Unless I’ve miscounted, I’ve done 37 rounds of chemo for my colon cancer treatment – and all but 5 of them were with Vectibix. I’ve used it with FOLFOX and FOLFIRI; with and without FUDR in my HAI pump; and alone with just 5FU.

 

At some point, when we looked back at which combinations did and didn’t drive great results on my scans, it became clear to both me and my oncologists: like it or not, Vectibix seemed to be the miracle drug for me.

 

Unfortunately, Vectibix is no easy addition to a chemo regimen. I used to call it Vectibitch; which made one oncologist laugh and the other one frown. Among other side effects (and I seem to have gotten most of the most common ones), it causes a rash in 90% of patients.

 

One oncologist with whom I met made it sound like nothing: You may get a rash; and if you do, we will treat it. That sounded fine to me!

 

But the rash was far and away the worst side effect I experienced: physically painful, impacting every part of my face including the interior of my eyelids – and it made me feel ashamed of my physical appearance, as if I was a teenager who had severe acne and hadn’t taken the time to learn how to manage it.

 

In fact, many doctors do not prescribe it to their younger patients who are RAS-wild type and could benefit, knowing just how devastating it can be emotionally – robbing those patients at a higher likelihood of curative treatment.

 

My rash was so awful, I spent hours scouring the internet looking for information about how to make the drug I believe saved my life more tolerable, and here’s what I now recommend:

• Assume you will get a rash if you are on Vectibix (or Erbitux): 90% of patients do

• Request to be put prophylactically on antibiotics two weeks ahead of time – it is far easier to prevent a rash than it is to treat it

• If your oncologist indicates that they want to see if a rash shows up so that they “know Vectibix is working,” tell them you know the research they are citing is based on a clinical trial of patients who used Vectibix alone versus part of a protocol – and that myth has since been disproven

• Use sunscreen, hats, and high-quality moisturizer religiously – your dermatologist may recommend Cerave; but I found Luna Delgado Botanicals (winter), True Botanicals, and La Mer serums more effective when the rash was severe

• You will likely want a topical steroid cream on hand to keep the rash at bay; I relied on increasingly stronger creams twice a day when my rash was at its worst.

• Don't be afraid to request a consult with an oncodermatologist the moment you start to see skin issues, rash or otherwise – mine, Dr Jennifer Choi, was a critical part of my care team

• I tried a lot different kinds of full coverage makeup to hide my rash, and most of it dried my skin and exacerbated the rash. My aunt, a Bobbi Brown consultant, finally gave me a bottle of La Mer foundation – and this is what I continue to rely on today. It is expensive, but it gave both the coverage and the moisture I needed.

 

When I resumed Vectibix after a break, I tried something new – and while I’m just a sample size of one, I did two things differently that I think it might be worth other patients trying

• First, I took the antibiotics two weeks ahead of starting my colon cancer treatment; previously I had started only after the rash occurred

• Second, during the hour-long infusion, I borrowed a trick from cold cap therapy and iced my face. I would bring ice packs with me in a cooler, sometimes asking the nurses to bring the kind you break that last 20 minutes or so. We experimented with the length of the infusion – and maintaining an hour-long infusion versus shortening the time frame seemed to work better.

 

I honestly don’t know which of these helped my rash more, or if they both did; but after 5 rounds of Vectibix the second time around, I had just a few spots popping up, and I only needed to use steroid cream once or twice a week. With makeup, my skin looked perfect, but most days I hit Zoom with a bare face.

 

If you try (or have tried) icing and find it works for you – would you please let me know?

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I’m hoping to have discovered something that will make it more likely that more patients can benefit from the drug that I truly believe made all the difference for me.