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.
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
Hi my nickname is Boony,
Easter last year is when my saga started, woke up Easter Friday with a bulge on the right side of my neck.
At first I thought a Mozzie bite, ten days later was informed I had T2 cancer of the right tonsil and one lymph node. When Doctors found out I worked on robots and automation machinery in the packaging industry they asked if would like to have a D'vinci Robot extract my tonsil, which I nervously agreed too, (payback time for the robots) ha ha.
Well weeks later, neck dissection surgery to remove lymph nodes and robotic surgery (1 hour 5 min operation) all took place. I did not have a peg inserted because I could swallow and eat soft food through out the whole saga.
Then I went onto 33 radiation sessions with 3 bouts of cisplatin chemo thrown in with it. I reckon a week after completing these sessions the fun began.
At this moment I am a year out from all this, in January this year I was given the all clea. I have a tight neck even though I stretch millions a time a day and a burning tongue syndrome that comes and goes and annoys the c...p out of me. The right side of my tongue is slowly coming back to life, so is it nerve ends that are regrowing (I hope) that is causing this burn sensation? I am pretty fit and weigh constantly around 78kg, I am on my exercise jogger for 20 mins every morning.
One last thing, only in the morning sometimes, I wake with a dry mouth which comes good after about 5 minutes of sitting up and doing my routine Lymph neck massage.
Hello, I'm new here. I was diagnosed May last year with a rare mucous membrane cancer. Started in my sinus and spread to my left cheek. I had surgery and radiotherapy (6 weeks). I stopped eating around the end of week 4 as it was getting too painful. My radiotherapy finished in mid-August and I didn't begin eating again until September. I'm now doing OK (still not putting weight on) but a recent issue is food going into my nose when I eat and me having to gently blow it out (I have a hole in the roof of my mouth and the skin didn't grow over it) . I haven't got any feeling on the left side of my face so sometimes my husband tells me I need to wipe my nose. Oh Dear! Hope you are doing well Captain.
Great to see you doing well....good on you for contributing to that video, it really helps bring awareness about the potential causes of HN cancers. I only wish more time was given to the topic, was that 7 mins part of a longer doco?
How are you doing now? Hope treatment and "c" is becoming a distant memory. I have a PET and MRI monday which will mark 18 months post treatment. Feeling a little anxious as always before the scans, can't wait to reach the two year mark where reoccurence rates drop dramatically.
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.
HI there Kerrie Jane,
Sorry you and your partner are having to see this nasty side of life. The bright news is that your partner is probably at the peak of his side effects right now. I personally faced the worst days of my life the weekend and week immediately after treatment had ended, I felt I journeyed to the edge of no return. Time is the biggest healer right now, the treatment is over and now it is all about recovery. It is slow, excrutiatingly slow, but each day and each week will be better.....be ready for a slow recovery....but it will happen. With the mucus I know Captain Australi suffered long and hard with the mucus, hopefully he will pop in and give you some of the tips that worked for him. I too suffered with it from about week 4 of radiation up until around a few months after treatment. At its peak I had to sleep in an upright position as it prevented me from breathing if I lay down. So a high pillow of elevated sleepign position helps. Steam really helps loosen it, I used a neubuliser provided by the hospital for the good part of 6 weeks. It really did help me. My last two weeks of rad I would have to use the neubuliser before laying on the rad table to get treatment. I also bought a humidifier for my bedroom, the stream and moist air assisted me a lot in loosening the mucus to get rid of it. Yes, there will be a lot of spitting and gagging for awhile to remove that mucus. I kept a plastic bag beside my bed at night and would awaken repeatedly to spit into it. It will gradually get better...when?....well for memory it was around the two to three month mark out of treatment I noticed a difference. Now (almost 2 years out), I still get a slight build up once or twice a day but it is minimal. So my advice try to source a neubuliser from your treating hospital ..... they should be able to provide you with some liquid saline to put into it.
Hopefully the others will jump back on and give you more info and tips. Keep positive for your partner, it really is a terrible thing to endure physically, mentall and spiritually....absolutely and utterly the pits. He will get better but as I said it is a slow recovery, that was one thing that really frustrated me the small steps to being "normal" again. ANyone that has gone through this horrendous treatment will tell you post treatment you will discover a new normal.
All the best Kerrie.....here's to a good recovery!
Kerrie, the mucositis is hellish. I understand that there's a spectrum to it, and i was on the severe end, but it sounds like your hubby has a pretty bad case too.
