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
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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
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I've just been reading through some forum posts, sympathising with people who (like me) are suffering through cancer, it's treatment, or it's side effects. I made a casual remark in one of my replies, "love is the opposite of cancer" I realise afterward that this is actually something that really resonates with me as an absolute truth. Enough that I wanted to articulate it, in the hopes that anyone else suffering through cancer might take it into their heart and carry it with a new strength. Love is the opposite of cancer. If you want to defy cancer, do not allow your life to be defined by how it ends, or by a disease. Be defined by the bonds you forge, by the beauty that you breathe into the world. Don't allow this disease to curdle your humanity and that seed of love you carry inside you. Love. Love without hesitation. Love yourself. Forgive yourself. Be strong. I realise that one of the things that's given me strength throughout my (quite unpleasant and unfinished) battle with cancer is the love I carry for my children, my wife, and my friends. I think as you deal with a potentially terminal illness, there's an impulse to pull into yourself. To grieve, to be afraid, to be alone. I say defy that. Reach out. As Freddy Mercury sang it "find me, somebody to love" Good luck all. Kind Regards Simon
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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.
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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.
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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.
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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.
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Hi There So at age 44, I was diagnosed with a regionally advanced head & neck cancer. It was staged at T4N2BM0 if that makes sense to any of you. It was a cancer starting on the tonsil, and had grown to the point that it was abutting the jaw & soft palate, and the local lymph node had a string of cancer in it, and they thought there was also a microscopic cancer presence in the opposite lymph node. I had 35 radiation treatments over 7 weeks, and 3 doses of chemotherapy (high dose cisplatin) The goal was total curative treatment, although survival rates for my cancer were around 60%, I have some advantages: - cancer was HPV+ (+20%) - I have a nagging wife to look after me (+3%) - I'm young and strong and will endure any treatment without complaint or disruption (+2%) So my numbers are pretty good that the cancer will be eliminated from my body, after which I intend to take a holistic health approach to my life, dealing especially with nutrition and immuno-defense. (I think that's how cancer took hold - we are always fighting of mutation and cancer, but I had 3 young sons born over 5 years and one turned out to be autistic, and I just let my defenses drop as I focussed on them). I tolerated treatment pretty well .. only toward the end did it start to get a bit rough, in the final weeks the side effects crept up on me. I suffered from: - total loss of taste, and - rancid taste dysgeusia (where your saliva and anything else put in your mouth tastes rotten / contaminated) - moderate interior and external burns to neck - increasing mucositis (ropey, thick & foul tasting mucous that I had to cough up constantly) The first week after treatment was the absolute worst in my life. Horrible pain in my mouth, throat and neck (the oncologist says a normal person would be screaming, I was taking aspirin - but they immediately prescribed a morphine based pain remedy). Right now, I'm 5 weeks out of treatment, and I'd say that each week I've gotten about 10% better. My suffering in week one was at it's peak .. let's say 95% .. I can imagine worst suffering but not by much. Constant vomitting, constipation, blood from mouth and bum, really nasty stuff, mucous always being coughed / vomitted up ... yuck. But now, 5 weeks later, I'd say it's sitting at a comfortable 45% .. still suffering, but feeling better and stronger. I can drink a little by mouth now, and I'm starting to experiment with soft foods (been wholly reliant on a PEG tube for the past 3 months). Anyway, that's my story, which leads to my question. If you've been treated for head & neck cancer, can you share your story on the side effects and how long they lasted ? For me, the main ongoing problems are interior throat/neck pain, and thick, ropey mucous. My sense of taste is returning, it's not 100% but it's coming back .. if not for the yucky tasting mucous contaminating everything, I could probably eat totally by mouth now. I saw a patient survey that said the average time for mucositis to heal was 8 weeks. What was your experience ?
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Hey Mel Normally when they say it's incurable (are you sure they didn't say "inoperable"), it's because it's Stage 4 and metastasised to other parts of the body. Bowel cancer is actually pretty treatable these days. One word of advice - never take a defeatist attitude with your cancer NO MATTER what they say. I'd suggest that concurrent to orthodox therapies (surgery, chemo, radiation), look at immuno defense, as the gut & bowel are the starting points of our health. There's a lot of quackery online, but also a lot of sincere testimonials where people with bowel cancer who couldnt afford or had no hope from orthodox therapies tried alternative health approaches (superfoods like pawpaw for example), and the total cleansing and antioxidant diets helped to push their disease into remission. Google search stuff like "super foods versus cancer" and decide for yourself.... But never give up hope.
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Hey there, Ashes
How have 1600+ people looked at this post, but nobody responded. It lends substance to your concern that a lot of people just don't seem to care (or find it too hard).
Having been around the mulberry bush a few times, I do know that people with true heart .. the real stayers, the ones who are there for you thick and thin, are extremely rare.
People pretend it, all the time.
The make the sounds of love & fidelity. But yes, it's no surprise that people can fall by the wayside when you're hit by hard times.
In many cases, it's not even a mean-ness of spirit .. it's more of an awkwardness. (Or at least that's a nicer excuse), "Oh, she's suffering so much, I don't know what to *DO* or to *SAY*"
(When in reality, all that you really need to do is BE there. Being there matters)
Me, I'm lucky, no abandonment - in fact, the opposite .. but I'm the kind of person that doesn't nourish acquaintances, I only put time and energy into full-blown friendships, and I've made good or lucky choices.
What I'd suggest is - you need someone in your life. (Hell, even if it's just a cat, that might help). You sound in dire need of emotional support and nourishment.
You could look at professional help for depression & isolation, but personally what I'd do is choose a place you like and spend a lot of time there (example, local library). Read, if reading gives you pleasure. And if you make eye contact with someone, start to chat .. take it back to the natural basics.
And if a connection forms, let them know about your cancer, your loneliness, but don't be .. well, you know .. overly clingy. A friendship that forms in a dark time is so much better & more inspiring and nourishing than a false friendship that abandons you on a dark day.
Anyway, there are decent and kind people out there, I suggest you find one or two and form a circle of friends. Sure, there are cancer support groups and stuff you could connect with ....
... but .. that doesn't quite sound to me like what you need. You just need a friend.
Anyway, like any success in life, it's trial and error, right ?
Sounds like you have skills and instincts, revive them. When you meet people, just look in the eyes, you'll be able to tell if they're a goodun or not.
If I were sitting on a park bench watching my kids play and a stranger came and sat next to me and said "Hi, I'm sorry to bother you .. I just .. I'm lonely and I really need a friend" .. I like to think that after sizing them up a bit, I'd invite them home to dinner.
There's good people out there. Don't give up, you can make new connections and find the nourishment you need.
Where there's life, there's hope.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.