Hey Hey   My kids are ages 4, 6 & 7.  The six year old is on the autism spectrum, and the 7 year old turns 8 in April.  They're a bucket of fun and a big responsibility, and my end-of-life worry is exclusively focussed around what happens to them.   Post Treatment:  honestly, I kind of had a similar approach .. let's get through the tunnel and then RECOVER .. but it doesn't work that way.  The radiation damages the stem cells of healthy parts of your body alongside the cancer (the mucosa lining the inside of your throat, for example), and it takes longer for that to heal.  In terms of my expectations (based solely on my own experience), I'd be mentally prepared for:   - the first 1-4 weeks after therapy to be worse than therapy itself - you will break through a 'suffering barrier' from which you'll feel OK and better each day - in terms of when pain meds are most required, for ME the need for pain relief was greatest in those first weeks after therapy   Problems during therapy:  although the chemo made me feel a bit gross, for the most part I had no major problems during the therapy period until about week 5.  (A bit of tinnitus and nausea from the chemo, and loss of taste, but really nothing too awful).  At that point, I developed a rancid taste dysgeusia .. where everything in my mouth, including saliva, tasted like it was rotting .. somehow contaminated ... and slowly increasing mucositis (thick, ropey mucous that made me feel like gagging if I would lie down or swallow - needing constantly to spit it up).  Weeks 6-7, I was carrying around one of those hospital vomit bags constantly, filling it with gross spit all day long.  I still have a little bit of that now .. but 6 weeks out of therapy, it's almost entirely gone, and I can sleep through most nights without barely having to spit.   My experience with burns (internal & external):  I didn't really get problems until around weeks 5 & 6, and it was quite minor at first .. just stiffness .. but it quickly escalated (exterior burns I mean).  In week 6 and 7, I needed dressings every day, and intrasite gel applied over the burns .. but it also healed quickly, by 2 weeks out of therapy, skin is as clear as a baby's bottom.  Internal burns are a different story, I was getting sore throat pain from around the week 5 mark through until present day .. but it's mild now .. no pain relief thismorning, no panadol needed .. the worst point was the fortnight directly after therapy.   Other random stuff might be helpful:  now, I can't say for sure if it's peripheral neuropathy or muscle cramps due to mineral deficiency (I suspect the latter), but after my last round of chemo, my legs swole up like an elephant, I was retaining water and looking WEIRD, but it went away after a few days .. however, in the weeks that followed, I would be woken in the middle of the night with ghastly, horrible cramping in one or both of my legs (sort of the back of the lower leg, the calf).  The kind of cramp that I think everyone has had some time or another --- in america they call it a "charley horse" I think .. a really bad acute muscular cramp that eases off after a few seconds but is quite intense.  Anyway, the chemo doctors had warned of a thing called peripheral neuropathy (which I understand relates to reduced circulation in the extremeties and you can also get it from diabetes) .. but I self treated this, because when I had it once or twice in the past it was apparently due to insufficient sodium or zinc in my diet ..so I started taking a multivitamin, zinc tablet and some fish oil and it's gone away (I was waking every night, sometimes more than once a night, with intense pain).  So it might be worth thinking about a multivitamin as a precaution. ... View more

