One Step Forward, Two Steps Back

A few weeks ago, I went for a routine follow-up appointment. At the time, I was feeling as good as I’ve been since my surgery and had no reason to believe that I had any sort of illness brewing. For me, I was finally taking steps to transition back to living a relatively “normal” life.

Unfortunately, when I met with my doctors to discuss the results, I found out that the cancer had spread to my spleen and pancreas.

Disbelief.
Shock.
Anger.
Sadness.
Fear.

A freight train full of emotions hit me all at once. My life was once again turned upside down.

The only other time that I’ve felt this way was when I was first diagnosed a year prior. This time around, my situation seemed a lot less hopeful. At Stage 4 (AKA metastasis), the tumour cells are everywhere in my body. It’s only a matter of time before they grow and latch onto my different organs.

I had a million questions, most of which I already knew the answers, but secretly hoped that I was completely wrong. At the risk of embarrassing myself, I asked them anyway.


Is there anything we can cut out?”
Of course not. It has already metastasized.  

What about radiation?
Radiation is futile when it’s everywhere. It might work when the tumour is in an isolated region- then we can focus our beams to kill off as much of the issue as possible. When it’s presumed to be everywhere, it doesn’t make sense to radiate the whole body.  

What about more chemotherapy?
Since the cancer has returned only a few months after finishing chemotherapy, there’s a good chance it means chemo hasn’t worked. We could try a different type of chemotherapy, but it’s not clear if it’ll be of any benefit.


So here it was – the 3 pillars of cancer treatment becoming pretty much useless once stomach cancer metastasis appears.

I eventually did some research and found out that the type of stomach cancer I have belonged to a subset that doesn’t respond very well to chemotherapy; however, it does respond reasonably well to immunotherapy. This type of treatment functions by boosting your immune system which helps to kill off the tumour cells, would involve a slow injection of pembrolizumab (trade name Keytruda) into the vein every 3 weeks, and would last for 2 years or until it stops working…whichever comes first.

Learning of this potentially better treatment with fewer side-effects made me hopeful. After all, in some cancers such as melanoma, the results are extremely promising; however, there was a catch…it’s not yet approved in Canada for stomach cancer. Although it’s been approved in the US since September 2017, I suspect the lack of access in Canada was due to cost.

There are only two ways of getting Keytruda in Canada:

  1. paying $10,000 per month out of pocket, or
  2. through a clinical trial.

Getting immunotherapy can be a bit tricky if you don’t have the means to pay out of pocket. With that option out of the question, I began my quest to see if being a clinical trial would be right for me. After seeking a first, second, and third opinion, I eventually got myself enrolled in a Phase I clinical trial in Toronto where I receive Keytruda and another experimental immunotherapy drug. Phase I means that the drug (the experimental one) is being tested in humans for the first time. I’ve been told that there haven’t been any major side-effects in mice, and am hoping that my body is similar enough to one of a mouse.

So far, after a few weeks of immunotherapy, I haven’t had any side-effects, not even fatigue. There are some days when I wonder whether I’m actually receiving a placebo (I’m not). This is a drastic improvement from chemotherapy, where nausea, diarrhea and fatigue was destroying my quality of life.

Time will tell whether immunotherapy is truly working. Until then, I am staying relatively active, and trying to maintain as much of my “normal” life as possible.

I will be sharing some of my thoughts and learnings about immunotherapies in weeks to come, with hopes that this information may be of help to someone who is in a similar situation.  

Stay tuned.

11 thoughts on “One Step Forward, Two Steps Back

  1. Sending you all the love and healing in the world.

    Like

  2. Karen E. Bonham-Ionson July 18, 2019 — 4:18 pm

    Following your brave posts and wishing you healing. Thank you for posting.

    Like

  3. Kelly Fitzsimmons July 18, 2019 — 4:57 pm

    Excellent blog as always, well done. Cheering for you Terrence!! ❤️💪🤗

    Kelly

    Sent by the Pony Express 🐎

    >

    Like

  4. Genevieve Noel July 18, 2019 — 5:09 pm

    Our thoughts are with you Terence. We hope that immunotherapy will help your body recover.

    There is a very interesting book by Dr. Gabor Mate called: « When the body says no ».

    Kind Regards,

    Geneviève & Maginnis

    Envoyé de mon iPhone

    >

    Like

  5. Tariq Al Fanna July 18, 2019 — 5:31 pm

    Cheering for you here Terence
    Stay strong
    Tariq

    Like

  6. Unfortunate news but beautifully written blog as always! Your strength is an inspiration to us all. I’m keeping my fingers crossed for you!

    Like

  7. Hey T-pain, thank you for sharing. Your posts are so powerful and your courage is inspiring. I am thinking of you and cheering you on from the side lines.
    – Mali

    Like

  8. Two steps back but wishing you thousands of steps ahead. You got this.

    Like

  9. Here’s to hoping the immunotherapy works. So sad to hear of the news, but hoping that things will work out.

    Like

  10. I’m sorry to hear this. Keeping you in my thoughts and cheering you on- here’s to hoping immunotherapy works!

    Like

  11. Keep strong Terence. Sending loads of positive thoughts your way!

    Like

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