I am out the other side of my tongue surgeries at the moment Budgie, touch wood, but you just never can tell with ACC. As I have said before with this disease it has a mind of its own and it does not play by the rules of any other known cancers. As far as I can research it has no known causes, unlike some of the more'' common types'', that is to say, better-funded for research where causes have been proven ie smoking or alcohol.  I have no wish to put anyone or their own diagnosis down in any way shape or form as we all have our own peculiarities in our conditions end result. The jury is still out on a few of the rarer types of cancers, but by and large, the results are in it is mainly lifestyle choices for the rest. And I will add this also takes into account environmental factors that you knowingly or unbeknown to you are exposed to in your working life. Craig  ... View more

Katekat thanks  for the heart   Craig ... View more

Craig here, read em when you can, I don't think they matter all that much when I read what you have endured, you are a brave mofo, if you will pardon my french, that's some heavy-duty shit to be missing. I am waiting on results for a drug trial for Larotrectinib a last resort drug as well. Sleep Deep till tomorrow Budgie and regards to your loved ones. ... View more

That's good to hear Budgie. If you don't mind me asking, what type of cancer do you have, mine is saliva gland cancer as are the Mets in my lungs, It will always be saliva gland cancer where ever it may occur in the future. Having said that I am glad to hear that your bone mets seem to have disappeared or are maintaining size. The Status Quo maintained Craig ... View more

Hello Budgie, Thank you for the heart. I am replying to your post from earlier today, how are you traveling?. I myself feel pretty good. I hope you are well. Craig ... View more

The common consensus is that in order to effectively control oral maladies after surgeries is to make an environment that does not foster the overgrowth of certain bacterias. These conditions can be curtailed by the use of medications or home remedies that have been tried and proven over time. The internet and more importantly your oncologist/doctor/nursing staff can give you the information that will help alleviate symptoms of these conditions. I have personally found that a good diet helps, don't give the bacteria a chance to thrive and it can't survive, I'm sorry but sugar is a no-no as it promotes thrush big time and cancer loves it too,[I was told this by an oncologist when I asked about ketosis and ketonic diets shortly after being diagnosed with ACC, PET scans utilize irradiated glucose to spot cancer ]. I know that I will not survive this cancer as it has no known cure and mine has metastasized to my lungs so I WILL NOT POST CRAP just truth if only for me to read, I also will not sugar coat my posts to alleviate as it is cruel to do so. I will always try to be here to help lift us to a level of mutual support and understanding and hope my experiences can help others to get the answers they need to live as complete and compassionate humans, not patients. Craig ... View more

I am going to have my PEG checked in the morning, it's been a long time since I have had to use it as my primary mode of nourishment, I had to maintain it so it could be used in the event of more mouth surgery. My story is nothing special other than that my cancer affected my saliva gland/s on the right side of my mouth, just the major ones; sublingual and submandibular but not the parotid. Not very good if you cook for a living or live to cook. Our taste changes over time as a matter of course, from infancy to our dotage it is just a fact of life. The main concern with treatment for oral cancers is that we lose our sense of taste and no one can suggest how to adequately satisfy our hunger for food that nourishes the body let alone the soul. I'm certain everyone can equate with that. I myself love food, from the prep to the eating, nothing too hard or different when it comes to menu de jour. I have tasted the bowels of gastronomy in the form of a meal replacement in a box with the dubious flavor of natural, to which I was naturally allergic and proceeded to throw back up, then I FOUND CHOCOLATE AND COFFEE AND STRAWBERRY. Sustagen hospital or Sustagen sport is also very good and will help to maintain a reasonable weight nutrition/balance, better than nothing until you can eat solid foods again, and it will happen. Craig ... View more

Hello Wombat, great to hear you have a mantra to follow in your journey. Everyone needs something or someone to get us through. Mine, I think, was my wife's love and determination that I would not die and I thank her every day for that. Having said that I hope they got it all and you don't have any more problems requiring another mini face lift🙂. I had a PET scan to find any other sites and it proved to be clear. So I'll sign off for now .   Craig ... View more

Hello Lorraine   I am glad your feeling well and not tired any more, sorry about the house work, it takes a bit of time to get back on your feet and feed. I enjoyed the natural flavours of food after about a month or so and it was great to do so as I am a chef and my wife doesn't cook. My sense of taste has changed and I don't know if it will ever return to what it used to be but I can still knock out some damn tasty food when needed.   Be sure it was a head cold I had something similar that turned out to be a nasal infection from my immune system being suppressed by the radiation and the area that was irradiated. I will  sign off for now and wish you a speedy recovery  Craig ... View more