Hi Shane,   I'm sure you will experience a lot of confusion, doubts and uncertainty in this early period. And It would be nice to say the situation is a walk in the park but it isn't and there will be tough times ahead. However, you can be reassured that if your supporting cancer team are anything like those who guided me through then you will feel more confident and resilient that the journey will be tackled with caring and supportive medical staff beside you. Listen to their advice, follow instructions but always ask questions and participate in your own care. There is no embarassment in asking something you might feel ridiculous about but is important personally for you. For example, when I lost my taste around week 4 of my radiotherapy I switched to a sustagen/protein shake type diet after consulting with my dietician. With the GI problems caused by chemo already unsettling my bowels I discovered the protein shakes caused massive constipation issues. So there were a lot of discusssions about poo!! But the answer came in realising the protein drinks contain a large abmount of wey powder and it was this that was causing the problem. The solution was as simple as adding a few scoops of sustagen with fibre to each meal. And there is no advantage whatsoever in being stoic. If things are not going right you must speak up and consult with your medical team - you win no prizes by hiding behind your pride. When the specialist ask how you are doing be honest. If you ares truggling with anything, let them know. There are many ways to manage situations and your cancer team wants your care to be effective and personalised to your needs but they are not mind readers. I'm in recovery period now so free of further treatment but my mouth ulcers haven't healed yet, I have no taste back yet and my whole oral cavity feels and tastes like it was used for as a temprary sewerage treatment plant. But I know it will recover. Patience then. Ask questions, don't be ashamed of admitting your frailties. And best of luck.   Hector ... View more

Hi Captain,   I wasn't intending to be pedantic or getting you riled but not predanticisim. Firstly, its a descritpion of an invasive medical intervention so accuracy matters. Ventilation is not feeding. Secondly after nasal (or endo-tracheal) "intubation" another tube is placed - either, a naso or orgastric tube. The route (nose or mouth) depends on several factors as well as access of the route for the purpose. Hence nasal intubation is not naso-gastric tube placement. I have performed all 4 procedures in the field.    Now I'm all for common sense, logic and patient experience but your comment about the "medical team"  being:: "with only being able to provide evidence-based information that is considered to have been scientifically proven", makes no sense whatsoever. Exactly what other information would suggest best guarantees your cancer outcome if not scientifically validated information and technologies? And who wrote the very papers you are saying you have read on PubMed if not the same medical professionals (and researchers) involved in this area of patient care? As for the array of other information you speak of -  more often than not it steers further and further away from medical reality based on solid science into areas of personal opinion, conjecture, conspiracy theories, psuedo-science, fakery and con artists with magic cures for cancer.   And I can't say I understand what your phrase "data rational" means. Pubmed is but one source of medical literature on the web. There are many medical databases and many published papers, some excellent, some throw-away. Unless you understand oncology and related topics you are ill-advised to start interpreting papers you come across on the web. Unless you precisely waht it is you are looking for you are just as likely to find misleading articles, out of date information of ideas floated in academic circles but yet to be tested and validated with laborartory experimentation and human trials.   The medical professionals involved in our care are trained, educated and experienced. They work in an incredibly complex and demanding area of medical care. How many cancer patients would your own specialist and nurses have treated, spoken to over the years? How many variations on a theme, different responses to treatement, different side effects would they have had to manage so each patient gets individualised treatment that works best for that patient?   I suggested in my previous reply that we should go through our medical professionals when concerned about our care. You can always get another opinion - but not one from the web. That is neither logical nor sensible.  ... View more

