March 2017
Hullo There OK, so I have completed treatment for cancer of the tonsil, abutting the jaw and soft palate. 35 radiation treatments over 7 weeks, with adjuvant chemotherapy (3x high doses of Cisplatin). Lost my sense of taste early on - in fact, worse, developed dysgeusia (taste distortion) the bad kind where everything in your mouth tastes rancid. I thought I'd describe my side effects and progress now that I'm almost 3 months out of treatment (PET scan is 21 March, fingers crossed). If you've had similar cancer & treatment, I was wondering if you could share your experience ? First Two Weeks After Treatment An utter living hell. Pain daily (and nightly), can't keep food down, even PEG feeds. Vomitting is violent and awful, and often bloody. Swollen legs, tummy cramps, horrible constipation to the point where it feels like you're trying to poo a newborn baby (and when you're done, blood splashes into the toilet - sorry). Horrible mucositis .. so pain within the mouth & throat, and worse, a thick ropey saliva that you have to spit out constantly. External burns to the neck are painful and require dressing with intrasite gel. One month after treatment The constipation, water retention and external burns all clear up in the 3-4 week mark, but the mucositis is still bad. Have to constantly cough up phlegm, and can't eat or drink (because of the foul taste and feeling that the ropey phlegm is accompanying the food down your throat). Still occasional vomitting but not as bad. 2 months out of treatment The mucous starts to back off, but is replaced by dry mouth - waking several times at night with an arid dry mouth. Gross mucous is still there, but it's less intense - so I can get the PEG tube yanked out (because I can now tolerate liquid by mouth, even if I can't eat .. so I start drinking the formula I'd normally push down the PEG). Begin to detect some returning taste, but it's maybe 40% of what it was pre-cancer. Third month of treatment I have to be grateful that everything has gotten progressively better, but I find myself wondering if I'll hit a ceiling. For example, the mucous is much improved, but it's still there, as is the internal pain in the back of the throat, and the occasional coughing up blood. In terms of the severity, I'd say it's about 20% of what it was at it's worst, but the burning question for me is: please tell me this is not as good as it gets - will this mucous problem go away entirely ? The dry mouth is quite bad, but manageable. Trying acupuncture as there are some international studies supporting efficacy with dry mouth. Just need to always carry water around and keep a bottle by the bedside .. the way it interrupts my sleep is demoralising, but I can live with it. My sense of taste has improved a bit - it's maybe 50% of my pre-cancer levels .. basically I can taste a shadow of what food was pre-cancer, and the same question that applies to mucous also applies to taste: will it recover completely ? When I try to eat now, I can swallow solid food, but I can't eat for pleasure, because, although I can kinda taste the food a bit, as I chew it (necessarily mixing in water so I can swallow) it feels like its being tainted by the mucous, making swallowing the food a bit .. gaggy. With willpower, I've eaten chicken wings, some apple, yoghurt .. but it's unpleasant at this stage. Also, weirdly, I seem to have lost my ability to vomit. I'd never have thought that was a bad thing .. but I kind of miss it when I'm gagging and coughing, and something starts to come up .. but I can't get it all the way up (perhaps due to no lubrication), it just kind of lodges in the throat and I have to swallow it back down. Have you experienced this ? Just curious to hear the experiences of someone in a similar boat .... thank you.
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February 2017
G'day Jane Although there's some good info tucked away in the forums here, I can't say there's much of a community that I've noticed. It looks like a great many posts (some heart wrenching) go unremarked, and for the most part the pattern appears to be that a new person arrives, puts their story out there, maybe gets a comment, maybe not .. but doesn't come back. Personally, I reckon it's because the site doesn't allow you to follow threads, or email you when a thread your following has been commented on .. or even provide a clear central way to see if your posts have been commented on - without checking them manually. If you're interested in joining an online community, I'd look overseas .. there's a mega-community out of the US, all cancer sufferers and survivors, and they seem very collegial and helpful. I've only used it in a "research if other people share my side effects" capacity, reading but not posting .. but if you wanted to join an active community, I'd look there. Suggest google "CSN cancer . org" - CSN = cancer survivors network. Forums seem hugely active compared to we aussies. Best of luck, sorry about your diagnosis, keep your chin up !
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February 2017
1 Kudo
Not too worried about the financial side - I think it's like $27 for a container, and a container lasts about 4 days .. and the whey protein powder is even cheaper and lasts longer. On that basis, I'm spending something like $50 on food for a week .. which, really .. pre-cancer I could spend that in a day. So no worries about defraying costs. Found fortisip to be a bit gross, think it was vanilla, can't remember - didnt try different flavours, just jumped over to sustagen.