- toward the end of treatment and in the first fortnight following treatment : this was the worst time
- the three months following treatment were frustrating, as it I would often wonder "will this EVER improve"
- six months after treatment it was more-or-less "better"
- "better" is a new normal : it means spitting all the time, coughing up phlegm in the morning, unfortunately I'm 2 years out and still experiencing this, it just becomes part of your life
- if he can take food or drink by mouth, hot water with ginger in it, or hot coffee, whatever he can tolerate. There are beverages that help .. "cut" .. the mucus, even if they're not actually doing anything in a clinical sense, it gives the sense that the cloggage in the drain is washing down into the sewer
- drinking as much water as you can throughout the day has a small but tangible impact on making the mucus more tolerable .. it's just clearer and moister and better to manage
- if you take a hot shower and bend over at the waist as though touching your toes, and hold that position with your head downward as long as you can and try and "collect" mucus, then lift your head upright and hawk/cough up phlegm, you should be able to collect a good oyster sized (sorry!) glob of goop in the morning, and once it's gone your airways feel clearer and less irritated
- if he's really in the trenches, google search "magic mouthwash", it's a special recipe you can have a compound chemist put together, it's a bit expensive, but gargling/drinking it can help a little / a lot / not at all .. mileage varies. I cant remember the exact details, but the compound has a quality that allows it to line the airways, minimising sensitivity
- if you're on the borderline between a good old spew and being able to keep it down, don't fight it, spew. I've found its better to get the garbage up and out and move on
- DISTRACTION: find things he loves doing, or even just things that numb him, like zombie-ing out to a bing-session of Netflix dramas or whatever. It's a tough time, and I can't over-state how helpful it is to stay distracted.
- Saliva: it helps, devastated parotid/salivary glands exacerbate the mucus problem, as one of saliva's functions is a kinda gravity drain .. keeping gunk washing down into the septic tank ... so anything he can to do stimulate saliva might be worth trying. Pubmed shows a small but statistically meaningful benefit to acupuncture in restoring saliva loss .. chewing gum is also supposed to help stimulate saliva, look into all that stuff
Can't think of anything else, above is just my two cents, and it may be worth only that - but hopefully it's of value and offers even a small amount of assistance.
Hello April and Captain Aussie,
I cannot thank you both enough for replying to my message and so swiftly too. It’s heartbreaking watching the person you love go through this horrendous journey but I hope you don’t mind me saying it has been an absolute god send stumbling across your blogs and for me to find helpful tips to possibly help my partner Andy.
I thought it would probably help by giving you a little bit more meat on the bones reference Andy’s journey- in July this year at 52 years of age I noticed a lump on his neck and nagged him in seeing a doctor. He was diagnosed with type 1 diabetes, overactive Thyroid and tongue cancer in the space of two weeks. His private consultant said it was best to have a tonsillectomy due to bateria building up at the back of the throat, Andys op went well. Two days later he was unable to swallow even saliva, two to three times that week we were back and forth to A & E with the same outcome- the would hydrate him and pump him full of steroids and send him home - still there was no improvement.
Day 7 after the op I was driving him to the hospital, he coughed and started to haemorrhage in the car - we later discovered he lost 4 pints and needed a transfusion!
I drove like a mad woman to get him to hospital, jumping red lights, beeping the horn and flashing the headlights.
In theatre they eventually managed to stem the bleed and Andy spent 10 days in ITU and the first night was sedated to allow his body to rest.
Throughout this time Andy still couldn’t swallow anything and was spitting out this rancid sputum which smelt like rotting onions!
Andy hadn’t eaten for 10 days and had lost 2 and a half stone in weight and was still very poorly.
They made a decision to put a peg in to assist with feeding so at least he could finally eat but he had to be transferred to the ENT hospital via ambulance 15 miles away - they did a night time run so it was quieter!
Whilst The Anesthetist struggled to insert the tube down Andy’s throat they described a loud pop and discovered a huge abscess behind Andy’s esophagus- they drained 630mls of pus from this and have stated they have never encountered anything like this before, they couldn’t believe that Andy had shown no temperature to alert this!
Andy finally got his peg and could finally eat!!
So he is now just about to start week 9 tomorrow and is totally peg dependant and can take nothing via mouth and everything makes him vomit! The most major issue is the Mucus and he is struggling so much. He has a Nebuliser and has used this once so far, I’m not sure if it helped or not really.
He is absolutely exhausted and mainly on the sofa as can’t lay flat due to coughing and mucus. I just wish I could help him more, it’s devastating to watch him go through all this and not being able to fix him.
bless you both for being there and giving me support- heartfelt thanks Kerrie
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