New Keytruda Protocol

Back on October 4th, 2019 I received my very first dose of Keytruda. For the following two years, I received my infusion every 3 weeks with great success. The symptoms were minimal if I had any at all, and within two years I was happy to read my scans showed there were no signs of metastatic disease in my body.

Unfortunately, for a patient who is Stage IV and had the disease spread to lymph nodes, I'm not a candidate to stop treatment even with clear scans.

My immunotherapy is the only thing that ensures my immune system continues to keep my cancer at bay. But my oncologist had a new trick up her sleeve that would allow me to continue my lifelong maintenance treatment, while also giving me some breathing room between treatments.

The new Keytruda protocol

In April of 2020, the FDA approved a new dosing regimen for Keytruda. Instead of 200mg every three weeks, patients can now receive 400mg every six weeks!

We didn't broach the idea of trying the new dosing amount last year because we wanted more data on patient symptoms and if it had any adverse reactions in bladder cancer patients specifically. Also, at the height of the pandemic, we didn't want to try something new that may land me in the hospital.

Deciding to make the change

As I reached stable scans and then no evidence of disease while having no symptoms in relation to my infusion we decided now was the time to try the new 400mg dose and longer time between infusions.

I didn't know any other patients who were on the new double dose, and I would be a first for my oncologist as well, so we went into this a little blind and hoping for the best.

How did it go?

Well, I was initially surprised to learn my infusion time was no longer with the larger dose. The 400 mg of Keytruda is still infused over a 30-minute time period. It was explained to me as just a larger drug to saline ratio.

After my infusion, I felt fine. I typically do not notice any side effects until later in the evening or the next day if there will be any. The following day I noticed some fatigue, but that really was the only symptom I could track.

With such a favorable experience I received the green light to enjoy six full weeks away from the cancer center before my next infusion. It would officially be the longest span of time out of a hospital since the day I was diagnosed.

My experience with the new treatment

I now have two cycles under my belt at the higher dose and longer intervals between treatments. It has been such a relief to be away from the cancer center for longer periods of time and fewer needle pokes have been fantastic. As long as I continue to respond well, this will be my course of treatment for the foreseeable future.

If you are currently being treated with Keytruda and have responded well to treatment with minimal side effects, it is worth discussing with your medical team the option of trying to new dosing protocol. Tell us about your experience in the comments below, or share your story with the community.