Great to hear you're doing so well Angie!   Yes tinnitus is a curse, they blamed mine on chemo and it did get better over time, though background noise still makes it hard to join in conversations in public places.   Keep safe and well (: ... View more

Hey Angieh   Glad you're climbing out of the treatment hole, you'll be running again soon if you haven't already started.  Before I got sidelined I mainly kept fit by competitive surfski paddling, with a few 5k runs thrown in each week - 3 years of atrophy and deconditioning makes the prospect of getting to that level of fitness again a hard thing to contemplate so I really encourage you to get out there as soon as you can to hold onto whatever fitness and strength you can.  Lots of articles out there about the benefits of exercise to cancer treatment and recovery + the mental benefits. So far immunotherapy is treating me well in terms of side effects, I have a CT scan next month to see if the new cancer is receding or not.   Cheers Shane ... View more

Hi Angieh   I guess by now you are through the 7 weeks and cancer and deep in the worst week, hopefully things are going well for you.   I smiled at your description, after two lots of radiation with chemo and some surgery I certainly notice the aging effect it has so it good to hear things must be holding up okay.  My wife also got a kick out of thinking she looks like a runner as she doesn't feel great about letting some things slide since cancer got our lives derailed over the last few years.   I'm back in there Monday for another round of immunotherapy, part of the palliative treatment program I'm now that I've had a second recurrence with no cure likely.   Keep fighting, you're nearly there, it gets easier from here!! ... View more

Hi Angie   The Strata is meant to be applied commencing a couple of weeks before treatment and for at least 4 weeks after completion (or until skin is back to normal).  It is applied twice daily on the areas affected by radiation, but this is not always easy to recognise early on.   I asked my radiation oncologist to show me the treatment planning images that show where the radiation will be targetted, it is really important to recognise that you will get burns where it passes through your skin where entering your body, and also where it passes back out through your skin on the other side.  In my second round of treatment I wasn't initially getting it onto all the area at back of my neck and shoulder where radiation was exiting and it started to get dry and flaky until I noticed.   A little Strata goes a long way, its not meant to go on like other moisturiser that soak into your skins, Strata forms a layer on top of your skin to trap in natural moisture and oils and it only take a little to achieve this.  When you start to get sore and tender with dry skin try not to rub the strata in circles as this will aggravate the situation.  All the hard little skin flakes mix with the ointment to make an abrasive paste.   I used to squeeze some on my fingers and wipe it in a line across middle of the treatment area and then gently spread it in both directions away from that line using a wiping motion.   Your cancer care nurses should be able to help with some pointer - perhaps if your hospital doesn't use Strata they aren't sure what advice to give you.  RBWH (Brisbane) now use it as their standard care after they did a clinical trial to prove its effectiveness, so they could give me good advice.   Hope that helps, I cover it a little in my youtube vlog as well  https://youtu.be/lg0CQV1RhqQ    Hope all goes well for you through treatment and beyond Shane ... View more

Hi all, I'm really humbled by the kind and caring messages you offered.   My oncologists' team were really disappointed by the news and one was visibly upset, we've been through a lot together and my combination of age, fitness and P16+ status were supposed to set the stage for a cure.  But as we know this insidious disease doesn't follow such rules.   I've been put straight onto Nivolumab immunotherapy and started Monday - we were lucky that this recurrence was found within 6 months of my last chemo by a matter of days which means we get PBS funding and treatment will be bulk billed, if it was found later by a week or two we'd have the awful decision whether to self-fund the $10k/month or go without.  Nivolumab was chosen because my cancer may have become chemo tolerant and we want to avoid the toxicity of long term chemo exposure (because I still plan to be around a long time ;-).  I was also getting strong reactions to the Pembrolizumab during the clinical trial and apparently that is a sign that immunotherapy is likely to be effective.   It will be a monthly IV treatment, so not regular enough to need a portacath or PICC line, something I'm very happy about.  They still have trouble getting canulas to hold in my veins as they've hardened from treatment, but its worth persevering to avoid a permanent device that stops me swimming or exercising.   Plan is another PET scan in 3-4 months to gauge whether treatment is controlling spread, from there decide whether treatment is maintained or intensified.   Doctors won't commit to timelines this early in the peace and thanks to COVID-19 we can't get out to take advantage of the time left.  So for now I'm tapering out of work and tidying up our camping gear, we're also looking seriously at a new camper trailer!! 🙂     Our strategy is plan for the best but have a contingency if fate delivers something less.  Thankfully it looks like our income protection insurance will reopen our claim, removing one source of stress and enabling us to get out and squeeze as much from life as we can (well... after lock down anyhow).   I wasn't planning to make treatment vlogs this time, but will definitely post some videos as we celebrate living (even if it is with cancer). Thanks again for all your support.  I'll check in soon Shane ... View more

Hi all who may have followed my vlog last year.  I thought I owed you all an update for following along.   Unfortunately the news is a bit poo - last week I had my follow up PET scan and yesterday we learnt that the cancer had been quietly threading down a lymph chain behind my spine and has metastasised in my right lung.  Two rounds of radiation with chemo, immunotherapy for a year plus neck dissection surgery have failed to kill the cancer (or me) which means we've lost opportunity for a cure - next Monday I go in to discuss palliative treatment options with my oncology team.   A scary thought but something we'll face up to again - plan is to keep this cancer curse on a short leash and bring it under control sufficiently to get a few life experiences ticked off.   Keep well out there through this coronavirus craziness, I'll let you know my next steps when I learn more.   Shane ... View more

Hi Angie and Kate - I was on a trial for StrataXRT during my first round of radiation (35 x 2gray doses) and its made a big difference compared to other people on the trial using Sorbolene.  When I had my second round of treatment (35 x 1.8gray doses) I also used as it had beecome the sntadard for care at RBWH as a result of the great trial outcome.  If your hospital doesn't provide it you can buy it online, a $120 tube will get you through about 4 weeks, 3 tubes for your full treatment counting a month after the radiation doses end.   Other than that, remember a hat and cover up, but don't use sunscreen during radiation treatment because the zinc oxide can react badly to the radiation energy and make the burning worse.   Sorry I'm late to chime into this one, hopefully you're progressing well.   Shane ... View more

Sounds like he's through the worst of it now Joolz, I'm not sure if it would be harder to endure that phase as the patient or carer!  Best of luck on the 12th. Shane ... View more

Hi - I touched on radiation effects in a few vlogs, you're welcome to check them all out on my YouTube channel, the latest one can be found at  https://youtu.be/6bSK0K2bjSY   I'm about 6 weeks out of treatment now and my skin is almost back to normal in terms of burns, but I'm still very stiff which is the radiation combined with surgery scars - I'm having weekly physio to loosen things up and regain some strength in that area.  Thankfully the fatigue and other side effects are also lifting with time.   Regards Shane ... View more

Hi Kate - just saw the latest newsletter where you have highlighted my vlogs - wow, that is really great, thank you. (-: ... View more