Hi RCD,   [We have seen mention of mouth rinses/gels that seem to be available in the US and UK specifically for the treatment of radiation induced mucositis and wondering if anyone has found similar in Australia?]   If you can, go back or get an appointment with your treating oncologist. HE/She will be able to write you a script for Mucosoothe gel. it contains Lidocaine a numbing agent. if you cannot see your oncologist straight away then when you phone just ask the receptionist to have the Dr. write script and go in and pick it up and take to the hospital Pharmacy.   You swish this around in your mouth for a few minutes and then swallow. it will numb the mouth and throat so you can eat more comfortably. It will be far cheaper to get it with a script from your oncologist through the Hospital pharmacy as opposed to getting it yourself over the counter at Chemists.   it's great stuff too, even numbs the most agonizing toothache lol.   good luck.   Cheers Maurie ... View more

[Feeling:  Week 3 was a none Chemo week so I felt good. I’ve started to get small ulcers in my mouth cavity. Taking soluble Panadol every 6 hours.]   Hi Andz, You seem to be in good spirits and that's a good thing. I don't think Panadol will cut it for much longer. You may need Fentanyl patches and Endone tablets for the pain.   [Eating:  Trying to eat normal and convince my taste buds its delicious.  Spicy rice dishes, strawberry jam on toast,  yoghurt, custard and rice pudding.]   Good to see you still eat. That may well change as the Mucositis gets worse. You might need a Naso gastric tube and have to inject protien drinks down the tube as eating will probably become to painful.   [Mouth Rinse: Salt water, Oral 7 and 3-4 litres a day water.]   Oncology department should give you bottle of mouth wash as well as Mucosoothe mouth wash to numb the pain. it's kind of like Magic Mouthwash, a thick pink gel.   Wishing you all the best.   Maurie ... View more

Bill Writes @[problem i have now is anemia...my cancer doctors think nothing of it but my gp is not feel that way...he has been testing blood and due back again in a couple weeks....do you know if anemia is common with throat cancer treatment and the gp is missing something....how are your blood tests...are you back to where you used to be prior to treatment ?]   Hi Bill, My blood is okay at present, Triglycerides are a little high. I had thyroid checked and my immune system which apparently Chemo affects. my immune system seems to have bounced back. My treatment ended on 13 March 2019.   Here is a link I found linking Anemia to cancer:   https://www.healthline.com/health/cancer/anemia-cancer#treatment   I presume your iron levels would be checked with your blood tests? Could be since our diets aren't what they used to be and taking a long time to get back to normal eating habits if we ever do, you may be experiencing low iron levels? Something to bring up with your GP.   Bill writes@ [i had a PET 3 mo out of treatment and it was clear....and all doctors say unless something pops up they will not do another pet again and just do chest xray once a year ? how many PET's have you had since treatment....they also told me i can have one anytime if I REQUEST IT but they never do another one unless symptoms pop up]   I had two pet scans three months apart post treatment. Which would have been in June 2019 and then again September 2019. In December 2019 they just prodded the lymph nodes in my neck and camera down throat. I next had a pet scan in March 2020 and then in june 2020. Last appointment was a week back where they again just prodded my neck and camera down throat. Next appointment is in January 2021 for another pet scan. They told me after that it would be yearly pet scan from here on out until the 5 year mark.   I did not have the Peg tube like you or Capt Australi. I continued to eat until mid way through the 5fth week and at that point due to mucositis I could no longer eat and had a naso gastric tube fitted and injected protein drinks into that as well as water and crushed up all meds and injected them into tube as well.   When they removed the tube, I could only drink protein drinks, no solids. Food and beverages tasted crap, still do lol. and I could barely swallow anything. I am back to eating solid foods now but they have to be mushy or mixed with a lot of gravy because of no saliva I just cannot swallow anything. I still use the protein drinks now and then instead having a meal because it's just easier to swallow.   Yep, a Peg or naso gastric tube is a life saver would agree with you there. I don't think having Protein drinks now and then would be much of a problem. I still do as I mentioned.   Wishing you a continued recovery Bill and yes the new you/us and all who have gone through this well.....it's not like life prior. No argument there.   Stay safe in these crazy times mate.   Regards Maurie ... View more

G'day Bill,   Thanks for the heads up with this link. I'm on warfarin for Afib so unfortunately I cannot take any of those meds. Might helpful to others though, hope it is.   Hope you are doing much better with the side affects.  🙂   I had a pet scan some three months back and got the all clear, also seen the Oncologist last week where he prodded my neck and stuck the Camera up nose and down throat. Told me it  was looking good however I had a lot of scar tissue due to the radiation.   Mouth still dry no saliva and not much taste. I do not believe that will change and this is as good as it gets.   Hope this see's you well Mate. ... View more

