January 2018
Hello Shane Well done on getting through treatment , a relief I'm sure. I had a similar cancer and treatment some 11 years and have experienced dry mouth you speak of since treatment. Ive had one silivary glad removed with one remaining. Some time after treatment (with in a year I think) my oncologist gave me a phone number of an acupuncturist saying some patients are experiencing relief. I had acupuncture treatment ( needles in index fingers and in my ears ) over two consecutive day, with good success. Instantly I experience siliva ( I celebrated with a few bits of toast , not possible previously). I return for "top ups " every few years with the same result. The siliva is thin , airy and I still require water to eat most things and carry water with me all the time but definitely better. I reside in Adelaide where I had the original treatment (www.thephysiostudio.com.au )so unable to recommend any practice in Brisbane. I did move interstate for some time and received treatment in Hobart which the physio studio sent through the treatment to an acupuncturist there. Maybe worth a call ? It has been definitely worth my while and will continue with the treatment. Hope this helps and good luck, it does get better Jonas
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December 2017
Hello Paul I too will be at the cricket , bit of a pity series is decided. I think my number has been sent through to you. If you give me a bell at some stage we can organise something the following days. I would appreciate it cheers Jonas
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December 2017
Hello Paul
Ill be in Sydney in the new year , 3rd to the 6 th of Jan if your about . I'm still waiting on a date for the op, I'm thinking late march. Would be good to catch up for a coffee if available .
thanks
Jonas
Edit note from @Katekat: I removed your mobile number for privacy @JonasVarcoe - I will privately message yourself and @PMS
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November 2017
Hello Paul Thanks for the reply , 4 surgeries is definitely bad luck . You have given me a bit of hope re the ride after a week or so and that the loss of the fibula doesn't hinder your activity. I will have an extra helping of pudding this year also, I lost 18kg after the initial treatment which took a few years to get back on especially as you mentioned with restrictive eating. I would like to keep in touch especially closer to the op as I'm sure some concerns will rise. Ive the luxury at the moment to schedule the procedure myself as my jaw is holding up ok albeit under 10mm thick in some places. I'm in Adelaide but ive a sister in Balmain whom Ill visit in the new year hopefully, if it suits a coffee or I might bring the bike take care Jonas
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November 2017
Hello PMS How are you going now re recovery ? I'm about to have the same procedure but with full jaw replacement. They are modelling my jaw at the moment for surgery in the new year. Ive been cancer freee for 11 years but was diagnosed with ORN of their lower jaw 3 years ago. We tried to fend it off with drugs and decompression treatment obviously with out success . I'm a active 45 yo with a great passion for mountain bikes and a 4 yo son to keep up with, I have concerns re the recovery of my legs as they will use both of my fibulas (on top of the procedure its self). Anything you have found helpful may put my mind at rest. cheers Jonas
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March 2017
Hello Captain Sounds Like things are moving on and as we discussed before we had very similar treatment, in my experience the mucous went away but then left a dry mouth. I'm sorry but I didn't document things as you have so the timing evades me some what. I couldn't take anything remotely acidic for a long time (I think at least 12 months). I remember eating a mango ,and looking so forward to at but it burnt my mouth. I lived on weetbix with honey for ages. I was a Asian food lover but chilli was out of the question for years as was a glass of wine. The good news is it did come back I enjoy a good green curry now and a glass of red. It took 8 years ( sorry ) for my tastes to return to pre treatment, and it took some months for me to develope a palate that allowed me to enjoy food again. I had and still do have acupuncture ( I get a top up every two years or so), this was a great success for me after my first try I was able to eat a pice of toast ( small pleasures ). They put needles in my index fingers and my ears over two consecutive days and "spit" came back. It's definitely not pre treatment but much better than it was. I hope this gives some hope , hang in there it got better for me but hard yards for sure over a long time. thanks Jonas
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February 2017
1 Kudo
Sorry I prematurely sent !, My name is Jonas. I totally know what your going through and feel for you . Let me know if you walk to have a yak as I found this helped . Take care and keep head up where possible. It will end and your through the hardest part Jonas
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February 2017
2 Kudos
Hello I had throat cancer some ten years ago at the age of 34. Surgery removed the tumor and an arc of my tongue, lymph nodes, and one silivary gland. 6 weeks of radio and 3 boots of chemo as well . We were/ are in a similar boat. I had the same side effects for around 4 to 6 weeks before it stated to subside, excess mucus residing and "that taste" leaving my mouth. I had a peg to feed which came out 4 weeks after treatment and also my tongue stitched to my cheek. This helped a bit as I didn't need to use my mouth. I dropped 18 kg which took nearly a year to get back. A lot has passed since it all happened for me including side effects from the radio which is happening now (ive a post about that) If a call would help to discuss any thing Im more than happy to do that
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November 2016
Hello friends Ive been diagnosed with Osteoradionecrosis (ORN) caused by the radio theorpy for throat cancer some ten years ago. Im in for my second run of hyperbaric then surgery in the new year removing teeth and part of the jaw at best possibly requiring a bone graft from my leg to rebuild the jaw if it has deteriorated too much ( wont know til they get in there apparently). During my initial treatment I spoke to a few people that had walked a similar path before, giving me a bit of a picture what to expect. Im enquiring if anybody has any advice on what lay ahead .My medical team are helpful but my previous experience found more helpful info from the patients. Im 44 with a young family I know it will be a tough road for all concerned cheers Jonas
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