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February 2017
I think if your mucositis is gone 8 weeks after treatment, you're lucky. (I read a patient study where something like 45% reported it was gone by the 8th week, but for many it went on months longer) I'm about 9 weeks out now, and the mucositis is backing off .. but it's still unpleasant enough to stop me from eating solid food by mouth. I'd say it's down to about 30% severity of where it was the day I finished treatment. As the mucositis backs off, you start to notice the dry mouth more .. dry mouth is severe to the point where I can no longer vomit .. just now I was gagging and trying to vomit from a fleck of something in my throat .. but can never get the vomitus up all the way, it kinda lodges in my throat and goes back down (I'm guessing because of the lack of lubrication, dunno) Trying acupuncture for the dry mouth, some studies have indicated it's been helpful.
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February 2017
I actually co-own a travel insurance company (and am currently dealing with tonsil cancer). www.simplytravelinsurance.com.au You'll find with most travel insurances, the approach is straight forward. Do you have a pre-existing medical condition ? OK, you can take a policy, but claims relating to it are excluded. So unless you have a terminal prognosis with limited life expectancy, you can just jump online and buy a normal policy, but you have to be aware that claims arising from your past medical history are out. (But anyone can slip and fall on cruise-ship stairs, anyone can get food poisoning and need a helicopter to medivac them to the nearest land-based hospital - and flights home from there - all that is normal for travel insurance). There are providers out there that say they "specialise" in past medical problems .. you can send in a form (co-completed by your doctor) and seek ad-hoc approval for your medical history, and if granted you pay more .. but claims arising from it are covered. But I can confidently say that these days, none will cover cancer. (Sorry to be so straight about it .. that comes from more than a decade in the industry) Example of claims excluded v claims covered: - taxi crashes into a tree on the way to board the ship and you miss the boat: covered for a 'cancellation claim' (where you get compensated for all pre-paid stuff) - the week before the cruise you get tummy cramps, and it's discovered that the cancer has grown and the doctor recommends more chemo: clearly excluded - while away you get tummy cramps: provisionally covered, the insurer starts paying for choppers, hospital stay, etc, pending diagnosis; and: a) they find out it's food poisoning: no worries, entire claim covered, medical transport home, all that b) they find out the cancer has grown and is causing the pain: the insurer will help get you home as cheaply as possible, but at that point they'll declare they are not liable for ongoing costs (and may or may not try and recover money they already shelled out .. normal ones won't, they absorb it, but you never can tell) The above is just anecdotal viewpoint of me - not representing the company or anything - just giving a broad consumer's overview of how this stuff works. If you look seriously at any product, you need to read the PDS (a document called the "Product Disclosure Statement" which outlines all the terms & conditions etc etc)
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February 2017
Hey Nikki There's power in you. There's fire. We all have it to different degrees, but we don't all have the ability to find it and use it. We're all capable of sudden and dramatic changes in direction. Only you can find your inner strength .. the kids are probably a double edged sword .. on the one hand they're your reason .. and on the other hand the idea of passing away and them being stuck alone with the grief is overwhelming. (I'm in the same boat). You have to fight. My father in law has a similar cancer, in his lungs, colon, pancreas too I think .. really advanced .. stage 4 .. they gave him weeks, maybe 2 months to live (this was like 9 months ago now). He got on a clinical trial which uses targetted immunology to supercharge his body's immuno defences to engage the cancer. The theory is good - we are, all the time, fighting cancer and other toxins .. a healthy immune system does a better job at preventing the disease. A *super* immune system .. well, who knows ? Anyway, just a couple of weeks ago, they declared that the cancer in his body had shrunk about 80% and was in remission. So from weeks to live .. to ... an open question. The longer you can survive, the better medical science will get .. but make sure you challenge the clinicians. If your primary doctor is a radiation oncologist, ask for advice or referrals on immunology, ask about clinical trials, push, beg, plead, cajole. You're just a patient to them, really, one in thousands. They have to remain clinically detached - so there might be crucial little pieces of advice that you don't get, unless you push. Worth thinking about ?
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February 2017
I can't speak for breast cancer, my experience is a different one. But I can say with confidence: your husband is a pratt. As a cancer sufferer, we deserve (and need) the support of our loved ones, and sure, he may be stressed and afraid and forced to confront the idea of losing you .. so it might be genuine sweetness underneath the bad behaviour .. but snapping at someone with cancer in a kind of "snap out of it, I'm sick of this" way ... that's just beyond **bleep**, it's pretty appalling. I'd take a breath, face it each day at a time, and ask for the help and support that you need.