Hi Bill,   RE: Pet scans. We have universal health care in Australia under Medicare so most scans and pathology are covered by the Government. Hospital admissions, surgery etc bar dental are all covered by Medicare.   You pay a Medicare levy of 2% of your wage which goes to covering Medicare. It depends on your earnings so you might pay higher percentage of your wage on Medicare levy if you earn more.   That said, I had my first pet scan halfway through treatment to see how I was responding. I then had another pet scan 3 months after my treatment ended and then again 3 months after that.   Last time I saw oncologist they just stuck a camera up my nose and down back of throat and prodded all the nodes in my neck.   They have since arranged this coming pet scan at 1 year out to see if I have had a recurrence. I have been told after this one if I get the all clear that will do pet scans at 6 month intervals for 2020.   From 2021 if I'm still here lol they will only do one pet scan per year for the next 3 years. After that they tend to lose interest  and you have just a quick check via a camera up the nose and down throat yearly.   cheers Maurie     ... View more

Joe@ [ I also use a tincture called Red Root which does seem to help unclog some of the lymph backup (every other week for 3 days, max 20 drops a day for me]   Hi joe,   Thanks for that info, i'll have to give it a go and see how it goes. I mainly just rub the palms of my hands down my neck to force the fluid down into Heart area where it can hopefully be pumped out.   Hope you are doing well. all the best to you.   Cheers Maurie   CathV@ [I've had several bad nosebleeds due to the friable state of my blood vessels. Last week I had to go to ER because I had a bad one. Just discharged from hospital last Monday]   Hi CathV,   Sorry to hear, Hope you are doing better now.  🙂 wishing you all the best. One day at a time.   Cheers Maurie   Mahootna@ [I am six years post treatment so have a pretty good handle on what life will be like for you from now on. The saliva function never fully returns as the radiotherapy treatment kills some of the glands and they never repair]   Hi Mahootna,   I unfortunately  know what you mean. It sure is a pain when eating out like you mention. I too rely on soups and a lot of gravy on meals. I can eat some meats if i cut it up fine and smother it in gravy, Fish is easy to eat for me it just kind of melts in your mouth. I'm still taking the protein drinks for breakfast though as I find it easier to just shake the bottle and swallow lol.   My taste still hasn't fully returned and I'm not expecting it to. Chocolate now tastes absolutely disgusting to me. I guess this is the new Me and will have to live with it.   Hope this see's you well.   cheers Maurie.   Bill@ [my mouth continues to go from dry as the desert to foamy like a rabid dog to sticky and disgusting and a few others....at night i have trouble sleeping since my mouth and throat are so dry my tongue sticks to the roof of my mouth and i need to take a swig of water but my mouth feels numbs afterwards...the doctor has never heard of]   Hi Bill, I chew sugar free gum to help with saliva stimulation and also suck on Sugar free sweets. Probably not the healthiest options but they help a lot. if you are still finding foods hard to eat and taste terrible try the Ensure protein drinks. They will at least keep your weight up until you get some of your taste back. "You probably already are on them drinks"   Keep trying though with soups, runny pasta and sauce, scrambled eggs even though I know it tastes like roadkill. Fish too melts in the mouth if you cope with that.   With recurring thrush, Dr.s tend not to like keep prescribing Fluconazole as it can damage the liver. If you can find kefir in the supermarket or a health food shop and if it's the genuine product, drinking it will help kill off your Thrush. I used it with the EX when I lived in Latvia for awhile. It was actually prescribed to me by a Russian Dr. Tastes utterly crap but now days with little taste I reckon I could drink a whole bottle and not gag lol   You can also get creams from pharmacists to spread over your tongue and inside your cheeks as well, If all else fails then by all means see your doc for Fluconazole.   In regards to the Mucositis, I used to get a product called Mucosoothe from the Oncolgy dept at the hospital. it was a thick pink gel with Lidocaine in it and it worked a treat. You would swish it around in mouth and back of throat then swallow it. It would numb your mouth quickly and only cost $5 a bottle but that was with a prescription, without a prescription the pharmacy would charge $89 a bottle.   Unfortunately I cannot get it and send it to you as Customs here will confiscate it and even if it did clear customs here I believe Customs at your end would also confiscate it as well.   Your best bet is go back to your Doctor and get a prescription for Dukes or Mary's mouthwash and the pharmacist will make it up for you. I think though it may cost a bit.   There is also a mouthwash in the US called Caphosol (Available on script) which may help alleviate the Mucositis. Magic Mouthwash though is much much better.   Wishing you all the best Bill and to all the members of this Forum. I go for my one year post treatment PetScan on the 24th of March and see Oncologist on the 31st. I'm remembering the late Michael Becker as this scan approaches.   Cheers Maurie     ... View more

