Hi all   A bit of an update - I posted in late '17 and '18 after going through chemo radiation for a T4N2cM0 base of tongue SCC P16+.  A few battles along the way but on the whole I've had a better outcome than most and my new normal is totally livable.  Usual issues around swallowing dry foods and a little persistent pain, but nothing that gets in the way of life.   So, 18 months after end of treatment I'm thinking we've nailed the Big C - but a fortnight ago a biopsy of a lump low in my neck showed up SCC cells!! :-/  This was a little lump smaller than a pea, found at the ENT clinic last December and CT scanned twice since since with all looking fine.  Nobody was worried about it but they decided to do a FNA biopsy "just to eliminate the possibilities".   I'm booked in for a neck dissection in a couple of weeks to strip the lymph system from left side of my neck, some thing I hoped to avoid...   I'll let you know how I go - my main message is to remain vigilant and keep pestering the doctors if you aren't sure about something.  Before my original diagnosis I was mis-diagnosed by specialists for a year, this time I was re-assured all was okay for 6 months - both times turned out to be SCC.   Shane ... View more

Hi Maurie You've got a tough couple of months ahead but fight hard, follow their advise and you’ll get through okay. Your doctor can prescribe Somac (pantoprazole) to control the reflux, you definitely want it sorted before the mucositis starts to flare up in a week or two.   Dont be afraid to double up on coloxyl to ease the constipation, another one to resolve before they put you on opiates for throat pain as they also bind you up. I had Cisplatin so can’t offer much advice on your chemo drug. Wishing you an easy treatment and a good outcome Shane ... View more

Really great summary and fantasitc advice!!   You are so right - the post-treatment 2 months is the worst, extending out to 6 months which is when I could finally start to swallow soft solids and get my PEG removed. In terms of distraction, I'm one of those sickos who like to immerse myself in my work and as  an engineer I was fortunate to have plenty of desk top tasks to do working from home.  Despite having full income protection insurance cover I kept in contact with work as much as I was capable, dropping down to about 1/3 of regular hours at its worst (other than a week in hospital 2 months after treatment due to a secondary throat infection).   I couldn't attend to site work due to the high level of opiates in my system and I always had a colleague peer review my reports in case chemo-brain effected the work.  I also gave my workmates licence to tell me to pack it in if I was getting too out of (mental) shape - participating in teleconferences regularly really helped me maintain some social contact and diversify my thoughts/conversations away from health issues.  If you and your doctor think you're up to maintaining some work contact I wholly endorse it.   I'm now at treatment+14 months.  All scans are clear other than a little lymph node under my collar bone that has hardened and grown - so not worry free but almost back to full strenght and fitness.  Dry mouth and other swallowing issues take the edge of meal time enjoyment but its not so bad (compared to the option of no treatment).   One other thing I'd really like to reinforce from earlier posts - take on any trials you are offered and able to participate in!!  I signed up to 3 including immunotherapy (Ketruda / pembrolizimab) - the treatment aftercare tail goes for a lot longer and you are offered a lot more support by the trial team long after the regular cancer care services taper off.  If you are fortunate to get the active drug it can also improve your outcomes - a course of Pembro treatment costs nearly $180k if you fund it yourself and you might get it for free - early indications are that it adds a lot of percentage points to your 5-year survival probability.   Fight hard and keep as well as you can. ... View more

Hi Kerrie, Sorry I can only respond briefly as I’m overseas with limited data, I’ll contact you again when in a WiFi area. Regards Shane ... View more

