squamous carcinoma in the mouth

[len1969]

morning all,

I am in Bunbury Western Australia and I have recently been diagnosed with a recurrence of a squamous cell carcinoma of the mouth.

In 2005 I had part of my tongue removed and a neck disection. 12 years later and here I am again.

I have refused the surgery offered to me (this included partial removal of the jaw bone and severing of my lingual nerve) as I beleive my quality of life would be gone. Don't get me wrong, i certainly don't want to die, but I do want to live on my terms. Now I've heard it all "no life also equals no quality of life yada, yada, yada"so can we not go there please. 

A good friend of mine, Mal, had very similar cancer to me, he did all the right things, surgery, chemo, radiation and his cancer is back again. Again, I also know this may not happen to me.

What I'm looking to do is to try and combat it with laser treatment, photodynamic therapy or maybe something else i don't know about yet. I know these treatments are not the norm for my type of cancer, I also know these treatments my not cure me or get all of it, but as my brave mate Mal shows, neither does the suggested surgery and treatments.

So I'm hoping there are people out in cyberspace that may know of possible treatments and maybe point me in the direction of people who may help.

Thanks for reading my post

My very best to you all

Len

[Jules2]

Hiya

I am from Bunbury also and same/simlar cancer.  There are some clinical trials being done with Keytruda and they are getting great results.  A woman that I met via a cancer group in Melbourne has had a recurrence and recently received more chemo and Keytruda.  I understand how you are balkung at some of the treatment on offer as it is just so invasive with this type of cancer.

Jules

[len1969]

Hi Jules2

sorry to hear you are going through what I am. There may be something in the water in Bunbury. 

Jules, Thankyou very much for your reply.   keytruda hey? I'll have a look. 

What treatments, if any have you received and how successful have they been?

i sincerely hope you are travelling well and keeping your head up. 

My your treatments be swift and successful. 

All my best 

len

[Pinkroses]

Hi Len

Thinking of you, if that's any comfort

pinkroses

[len1969]

Hello Pinkroses

Thank you for your thoughts, they are of immense comfort to me. 

Souls like yours make the world a better place. 

Thankyou again

My kindest regards

Len

[Pinkroses]

Good morning, Len

I do wish I had some answers for you.   Reading about you puts all my little whinges to shame.   Still thinking about you, though, so may you have the best day you can manage today.

Bless

Pinkroses

[Jules2]

Hi Len

I am 6 years post treatment.  I had chemotherapy for 3 months and then 39 hits of radiation combined with cetuximab.  So far so good, but of course live with all the side effects such as dry mouth etc...