Hey April   My first advice - Doctor Google and fools like me .. we're only good for perspective, take it onboard but don't get upset or anxious by it.   For me, the PEG was invaluable, because the mucositis (thick horrible tasting phlegm) was just awful.  That said, everyone has different mileage - your side effects may ramp up faster but not reach as serious a level as mine.  You could approach it day by day, and if you get to a point where you cant take your nutrition/hydration by mouth, get either a PEG or a nasogastric tube in.   Since treatment is already underway, you might as well wait and see - mine was put in prophylactically (before treatment as a precaution) and I'm grateful they did it, although I was worried at the time.   What you don't want, is to wind up hospitalised with malnutrition and/or dehydration.  Monitor your intake pretty carefully, consult with your dietician, and make sure if things get tough that you escalate for advice.  Intubating via nose is awkward and can make you feel a bit iffy (because everyone can see it unlike a PEG), but they can do that reactively if things get tough, and there's no surgery.  (But I understand it's also a bit more awkward to use than pushing feeds in via a PEG)   Just this past week, I'm able to drink a few litres a day, so the formula I normally push down the PEG, I can take by mouth .. so I'm going to give it another week or two and then get the PEG yanked out .. but I'm so happy I had it.  At the peak, the symptoms were just ... yuck.    On pain and pain management .. I'm pretty stoic, I have a somewhat abnormally high tolerance for pain (according to the doctors) .. but yeah, after all the radiation the throat gets pretty raw and torn up, and it takes several weeks to heal and feel better (for most people).   For most of the time, I took panadol & neurofen, but they did prescribe stronger meds which I used for a few weeks post-treatment (Endone & some morphine based powder, I can check the name if you need)   Suggest just keep eating by mouth as long as you can, and when you start to find it tough, ask for urgent advice from your care team.   Also:  my advice would be different to the dieticians ... they say TWO things that I feel are not scientifically founded and potentially even negligent:   1) FORCE yourself to eat .. mind over matter 2) you MUST maintain weight during treatment   My comment on both:   1) Dont' force yourself to eat, if you stop entirely, YES, you risk losing or undermining your swallow reflex, but there are exercises you can use to maintain it .. and forcing through pain or revolting taste can actually cause more internal harm, distress, vomitting .. and also food aversions if you are gagging stuff down, which are very difficult to cure years down the track.  Don't force yourself, if you struggle to eat by mouth, look at intubation strategies.   2) Must maintain weight:  I'd amend this to "must maintain a healthy weight" .. if youre a bit overweight, there's NOTHING scientific supporting that weight loss during therapy is a problem.  Maintain nutrition and hydration, absolutely .. but don't get stressed out and anxious if you lose a few pounds just because some food nazis are standing over you.  If you're chubby or obese, use those extra calories to buffer you during the difficult time when you struggle to get the full amount of calories.  The priority needs to be:  hydration, protein (for healing), nutrition .. calories is only a priority if you're at an average weight or below. ... View more

Sorry April, one last comment .. on missing chemo.   I think it's important but not the end of the world.  I personally take the numbers as a pretty good guide .. prognostic numbers I mean .. knowing I have an 80%+ chance of disease free survival was encouraging for me ..   (Actually it prompted a bit of "Gallows Humour", I'd be in the cancer clinic, young and strong, and I'd look at 20 or so fellow patients around me and joke in my mind, "Oh .. sir, you're older than God .. sorry, you're OUT, that gives me an extra 4%" .. "Oh mate, is that wound on your leg actually weeping pus right now ?  Sorry you're OUT and I'm up another 4%" "oh maam you look so kind and I feel for you, but you're clearly over 85 ... OUT .. hey that's almost got me to 100%!)   (Cancer is weird)   But yeah, chemotherapy .. when they use it to support radiation, I think it's called induction chemotherapy, and it's designed to help focus the radiation on the mutant cancer cells, and in terms of the ultimate patient outcomes, it's supposed to add approximately 2% to overall survival rates of people in our kind of situations.   So by being unable to tolerate the full course of chemo, your prognosis dips -2%   It's not too bad, as far as numbers games go .. but I'd personally cling to every percent if I could.   THAT SAID .. mate .. the loss of taste and taste distortion, the tinnitus (ear ringing), constipation, leg bloating .. all that friendly crap the chemo has to offer .. well, if you get to avoid that, it might be a worthy tradeoff.   But the doctor is absolutely correct, for our kind of head & neck squamous cell carcinoma, radiation is considered the first and best line of defense (unless it's early enough and clearly marginated enough to have a solid surgical option). ... View more

30 rads .. okay so that's 6 weeks.  I'd predict your current problems will worsen slightly every week, and around week 6 (and the first week after treatment), if you don't have a PEG inserted, you may run into trouble taking nutrition and hydration by mouth.   Best of luck, I really wish you well.  It sucks about the kids, doesnt it ?  All we can do is push that anxiety aside and move forward with as much personal strength as possible.   S ... View more

