Immunotherapy Part Three – Ipilimumab

After two surgeries, the oncologist wanted to start me on an immunotherapy drug called ipilimumab (trade name Verloy). Don’t you love these long drug names? No wonder the docs refer to this one as “ipi.” As far as I can figure out, each of these drugs have five syllables and a “mab” or “nab” as a last syllable. I think this one is e-pee-LIM-oo-mahb. In this case, learning to pronounce this drug name was the least of my worries.

photo patient in bed

The drug lulled me into a false sense of security. After the first two infusions, I had no side effects. I’d spent all that worry about it for nothing.

However, just before the nurse set me up for the third infusion, she noticed a rash on my ankle. She scolded me because I hadn’t called her about it. It was the first sign of an allergic reaction. To be honest, I hadn’t carefully read the doctor’s instructions about this. She ended treatment.

Unfortunately, this wasn’t the end of it.  For the next six weeks, I suffered with a horrible rash over my entire body, edema, vomiting, diarrhea, weakness, and brain fog. In retrospect, the brain fog was the worst because I forgot to take the medications the doc provided to combat these symptoms.

When I finally recovered, the doc referred me to a melanoma specialist, who decided I needed another three months of recovery time. Plus, he wanted to see if the ipi was still doing its tumor-shrinking thing. Alas, that was not the case.

Although these drugs have a wonderful track record, the docs can’t predict whether a particular patient will respond to the drug without side effects. My oncologist knew I had the BRAF gene which made treatment potentially effective. In my case, the cure seemed worse than the disease.

The medical field continues to develop more of these drugs, some of which have fewer side effects and better results. I hope medicine will also determine a patient’s response more accurately. I don’t want anyone to suffer what I did.

Increasing the melanoma survival rate from six to nine months to ten to twelve years is a wonderful achievement, but thousands are waiting for complete eradication. Fortunately for me, my current treatment resulted in no tumors visible in the latest CT scan. Pray that the drug will be completely effective and I can beat the survival-rate odds. Thanks.

5 thoughts on “Immunotherapy Part Three – Ipilimumab

  1. Thanks for taking the time to write this, I have just started a trial taking Ipilimumab and Nivolumab to treat prostate cancer and found it very useful to hear about your side effects
    I have only had one treatment so far and have been congratulating myself on breezing through it.
    Your story is a timely reminder that it is still early days for me and I need to remain vigilant.
    Hope you are well.

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