Team Doug Report #12

 Cancer, I’m told, is like surfing: one moment you’re flying in the wind, riding the world’s longest wave; the next your face has been slammed into the bottom and you’re spitting sand, gasping for air. Then you struggle up to the surface and soon you’re riding a crest again. This month has been a prime example.

Headlines

-        Vocal cord repair injection is done and was successful. I’m doing exercises under expert direction to improve my eating and speech.

-        The 10-session radiation therapy seems to have worked to stabilise the tumours in my face and neck.

-        Against our expectations, the non-chemo treatments over the past month have reduced  the secondary tumours in my bones and liver. Woo hoo! This treatment will continue, alongside a new “kinder, gentler” chemo program.

1.     Getting my voice back

On May 3 a surgeon injected some cosmetic filler into my flappy right vocal cord, which restored my voice to a soft rasp – much improved over the previous soft whisper. Last week we met with a speech pathologist, Dr Danielle Stone, who did an extensive examination and sent me home with a bunch of exercises to strengthen my tongue and vocal cords. It’s all intended to improve my eating efficiency and and my speech. I was really encouraged by that meeting. I’ll have a follow-up with her in a few weeks.

2.     Stabilising my facial issues

I have some – probably permanent -- nerve damage in my face and mouth due to the pressure of the tumours on my cranial nerves. The idea was to hit the tumours with targeted radiation so it doesn’t get any worse. I had 10 sessions of radiation therapy over consecutive week-days from May 1-14.

My treatment is called volumetric modulated arc radiation therapy (VMAT) or Rapid Arc. It’s been around since 2007. The machine, called a medical linear accelerator (LINAC), accelerates a beam of electrons to near-light speed and shoots it at a tungsten plate, producing a beam of photons (light!) in the form of X-rays. It aims very focussed beams of varying intensities at a tumor as the machine rotates around you. The idea is to kill the tumour cells and avoid the healthy tissue around it. Each of my sessions took 7 minutes and I really didn't feel anything.

I’ve made a short video of a session, so you can see it in real time.

 

 

The side-effects were fatigue and nausea. Unfortunately the nausea hit pretty hard on the second weekend, when the clinic was closed. I had three days without any food or drink. My existing anti-nauseants didn’t work. On the Monday my nurse organised a course of steroids which quickly settled my stomach. They also dripped in a litre of fluids to rehydrate me. At the end of the treatment program – radiation is cumulative – I also had a very sore throat. Simple painkillers didn’t do the trick and my crack medical team got me on some temporary opioids that worked well.  All this nastiness has improved naturally over the past two weeks and I no longer need any meds.

3.     Stopping the cancer spreading

What with all the time focussing on local radiation therapy on my face and neck, not much was being done to slow the growth of my other bone-resident tumours. A month ago, based on one of my biopsy markers, Nick, my oncologist, started me on a hormone treatment which suppresses my body's production of testosterone. It's not chemotherapy but he thought it might slow things down a bit while we waited for the radiation therapy to do its thing. He also put me on a drug called denosumab (also not chemo) last month. It strengthens my bones so that the existing secondary growths in my vertebrae don't start breaking down the bones.

This week, after a month of these treatments, Nick gave us the results of Tuesday's (May 28) PET scan. As we’d hoped, the radiation therapy has been effective in reducing the primary tumours in my face & neck. This should stop the local nerve damage and let me focus on exercise to improve my eating and speaking.

We’d been expecting continued spread of the cancer and expecting to launch into a heavy new chemo program called CAP: strong stuff with nasty side-effects. But the news we got was the polar opposite of what we expected. The cancer growth has slowed down significantly everywhere! And there's no new spread of the disease! Dianne & I could hardly believe it -- we were expecting a continued decline. The hormone therapy is working!

Based on this success, Nick has discarded the idea of CAP. He’s prescribing a gentler, more gradual chemo program. As he said, "You don't have to suffer to get success." The drug, paclitaxel, is in a class of drugs called taxanes, agents that inhibit the formation of secondary tumours. Starting next Wednesday (June 5), I'll have an infusion of it each week for three weeks, then a week off, the cycle to be repeated 4-6 times. There will be side effects but, let's hope, manageable ones. And I'll continue the hormone and bone-strengthening therapies.

We had a nice pinot grigio with our pasta dinner that night to celebrate the news. I'll take good news whenever I can get it!

So right now we are very encouraged by my recent test results and highly optimistic about the next stage of my treatment.

Meanwhile, we’re getting out for walks, a movie, and lunches when we can, enjoying the fabulous Northern Beaches.

You’ll notice that I say “we” a lot in this report. I can’t express my deepest thanks and love to Dianne for her care and partnership through all these changes, riding the waves with me.

It’s great to hear from all of you. Please understand that, depending how I’m feeling, I may not respond to your notes. But I really do value all your messages of encouragement.

See you all in my next post. As always, you can read my earlier posts on this page.