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February 2017
Hullo April. Sorry to hear it's such a **bleep**-show. But nobody tells us cancer will be fun 😕 Yeah, the mucositis is .. yuck. And it takes a while to go away .. I read a patient study where the aggregate was about 8 weeks. I'm 2 months out of therapy, and it's gone down a lot, but I still have it. Nasal intubation: this is generally meant to be temporary, and they say it's demoralising to have a big publicly visible tube running out of your nose, and all those well-meant sympathetic looks or awkward eyes averted .... (that wouldnt bother me, but I'm weird). Personally, as soon as you struggle to take nourishment by mouth, I'd consider it .. but also ask if a PEG is viable. If you assume you're going to have at least 9 weeks of mucositis, then maybe that length of time (or longer) would justify the minor surgical procedure. How much nutrition do you need: this is an important question. I started my treatment obese, and the dieticians were real nazis insisting "YOU MUST NOT LOSE WEIGHT DURING THERAPY", but if you look at pubmed and other scholarly and respected sources of information, if you're already obese (or heavy), it's OK to lose weight over therapy, it doesnt undermine the clinical outcomes. So if they've said take 4 litres of formula a day, that might be based on getting 120g of protein and 1600 calories or something ... whereas with other strategies you might be able to reduce the (traumatic) intake. If you're not heavy, well you do need to try and maintain weight as best you can, but if you are, the priorities should be (in this order & in my opinion): hydration, protein, nutrition, calories - high protein whey shake .. with two small shakes you can get 70g protein per day (.5 litre ish) - hydration: no way around it, you need to chug a couple of litres of water per day - nutrition: a few sustagen shakes per day (250ml ish) should sort you out - calories: make your shakes with milk, not water ... and also, if you get a blender, think about popping down to Woolies and buying one of those premium yoghurts .. 600g thick yoghurt mixed with mango or whatnot .. I cant remember the name, but 1 tub is 1000 calories .. if you mix that into a blender either alone or with your formula, it liquifies quite well and you can drink it down for more calories per effort If I were you, I'd have a careful talk with your dietician(s) and work out the best bang for your buck approach to consumption, and make sure they aren't giving you skewed advice. My experience with pain: now, 2 months out, I'm not even taking panadol any more - but I think pain management started about week 6 or 7 (at first just panadol, but ramped up to the endone and morphine powder in week 7). In my experience, the pain was at its worst in the first couple of weeks after therapy. I still have pain now, but it's like a kind of perpetual sore throat, nothing I can't live with. The thing about the pain is ... know that it's temporary. It may be bad today, it may be bad tomorrow, but in 2 months you will have forgotten it (it's a little like having a baby, we tend to forget the immense pain once it's gone, which psychologically allows us to then go and have more babies). Other comment on pain: ramp it up. If you're experiencing pain without relief, just ramp it up. The pain relief is there for a reason, don't suffer through it. Although morphine is addictive, if you're using it to treat genuine pain, you're fine. My quack urged me to ramp up the pain management, and I did so reluctantly (because my mother is a heroin addict, so I had some genetic familial concerns), but he urged me to use it, it's what it's there for.
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February 2017
There's a reason that the medico profession calls chemo and radiation the "standard of care", it's because it's evidence based. I believe strongly that the human immune system is the trick to ultimately curing cancer, and I wish you very well indeed - but if your disease has progressed, or even just not decreased, I'd urge you to think about the orthodox therapies. The natural therapy spin is to sell these miracle cures, and get you to buy these expensive supplements, but there's no science to support them. For every anecdotal story about a cure, there are probably dozens of people who declined treatment and died. I think you could, for example, go on the paw-paw & cruciferous vegetables diet and I believe it's possible that you could overcome the cancer in your body .. but the math is simple .. survival rate with orthodox therapies is X% .. with alternative medicine those figures can't be quoted. Because there are no studies, and likely for every survivor, a group of others dies. Wildly curious how you've gone, will be watching for an update!
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February 2017
1 Kudo
The hospital dieticians suggested a drink called "fortisip" .. I don't know about any special PEG packs. The fortisip did taste a bit rich and unpleasant to me, so instead I went to Chemist Warehouse and bought "Sustagen Hospital Strength with Fibre", it comes in a container just like baby formula .. you basically mix 3 scoops of powder with milk and make a milkshake which has protein and nutrition. Because you need extra protein when the body is healing or under duress (they say 2 grams for every kilo of bodyweight is ideal), I also got one of those max protein powders that bodybuilders use - two shakes of that stuff per day was good for 70g of protein in itself. The sustagen tastes pretty good, but now that I'm drinking, I'm mixing in fruit, yoghurt, custard, other stuff to make up calories and protein.
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