Hey April   I'm sorry if it's a kick in the guts, but if you're starting to get hit with side effects at week 3 of radiation, I think it's probably going to get much more severe.   I'm assuming you've got a 7 week course of radiation, as I did ?   For me, I had next to no side effects up until about the 5th week, where the damage to my inner mouth & neck started to evidence itself in mucositis.  (Actually, I did lose my sense of taste not long after the first chemo, but that was manageable until the mucositis hit).   From Week 5 onward, it was a gradual escalation, culminating in the worst week of my life in Week 8 (the first week after treatment - actually the first fortnight .. was just awful).   Right now, I'm about 6 weeks after treatment, and the mucositis is starting to go.   Thankfully, for the first night in ages, I had a full nights' sleep last night .. and I didnt have to roll over to spit in a bucket once (whereas a week or so ago, I'd be spitting many many times a night).   Still can't eat by mouth as the mucous slime & taste distortion work together to make it too unpleasant, but I am back to taking hydration almost purely by mouth, the first time I drank a 1 litre bottle of water felt like a real victory.   But yeah, April, based on what you're indicating, if you don't have a PEG in, I'd suggest seriously talking it through with your doctor.  From my reading, virtually ALL head and neck cancer patients suffer mucositis and serious internal damage & pain.  (And external burns in many cases).   If I didn't have my PEG, I would be in a pretty grim place - even with it, I've lost about 15 kilos (but luckily I was quite overweight at the start of therapy).   Incidentally, if you are a bit chubby and the dieticians tell you that you have to maintain weight over therapy, but it hurts or is disgusting to force yourself to eat, tell them to go take a flying leap .. the scientific evidence supports that weight loss during treatment (for the obese/heavy cohort) in no way impacts the patient outcomes that matter.   But yeah, my advice would be to very seriously consider a PEG tube.  Mine was inserted before treatment "Prophylactically", on the basis that I would very likely need it .. I was worried at the time, but in retrospect it was a vitally important decision and I'm very glad they pressed for it.   Also:  I'm in Brisbane, I know this is the NSW forum (sorry cockroaches!) I just stumbled here randomly and you tend to stay where you start 🙂   Kind Regards   Simon ... View more

Hey Melissa   I think you hit the nail on the head, in describing the kind of generalised anxiety that (I assume) everyone who's gone through cancer must suffer.   I myself have just gone through treatment, and I don't know if the treatment's been successful and won't find out until 21 March.   If it wasn't successful, I actually may be running short on options.   If it WAS successful, I still have to approach life with a new type of weather in my barometer, the cloudy old "Cancer recurrence worry"   It is like grief, I think .. especially if you have young children.  I honestly am not distressed so much about end of life myself, but the idea that my three young children (one of whom is autistic and really needs me) would be subjected to the grief of losing their father so young (ages 4-7)   Fingers crossed my cancer is defeated, but you have to approach it as a battle won, not the war, that's my opinion.   I think the only option is to work on your body's immune response, and living a maximally healthy life, and filling it with as much love, joy and happiness for yourself and the people you care about as you possibly can.   How do we defy cancer ?  We love, love is the opposite of cancer. ... View more

Hey, I thought I'd add a supplemental remark, if anybody finds themselves in a similar boat, researching whether or not to get a PEG inserted.   (I've finished my treatment and am now in the side effects phase)   I'd say, confidently, that getting the PEG was the best decision and without it I'd probably be suffering some pretty serious medical problems that could even have disrupted therapy.   I had some minor complications (massive fever spike after surgery, and much later a minor stoma infection treated with topical antibiotics), and even so have absolutely no regret with the decision to get a PEG.   Head & Neck Cancers are among the worst for side effects, and it's indicated that close to 100% will suffer some degree of mucositis, loss of taste, dysgeusia (distortion of taste so stuff tastes like metal, wood chips or poo), pain in the mouth, tongue & throat.   I couldn't eat by mouth for close to 3 months (and counting, I'm only tentatively starting again now).  Without a PEG tube, my overall suffering level would have gone up dramatically.   If you're researching and looking for a testimonial:  I say yes, get the PEG tube in, any risk is offset by what a dramatically important tool it will be in your treatment & recovery. ... View more

Really does sound like we're in a similar boat, mate.   Being so young, and having young children - that's the kick in the guts, isn't it ?   I hope your jaw surgery and replacement goes well & congrats on beating the cancer. ... View more

Hey Jonas   Mate thank you very much for taking the time to reply.   Honestly, just hearing that someone with a very similar experience had the side effects start to fade around 6 weeks following on from treatment is a major encouragement.   I can feel things getting better, so it seems like I can have a degree of confidence that this'll continue.   My hope is the mucos-slime will be a thing of the past sometime in the next few weeks - that would be .. a delight.   My only problem is the shadow of an unknown result looming over me.  I have my supplemental PET Scan scheduled for 21 March, where I really really really hope the doctor will confirm for me "Simon, there's no evidence of disease, looks like we got it"   If they tell me something else, I may just be screwed 😕   For my type of cancer, radiation is the first and best treatment.  Now that it's shrunk substantially, there may be a surgical option, but if the radiation didn't succeed, I understand that my prognosis takes a sharp dive.   Which is heart-breaking, not for the loss of my own life, but for the fact that I have three sons, one of whom is autistic, and needs me there to guide and love them in the years to come.   I can't and won't subject those children to losing a father at ages 4, 6 & 8 !   But it's looming over my head as a big UNKNOWN until 21 March.  But in the meantime, fingers (and eyes, and toes and everything else) are crossed as far as they'll go. ... View more