Hello. SCC right mandible removed and reconstructed from fibula. Awaiting radio/chemo.

Hi Geezer63

Welcome to the forum but sorry that your circumstances have brought you here. You have just had a really big op and it does take a while to adjust to the changes in your life. Sorry that it was not picked up sooner. It sounds as though your team have done a great job.

I also had an ulcer on my right lower jaw that was squameous cell cancer and resulted in a partial mandibulectomy and right neck dissection in 2013. Fortunately I did not need reconstruction  although all my teeth and gum and some bone was removed. About 6 weeks after the op I had 6 weeks of radiotherapy 5 days a week but no chemo. The radiotherapy is not an easy ride but if you take it one day at a time you will get there. They make a mask that fits tightly over your face and is clipped into place on the table that you lie on so you are unable to move so they can target accurately the area they want to focus on. This is fine as long as you don’t have claustrophobia. Some people on the forum said that they had eye holes cut in their mask and this helped them with this issue.

The first 3 weeks of radiotherapy are O.K. but after that expect some alteration to your taste. With me everything tasted like cardboard (not that I have ever eaten cardboard .) Your taste does improve after you have finished radiotherapy but it can take a while. Dry mouth is also an issue but also does improve over time.

You will need to take pain relief as directed by your radiotherapy doctor. Eating can become painful and if you still have your RIG in make sure you use it. You can also take your medication this way. I did not have one but was prescribed a mouth deadening medicine that I swished around my mouth just before I ate which helped.

Radiotherapy fatigue is common and I suffered from this. You do eventually get your energy back but you can’t rush it.

I was able to return to work eventually and get back to a fairly normal life but it did take a few months to get to that point. You just have to be patient.

As far as what you can do now, try and get some exercise and get as fit as you are able under the circumstances as this does help. Try and put on a few extra kilos as weight loss can be an issue.

Stay positive as this is a difficult time but there is definitely light at the end of the tunnel.

Best wishes

Lyn

Hi Geezer and welcome. 

I didn't have any surgery but I did have six weeks of radiotherapy. All our journeys are different and some people get through with few side effects. As Lyn has said you'll likely suffer burns in your mouth and on your skin and it might become difficult to swallow. You're fitted with a feeding tube already which is a great advantage. I didn't get much to complain about till the end of the second week when I got a bit sore but by the end of week three I couldn't swallow at all so was fitted with an NG tube in weeks four. I can say honestly that when my analgesia was sorted properly I was comfortable. You get through by taking it a day at a time and by taking your pain killers by the clock.

Have you had a radiotherapy mask fitted and planning  scans taken yet?

The usual Chemotherapy is Cisplatin. This might be changed to Carboplatin if you have existing hearing problems.

Stay with us. There are plenty of people here to give advice and to listen to you. You've done a huge chunk of this already.

Ah, many thanks Lyn.  A few years ago I was 117kg 182cm.  I lost weight gradually naturally to 107kg in July 2022.

Currently 95kg as my "keep this weight" target.

I saw the video on here of the fellow getting his mask fitted.  I'm sure that will be ok for me. I'm pretty good at getting myself in a trance like state for the various scans and procedures I've already had.

I am happy with my RIG.  Been using it for about a month now, although now I can drink the Ensure liquid directly.  I have about 200 bottles of the stuff!

With my fibula removal, I was up on operation day + 2 with a zimmer frame.  Op day plus 4 i was walking on my own in the ward, although trailing 4 drains, 3 drips and a doppler sensor!  Op day plus 17 I walked one and a half miles.  It really is remarkable that you can walk without a fibula.  Who'dathunkit?

Thank you x

Hi Dani,  thanks for replying.

Waiting for appointment at Mount Vernon for in next few weeks.  I have been told by a nurse that I will probably have a chemo session, then 6 weeks of radio then another chemo.  Of course I don't know for sure yet, it might be completely different.

With chemo, are there any tips or tricks to avoid feeling crap, or is there nothing that can be done?

Cheers!

Geezer63rd said:

With chemo, are there any tips or tricks to avoid feeling crap, or is there nothing that can be done?

Take the drugs they give you. The nausea doesn’t last long and can be controlled. You’ll get steroids too so they might keep you awake for a day or two. If you get any tinnitus let them know. Keep your hands and feet warm. Two doses of cisplatin are not that likely to give you peripheral neuropathy but it’s better to be careful. You can buy chemo socks  and gloves to wear in treatment days. Keep hydrated you’ll get through 

Hi Geezer63 -- Had my left mandibulectomy end of September last year, with fibula flap reconstruction.6 weeks.Radiotherapy started early December, and finished on 12 January 23. Am still recovering! Radiotherapy was fairly tough going, as also were the side effects, which I would be happy to discuss with you if you would like as you go through it. Happy to be there for support, as will many others in this group. Basically, I survived, but it has been, and still is, a very long, hard haul. All the best - Sheilagh/Bodhiprem.

Hi Sheilagh

Good news that you’re through. It’s not an easy ride, you’re right. Early days for you for sure. 
12 weeks for me till I turned a corner and felt more like my old self. Hugs. 

Hi Chemo fir head and neck cancers is usually cisplatin I had 2 of s planned 3 sessions. Best advice take the medication. As gif mask I found it ok it was there to do a specific job. I brought her home yes I gave her a name she hangs in the garage nos. 
Any questions just ask one of us, will I will get back to you nothing still sell it to ask
Hazel xx

Hi Sheilagh,  thanks for the reply. 

I'm getting used to the idea that this a marathon, not a sprint.
I'm home but have a deliberately open wound in my neck where it is still draining fluid. I think it is saliva that is the wrong side of the stitches.  Seeing consultant in two days.  I think he may botox the saliva gland.

Are you walking ok?  I'm completely amazed that my fibula-less leg is almost at full strength.  i actually drove my wife's car today. Clutch leg was fine.

Thanks for the support.  I will post on here my progress, assuming I'm able to and not knocked for six.
Did you have any chemo?

I hope you start to feel better soon!

Cheers

Hi Hazel and thanks for the reply.

I will take all meds I'm given!