never been a better friend than during treatment. In the first week or two after a treatment, I experienced some occasional abdominal cramping, which by instinct I tried rubbing out – not that it helped. Nausea, for me, was managed with small, frequent meals, being cautious of what I ate. However, I experienced intense headaches, like a vice squeezing my head at the temples. My jaws stiffened with pain feeling like I had clenched my teeth for weeks. Neck pain became my arch-enemy with burning pain every minute I sat at work, unless I found precisely the right angle for holding my head that would ease the pain.

I refused to stop exercising during treatment, not wanting to get out of shape, but that came at a cost, since increased muscle pain seems to be a common ipi side-effect. This isn’t the time to push too hard or try a new workout routine. Keep moving; exercise, but go slow and easy. Listen intently to what your body tells you for if you don’t, it will scream at you in ways you never imagined. The ipi muscle pain isn’t so much pain as a searing burn. It’s not fun.

Since I ended the infusion phase of the trial 12 weeks ago, the farther out I got from that last treatment, the better I felt, and the more I dreaded the next phase. My head cleared, headaches and neck pain magically disappeared, muscle pain lessened, my appetite returned. With the first treatment in the maintenance phase completed yesterday, the fatigue, headaches, mouth sores, difficulty in concentrating, and nausea taunt me again. Hopefully I’ve learned my lesson regarding muscle pain and will ease my way through these treatments and still maintain my fitness.

Yervoy or ipilimumab treatment isn’t a walk in the park, but from what I’ve heard and read, it holds more promise with less harsh side-effects than most treatments out there. This clinical trial is a double bonus, providing me the opportunity to receive a promising melanoma treatment and help researchers in the process. I can’t think of a bigger blessing.

I have three more treatments to go in this trial, stretching out at 12-week intervals and ending on July 30, 2014. While my head may want to celebrate on that day, my body won’t be ready until a couple of weeks later. From what I understand, beyond that, I can be going through scans for up to 15 years through the trial. As my oncologist said, I’ll be glowing in the dark by then, but it means I’ve gotten 15 years that six months ago I wasn’t sure I would have.

Annette

I met Annette three months before she died. In relationship categories we were acquaintances bonded through cancer. I took a photo of her by the Batmobile with Batman and Robin during a National Night Out event. All I can tell you about her is she liked photography and cars and was battling brain cancer.

She knew I was in the midst of treatment for melanoma from reading my column in the paper. When she told me she wanted to submit photos from events I couldn’t make it to, all I could think was, “You are probably dealing with more than I am,” yet I sensed it was something she really wanted.

She sent me a number of photos from a couple of different events and said we should meet sometime for coffee. But she also talked to her mother about our meeting and invited me up north where her mother lived to relax. It’s beautiful up there – a great place to take photos she told me. She barely knew me yet she and her mom would have opened their home to me.

I saw Annette once as I was going in for a treatment over the summer – or at least I thought it was her. I emailed her and confirmed that yes it was. She had been there for something to help determine if her current treatment was working. She said maybe we could meet for coffee after she finished her treatment.

I hadn’t heard from Annette since probably the end of August. The other morning I woke and thought I should email her to see how she was doing. That day at work I found her death notice in the paper. She passed away Oct. 30 at the age of 50.

Although I never checked to see if the editor used any of Annette’s photos, I know the photo that mattered most to her was the shot I took of her with Batman and Robin. It was one of the few times our editor in chief lifted the ban on distributing photos and allowed me to send the image to her. Her husband had cut off Batman’s and Robin’s heads when he took the photo. “I knew he would do that,” she told me. She said her mother would love that picture.

Although I barely knew Annette, knowing she lost her battle to cancer slapped me alongside the head. It’s one more life claimed by this dread disease. As a fellow cancer patient, part of me feels lucky my treatment is going well, but part of me takes note of cancer’s viciousness and sees again that we can never take our days on Earth for granted.

Rest in peace Annette. Your battle is over. I bet you are taking some amazing photos in heaven and riding in a beautiful, shiny, classic car. I raise my cup of coffee to you.