Hey April, thank you :-)   Yes I thought it a worthwhile thing to do... originally when being diagnosed I contemplated writing an article to a magazine or similar given the HPV link was not well known, but about that time a few articles came out so I didn’t get to it.  I’m still surprised when talking to people about my experience that there is such little knowledge about the connection, particularly amongst the age group most likely to have symptoms to monitor, over 40’s.   I recently had the final immunotherapy treatment and follow up CT, just over a year since diagnosis.  Still all clear which is great, and I’m so glad to have had opportunity to participate in the trial.  Not just to get $200k of drugs for free, but to get an extra 10% survival chance and lots more follow up care.  I’ll have 3 monthly CT scans and other tests until year 3 which gives me a lot of confidence that any reoccurrence will be found early - compared to 2 years of mis diagnosis in the past that led me to being Stage 4 before identification of cancer.   Last November we were planned to go to Italy for a month’s holiday but had to postpone due to my treatment, but now we are finally here!! :-). I’m writing this from Rome after having already toured Milan, Cinque Terre and Florence.  Next is a cruise and Venice, Croatia and more.  I’m so thankful and this trip means a lot more than it would have if I had of come before experience my cancer journey.  Unfortunately I still can’t enjoy all of the great food - anything on bread (including pizza) is still difficult to swallow due to a dry mouth and treatment damage to muscles (my tumour was in base of tongue) but there is still lots of great tastes to enjoy (I’m lucky to have regained taste).  Unfortunately wine is also only to be sipped just yet too.   My main message isn’t to boast but to reinforce that there is a great life still to be had after cancer treatment.  While in the midst of it all you can feel so low and that the end is never going to arrive, but after only a little over year I’m starting to hit my stride again.   Shane ... View more

Hi all   The show that I mentioned was on last night, it gives some insight into HPV caused HNC and some research to get earlier detection.   Check it out at    https://www.sbs.com.au/news/the-feed/oral-sex-and-deep-kissing-linked-to-increase-in-hpv-positive-head-and-neck-cancer_1   Shane ... View more

PS Vinnie - I'm a year out and really starting to get on top of things, though I was at my lowest at weeks 4 to 8 after treatment ended (35x radiation and 3x high dose chemo). I was asked to be a part of this SBS special that you might find interesting.   https://www.sbs.com.au/news/the-feed/oral-sex-and-deep-kissing-linked-to-increase-in-hpv-positive-head-and-neck-cancer_1 Shane ... View more

Hey Vinnie, sounds like you are doing really well to be eating a week out from treatment, you must be a tough bugger. Well done and I hope you keep ahead of the side effects. ... View more

Hi all, its been a while since I've been on here, the recent flurry of posts on this post thread has dragged me back in.   At my last installment I was due for my 3 months CT/PET scan - results for that were that the tumour had havled in size to ~14mm.  I was doing it pretty tough in other areas around then, a lot of pain constantly and almost fully reliant on the PEG.   I plateaued for about 4 months and it wasn't until April this year that I started to claw out of the side effect hole.  They wouldn't remove the PEG until I could demonstrate I didn't need it, so I started drinking the Fortisip (ewk!) until I get move to smoothies then mashed food, etc.  I had some great friends who had twin babies and they'd knock me up extra batches of home made baby food that was great.  During this period my hair grew back, although shaving remains almost unnecessary to this day.  Peripheral neuropathy set in that made walking awkward and very little grip strength, an MRI showed no cause, but luckily it slowly subsided over 6 months so now I just have a little numbness in my pinkies.  Tinnitus has also got a little better.   By the 6 month scan the tumours and lymph nodes were at 0mm!!!  All signs were gone.  The specialists were also impressed by how supple my neck tissue was with little woodiness or stiffness.  I could swallow tablets, so off the MS Contin solution and back onto Targin, and by then I was back to 2x 20mg per day.  Pasta and mince meals were possible although a lot of water and bits kept reappearing long after the meal from all the swollen voids and folds back there.   9 month scans and still clear, and eating includes steak and avo on toast - back into Hipster territory again (though without the goatie :)   Day time saliva isn't too bad, not enough for some foods without a drink in hand but good enough for most tasks.  Exercising dries me out quickly and at nights I still wake with my mouth dried and glued closed if I forget to use a Xylimelt, but a quick spray of Biotine or smear of gel gets things moving.   Through all of this I've been continuing the immunotherarpy trial, and concensus is I'm on the real deal judging by my side effects.   The 17th and last shot will be next week - it would have cost >$200k for that treatment if I was paying.  Talking of costs, we recently had our dogs crucial ligament repaired at a cost of ~$7k, my whole cancer cure including (exhobitant) hospital parking didn't come to that - we truly are blessed with a fantastic public health system, at least in the cancer care area, and despite media BS.   I also elected to work to my ability through all this, luckily my employer was flexible and I could work from home, sleep in or nap when I needed to.  I'm sure it gave me purpose and kept me focused (or distracted).  I went through period, sick of being tired and tired of feeling sick.  I don't regret that decision but I also wish I took a break because now society looks at me as cured so taking a break might not be so easily tired (or covered by income insurance).   My end story is - beating this disease takes patience and tenacity.  Time really is the healer after CR does its job.  Looks after your nutrician, do the swallowing exercises (and whatever else they throw at you) without complaint and be diligent at them.   I still gets down at times, the Dr calls it readjustment syndrome, but hopefully time will sort that out too.   Oh, and during treatment my partner would laugh that I was the oncologist's poster boy because I would follow their instructions and never complain - well she must be right because he dobbed me in for an upcoming SBS special on P16+ head and neck cancer that will be shown on The Feed in early October '18.  You can hear more of my story and that of HPV caused cancer cure research on the show.   ;-) ... View more

