I was recently diagnosed with a mucosal melanoma in my mouth (11/4/17), saw the specialist on 26/4/17 and I'm now scheduled for Fibula / Jaw Replacement surgery on 24/5/17 – and it all seems to be moving so fast.
The enormity of replacing my lower left jaw with my right Fibula is hitting me and my concerns are about my quality of life post-surgery and not knowing if there are any alternative treatments I should be considering?
I am very active, bushwalking 3 hours on weekends and cycling 200+k’s per week commuting to work and for fun, so I would like to find out how this will be effected without a Fibula in my right leg.
Having a new lower left jaw and then undergoing radiation therapy so close to my brain is also daunting. I have looked online but I can’t find anything recent. I want to understand the impacts and side effects so I can be prepared and to also help my wife and 14 & 12 year olds to be prepared.
If anyone can help me with information of alternative treatments, what to expect or point me in the right direction it would be appreciated.
Now im just waiting In a holding pattern.
Patience and inactivity is not my strong suit, so it's frustrating.
just making sure I remain in peak fitness, eating healthy, detoxing the liver to handle the drugs and enjoying life
An update as at 23/8/17
I underwent the jaw replacement surgery on 26/5/17 which was an 11 hour operation. After a stint in ICU i went to the recovery ward and was just about to start back on food (soup, etc) rather than being feed through the nose and the blood flow to the flap couldn't be detected meaning a possible rejection. Back to surgery for a new skin flap (luckily the bone graft was holding, follwoed by ICU and recovery ward.
Next I had an infection of the flap which meant another operation, another stay in ICU and back to recovery.
This was followed by another operation when the flap began to fail again, plus ICU and Recovery, but this time the flap held.
I was released from hospital 44 days after admittance and 16kg ligther. I entered hospital at 77kg and zero fat, leaving at 61kg and zero fat, muscle, strength and stamina.
After a month of recovery at home plus 1 radiation treatment) I returned to work for 3 half days and im now doing 5 days a week of 6 to 7 hours per day.
Two weeks ago I start riding my bike again and my legs had nothing. My wife even outpaced me on a lap of Narrabeen Lakes. The recovery continues and the weight is going on slowly even though I'm eating 5 times a day,
My spirits are good and I wake each morning - you can't ask for more than that.
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.
The 4 surgeries in 20 days really knocked me around plus being tube feed and relatively immobile for nearly 55 days meant I lost 20% of my body mass when I was already thin. I was unlucky with the 4 surgeries so I wish you better luck and that should also mean your stay in hospital will be less meaning less muscle wastage.
My suggestions are go into hospital with a few extra kg's (so enjoy Christmas). When recovering get up and walk, do some exercises (calf raises, etc) just to keep the muscles operating.
When released I started flat 10k rides with my wife a week after release and now I'm 3 months post-release and I'm commuting 27k to work with 400 metres of climbing each way (last week I commuted 4 days). I'm no way near where I was but I'm getting there. Climbing is the hardest because I lost all my leg muscles.
I don't notice the missing Fibula, I go bush walking, etc without much difficulty. My ankle feels stiffer but that's all. Climbing steps rocks is harder but I think that is more to do with weak thighs than anything else.
i was never a big runner but when I take my son to the park to play soccer running is something I need to practice and kicking the ball. I lack confidence
and ankle strength to kick it so I tie poke it. I need to practice that.
Eating was my biggest challenge with only half a jaw and teeth, I wanted to taste all those things I used to eat like sushi, apple, etc but I need everything in smaller lots and I have to chew more. With a whole jaw replacement, I hope it comes with teeth.
Jonas, happy to provide more info if you like and happy to chat be phone if required.
P.S I'm Sydney Norther Beaches based if that helps.
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
More than happy to keep in touch and to meet up if you are in town for a ride or coffee.
You sound like you have a positive attitude, so keep it up. This is just an inconvenience not the end.
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 .
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