{as for you doctors not telling about all of this ? my dr's never told me ONE THING and they lied...and still continue to lie...they told me never get a PEG, and gee what do you mean thick mucous, and thrush? thats very unusual..,etc etc etc...now they tell me just hang in there and you will be 100%....yeah right....they know nothing or they wont tell us what to expect or how to cope...they hide}   How are you going now Bill? I lol'd at your above comments. Sorry! But yeah, I know the feeling, they don't tell you what to expect in the side effects department. I think they know that if they did you would run screaming out of the consult room and never return lol.   My Dr's did say a Peg wasn't needed however you may need a Nasogastric tube  (i did) at some stage and that it will be Hell once the side effects kick in. That's about all they told me.   I'm almost 1 yr out of treatment and my Saliva function has not returned. I still find it difficult to eat many foods and they have to be sloppy and covered in Gravy and sauces etc otherwise I could never swallow.   Pills do get stuck in the back of my throat so I need to be mindful of that. I also have lymphedema in the middle of my neck. I do exercises to reduce the swelling but I don't think I will ever get rid of it. ... View more

G'Day Shane,   Good to hear your treatment this time around is going well. Hope you nail the sucker! My last pet scan showed up a red spot in the A2 region on right side of neck. Oncologist wasn't sure if it was inflammation from radiation treatment or residual Cancer.   They did a Biopsy of that node and this time they didn't numb it before biopsy...Jesus christ it hurt! lol   Saw the oncologist last week and got the all clear, no Cancer. Turns out it was inflammation.   Wishing you all the best Mate,   Maurie   G'day Bill,   Yes all meds have side effects. Like you, I too tend to look up side effects of meds before taking them. It doesn't mean you will have any of those side effects, most people do not have any side effects.   I understand your hesitancy to take the Fluconazole, sure you can keep an eye out for side effects but I think you will find you will be okay.   Trust me, they work really well and you will be glad for the relief they bring and will clear it up in days.   Long term they do not like to prescribe Fluconazole as it can cause liver damage. For recurrent oral thrush they will recommend  Nilstat or  Nystatin. Amphotercin B  fungul lozenges also work, you suck on them and they dissolve in your mouth. Again you need a script from doctor for them.   There is a one off treatment called dizole  150mg. You take this one capsule and it too will kill your Thrush again on script only. Iv'e had them all and Dizole and Fluconazole seem to work best.   Good luck Mate.   G'day Joe,   I can't really recommend  treatment for your Throat/Mouth Ulcer. I haven't them since  radiation treatment. In my opinion I think you might be best to get an appointment with your Doctor/Oncologist and let them take a look at it maybe do a biopsy on it.   I think it's probably better to play is safe and have it looked at. Wishing you all the best.   Maurie   Now if only Oncologists could come up with a cure to stop your Significant other from leaving you because you got cancer... Ah well, i'm learning to cope with that.   Wishing everyone all the best. ... View more

G'day again Bill,   Radiation Therapy and Chemo will weaken your immune system allowing Thrush to grow. The other thing that doesn't help is the Radiation shrinks the Saliva Glands causing dry Mouth.   Weakened immune system and dry Mouth create the perfect environment for thrush to grow.   I still have issues with Thrush returning now and then and my Treatment ended back in March. Afraid it may be an ongoing problem for some time to come.   If you are taking Antibiotics they too can cause Thrush. Do scrape your Tongue daily as well as brushing Teeth.   I would still see your Physician to confirm it is indeed Thrush but in the meantime until you can see Him/Her call into your Pharmacy and ask for Oral drops...Nystatin etc.   Maurie. ... View more

G'day Bill,   You might want to have your local Family Doctor have a look inside your mouth. The white coating sounds like Oral Thrush.   If it's very painful, burning and stinging it may well be Thrush. It will also hurt like hell if you put anything in your mouth. Until you see your Doctor you should be able to get Oral Thrush medication over the Counter at your local pharmacy i.e Nystatin, Nilstat etc.   Your doctor may prescribe Fluconazole oral tablets if it's really nasty. the tablets take a couple days to start working but will bring great relief.   Hope this helps.   Maurie ... View more