Hi all   Quick update on life at 3 months post treatment...   As a recap, I had T4N2cM0 base of tongue SCC that was P16+.  Basically a thumb sized tumour buried deep in my tongue muscle and lymph nodes affected on both sides of my neck   We got through the infamous few weeks of hell after last of treatment, a period which included my 50th birthday and Christmas.  Not much to do but keep my head down, maintain nutrition and deal with the side effects.   Come January I started to steadily improve for a few weeks and ended up virtually independent of my PEG, eating selective foods for most meals with the help of an Endone or Panadol (sometimes both).  Skin cleared up really well, mucositis was present and still caused some gagging through the night.  Tinnitus unfortunately ever present but not enough to disturb sleep, mainly a problem for communication through the day in the car or noisy locations.  Dry mouth but a hint of taste returning which helped at meal time, nausea almost gone and tiredness also less of an issue.  Dropped off Targin an only needed adhoc pain relief for meals.  Head hair and whiskers even starting to reemerge.  Started to work part time from home.   Then the wheels fell off...  For a fortnight at end of January I felt things sliding away.  The general rawness of mucositis and radiation damage was replaced by intense local pain at my tumour site (base of tongue).  As mucositis disappeared it was replaced my an extremely dry mouth, especially through the night and the usuals like Xylimelts and Biotene didn't offer much help.  My radioligist and medical oncologist both examined me sympathetically but put it down to a late bloom of chemo-rad side effects.  Back on 20/10 Targin for pain, plus the laxatives and other meds that go with ramping up pain relief.  Also Diozole in case it was a type of thrush infection.   By the Australia Day long weekend I was really suffering, worse than at any time in or after treatment.  My throat had swollen internally to the point I was waking up in the night unable to breath by nose and tight by mouth - lympodaema (swelling) of my face and neck to the point I'd lost a defined chin - difficult to swallow water without aspiration which made it nearly impossible to swallow tablets.  On morning of Sunday 28th Jan I'd had enough after a sleepless night of laboured breathing and pain, went to Emergency at my treating hospital (RBWH) where the ENT Registrar admitted me on a course of steriods and two different anti-biotics, all by IV - I ended up inpatient for a week until things improved enough to start eating again and go home.   A tapering course of drugs ended after a week and the symptoms started to flare up again - but they quickly put me back onto oral equivalent medication that has me stabilised but still a fair bit of local pain.  After a few endoscope examinations and some probing the call is - combination of my large original tumour and its location, which has since died from treatment, has caused a large hollow ulcer at back of my tongue that is slowly rebuilding with new muscle tissue and exposed nerve endings so it is easily inflammed.  This cavity easily catches food bits and is therefore susceptible to infection, and if food lodges in there its hard to flush out because of the sticky "slough" goo also present (sorry to be graphic :-).  I've stayed on PEG feeds for a fortnight to give things best chance to clear up and am definitely on the improve now, but this wasn't a set back I saw coming.   So I guess my message is, be positive and forward looking but be vigilante - if you think things aren't right be a bit pushy.  The Doctors and staff in oncology are simply amazing, facing dozens of our cases each day, but sometimes its easy to write off our symptoms as "part of the chemo radiation repair process", when I presented to the ENT team via emergency they took a different view and realised that what I was suffering was related to cancer treatment but had its own challenges, and they offered a more targetted treatment.   In two days time I go in for my 3 month CT/PET to see if I'm cured.  Unfortunately what's left of this infection may give a false positive at the tumour site but at least they can see if the lymph nodes have been cleared away and there is no other spread.   Wish me luck, I'll get back to you with how that goes    :-) ... View more