3rd T1. this time T1 Posterior pharyngeal wall.....

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Good luck and post back when you can. Let us know how you are

Hi Dani

That was what I wanted. 

Thank you.

Simon

Right now I am just juggling appointments.. Cancer has become the top dog, but the rest is till going on. I am collecting professors.

Hi Simon

youve got this let us know when treatment due to start. In meanwhile anything to wsnt ti ask just post one of us will get back to you. 
hazel 

Hi Hazel

They make a mask on Monday, planning CT on Tuesday and then start Radiotherapy on 24th of this month. I think it is IMRT. I only know what I have seen on the internet. I think is is very different than the Radiotherapy I had to my anus.

I am not sure if MIRT is the common treatment now. Anyone?.

Should I be asking for some thing different? 

I will ask on Monday, I will also ask about the photo modulation..

Thank you

Simon

Hi Simon I m r t is what I had it’s cutting edge the tried  and tested radiotherapy for head and neck cancer. There are trial at Christie’s Manchester using proton beam therapy but that’s in its infancy to fir ness and neck. Try to keep off Internet stick to on here and read our blogs minds below eith links to others. 
the mask making is simple, ask for eyes to be cut into the mask makes it a bit easier. Remember h p v tumours respond well to radiotherapy. 
the side effects don’t happen all  at once the first week usually is fine by week 2 things ramp up. 
you’ll get fine.

mare you having  chemo as well ? 

Hazel 

Hi Hazel, Dani, and the rest of the club

I don't have a CNS yet, which is a pain. I will ask about this today. I am still waiting on letters, especially a letter of diagnosis, which I need as it opens some doors in preparation for treatment. 

Teeth are my first concern at  the moment. Mine are in a terrible mess. The oral surgeon is going to take out a tooth at the back but is only interested in the lower back teeth. I have cavities in all teeth, what sort of problems is this going to cause me? Both pre treatment and post treatment.

Transport is going to be a pain with Covid and anything else out there,, being HIV+ radio therapy will take my immune system to new lows. Public transport is probably not a good idea. I talk to my old HIV oncologist on Friday at Chelsea Westminster about prophylactic drugs. It was nice of him to agree to see me. I am hoping that he will get involved as the CNS there is great. Past experience at the Marsden with CNS team has not been good. Dont get me wrong, the docs and profs there are world leaders, but it can be a little factory like.

I am just trying to prep for this now.

Simon

Hi Simon if dentists has looked at teeth they will take out what they deem as a threat. Presume you’ve had x eat that determines your jaw strength. So maybe  get the cavities filled prior to treatment. The actual radiotherapy won’t damage your teeth it’s the lack of saliva afterwards that makes us more vulnerable to tooth decay. You’ll be given special toothpaste which mitigates decay but you need to brush 30 mins after food it becomes routine. As for c n s do you have a Macmillian team in the hospital ? Mine was invaluable. 
Agree public transport might not be the best. Do they offer patient transport? Some do 
Hazel x

Hi Simon. Get your teeth fixed before you start RT. The most vulnerable parts  of your teeth are where they meet the gums. This is where decay can set in if your saliva is compromised. I have a fluoride varnish every three months at the hygienist. High fluoride toothpaste does help too and you’ll get this on prescription. There is also a preparation called GCMI tooth mouse which is used by orthodontists to help recalcify enamel. I’ve got a piece in this in my blog. 
RT won’t do much to your immune status but chemo might. I can’t remember whether you’re having that. 
Xx