Tim’s Story

Site created on April 25, 2019

Thank you for visiting our story in our fight against Tim’s metastatic melanoma. This journal covers Tim's fight from early 2019, when the disease was diagnosed, to December 2020, when Tim had his second clear PET scan and immunotherapy was paused (and we hope, finished).


This story might be of interest in other patients and their loved ones who are starting their own journeys. In spite of some severe side-effects, Tim had a strong favorable response to the immunotherapy and surgery when at times it seemed like a very bleak outlook. Every patient is different and no one knows what the future brings to any of us, but we hope you find it interesting and helpful.


Tim and Penny xxx

Kindness. Loving support. Humility.

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IMMUNE CHECKPOINT INHIBITORS (from WebMD.com).

To keep you healthy, your immune system has to spot invading molecules like bacteria and viruses. It also has to know which of your own cells not to attack. To keep control, your immune system has molecular brakes called checkpoints. Cancer cells sometimes take advantage of them by turning them on or off so they can hide. Immune checkpoint inhibitors are drugs designed to release these brakes and let your immune system do its job. They include:

PD-1 / PD-L1 INHIBITORS target checkpoints called PD-1 or PD-L1 that are found on T cells in your immune system. These inhibitors treat melanoma, non-small-cell lung cancer, kidney cancer and several others cancer types.

CTLA-4 INHIBITORS  turn off a checkpoint called CTLA-4, which is also found on T cells. These inhibitors are used for melanoma, colorectal, and certain other cancer types.

Since these drugs rev up your immune system, they can cause a range of side effects, including fatigue, cough, nausea, loss of appetite, rash, and problems in your lungs, kidneys, intestines, liver, or other organs.

Newest Update

Journal entry by Timothy Burling

Today was my last scheduled infusion. They don't ring a bell  any more,  but I did get a lovely cake to take home with some non alcoholic sparkling wine (nice touch!).

If the cancer returns, then I'll be back, otherwise no more immunotherapy!

My infusion nurse today,  Christine, was also the nurse at my first infusion back in March 2019 and several times in between. It was an emotional moment when I said goodbye to her and her boss, Moira, from Dublin. They are very kind.

Earlier, my oncologist, Dr B, had reviewed my scan results which showed no sign of disease. She was positively giddy during the zoom call.

The plan now is to have quarterly scans during 2021 and take it from there. She was cautiously optimistic about how things might go in the future. The treatment is so new that they only have a remission track record for about a five year period, but it is promising.

A huge thanks to my wonderful care team at Dana Farber, and to my wonderful fiancee, Penny, who's been a tower of strength during this last 20 tough months. And to my friend Michael who's given me great, patient advice.

I'm headed back to the UK in one week's time, and I can't wait to see Pen and the boys, my parents and Simon and Jane.

Thanks for reading and supporting. It means the world. And Merry Christmas and a safe and healthy 2021 to you all.

Signing off, 

Tim

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