Hi all, I appreciate this forum thread is old (February 2017?) but wanted to mention a couple of things in regard to this particular comment by CaptainAustrali. I realise people mean well but we must all be careful about remarks that may be pertinent to your own care but not necessarily to others. And medical accuracy is also important. For example, its not "Nasal Intubation" as CaptainAustralia has stated. This is not the correct term -  "Nasogastric tubes" are simply plastic tubes inserted through the nose down into the stomach. They have a simple port at the mouth end to which you will attach your syringe with liquid nutrients - a little like sustagen mixed with milk and are used when the normal oral feeding pathway is not available or has become problematice - for example due to pain, partial obstruction by a tumor growth etc. "Nasal Intubation" describes insertion of an ET (endotracheal) tube via the nose into the lungs (for ventialtion in the unconscious person only!!!!!!!) when the oral route is unavailable or less desireable. You will never get one for feeding!!!! The other gentle critique if I may is weight management is crucial in HN cancer situations. This must be managed in consultation with your doctors and dietitcian and continues after treatement concludes. Radiotherapy and chemo induce changes to metabolism that perisist after treatment concludes. And so important to be aware - Articles in the medical literature do not define or describe individual treatment or outcomes - they are academic dicussion points highlighting developments and contemporary or past investigations and may ultimately influence treatment pathways but can't be used as a guide. Many articles will point to survivability statistics and the like for example. Read on their own this can be very alarming if you don't know how to interpret the data or conclusions. Your specialists give you the most realistic and reliable indicators and these are the people you should listen too not articles read on PUb MEd, Medline or Google scholar. Beware Dr Google!!! As for pain relief - all medicines come with effects and side effects. Analgesics in particular are by design and definition potent pharmaceuticals - they need to be. Opiates in particular - Codeine, Morphine, Oxycodone, Fentanyl, Hydromorphone etc are very potent and come with many, many side effects including dependency issues and can be abused. Your regime of pain relief can be adjusted at any time - but must always be done so in consult with your specialist who is pervue to your specific medical conditions, your age, general health, co-existing medical problems use of other meds etc. I hope PAtian Autrali is not offended -not intended. I have learned myself along the way that medical literure is a trap - and I have some medical training and was led astray. My doctors and nurses were always happy to broach my medical questions and pleased in manyw ays to discuss the topics in abit more detail. Their advice was thus all the more important to me and differed rather markedly to impressions I got by reading publsihed papers. Good luck to all. ... View more

Hi all,   My first post so wishing all a speedy successful outcome. I have HNSCC left tonsil T2N2B with 7week radiotherapy and 2 chemo sessions. (one cancelled as I was neutropenic that week). I'm approaching week 7 of radiotherapy. Recovery period to follow during which I hope my taste buds recover after disappearing around week 3/4. Taste became of course, that cesspit, cardboard, icky flavour in the mouth we HN CA patients have come to know and love !!!   I am told I am most fortunate as swallowing has not been a major issue and even today I can swallow my liquid diet with relative ease -just finished second large cold coffee drink as we speak. When my taste disappeared I didn't persevere with soft foods but instead switched straight into a Sustagen/Protein shake liquid diet. Its a horrid substitute for real food I can assure you but may well have reduced the level of secondary irritation in my throat/mouth thus extending the period I can swallow with relative ease.   The protein drinks seemed like a good idea but caused major constipation issues (too much weigh powder) especially in conjuction with the GI problems from chemo. So this was substituted for extra Sustagen, custard and cold coffee drinks. In consult with my dietician there is enough protein and calories to keep my weight stable as it has been right through my liquid diet phase. I still drive myself to treatment every day, use just 2 panadol in the AM and an afternoon endone plus one or two an hour or so before bed. I am still sleeping Ok and just go easy during the day so as not to burn off too many calories. Thats it. I am told I have had something of a dream run compared to many who suffer much worse.   But perhaps thats the message I want to convey. Its different for everyone, be a participant in your tretament - it was my idea early on to go straight for a liquid diet. I also managed my own pain relief schedule to suit- much to the chagrin of my specialist who wanted a standard regime attached to meal times, he assumed, reasonably, that swallowing would be the major difficulty for me as it is for many HNSCC patients and a PEG tube or NG was an inevitability not an option. I adjusted things to suit how I felt but still listened to advice of course.   I have also been ruthless with my oral hygiene and find the morning wash with Peter Mac mouthwash cleans out some of that O/night gunk. I lost 5 teeth to reduce my risk of ORN so have to look after what remains. I know will have crinkled old looking skin afterwards on my neck despite Sorbolene but who cares - my days as a  - I can't think of an alternative non-sexist term so forgive me this one - a chick magnet, are long gone. I am just pleased- ecstatic, that modern medical science is giving me a second chance - no offence - you can keep your prayers.   Cancer carers one and all have been models of professionalism and caring. As for cost and efficiency of the whole public/private cancer management - just consider right now there are over 300 million americans who don't like universal health care because it smells of socialism. Are you kidding or what?   Sorry for long post but first -let me off this time. My love and best wishes to all.     ... View more