New here-hello

Hi Joe

Welcome to the group 

Tough times for you, have you been given a treatment plan from oncology?

I'm 16 months post treatment for T2N1M0 Tonsil cancer 

Peter 

Hi Joe and welcome.

I am so sorry things have got so much worse for you. You illustrate perfectly how long term effects can get worse many many years later.

50 rads and Taxol is really awful  treatment. I know it won't be any consolation to you but treatments have progressed in those years, becoming more tailored, more targeted and less intense. 

Do stay with us......

Where do you live, Joe? There may be a long term effects clinic near you

Hi Joe, welcome to the group from me. Sorry you are having these problems so far on. I was at our local Swallows meeting a couple of weeks ago, we had a lady from the Radiotherapy late efforts service, come to give us a talk. It was very interesting what she had to say, you could check to see if your local hospital, has such a department, it could be helpful for you. 

Ray.

old biker said:

we had a lady from the Radiotherapy late efforts service, come to give us a talk.

Who was that, Ray? 

She is The Late Effects Radiographer, at the RCH.

Hi Joe

A warm welcome to the group. I can only try to imagine what you went through 29 years ago .. having only had 35 sessions of radiotherpy and 2 overnight chemos which have already left some serious side effects.

I have the same limited area/ swallow plus issues with chocking , can tolerate feeds meds plus a  few  soft foods orally but still have feeding tube in stomac Th chocking on mucos or food are both very scary but sadly part of daily life for some of us.

Have you tried any physio for your leg ? Im being sent to phsio for same issue but in my left arm my ENT also tried putting tiger balm down arm , felt cool but didn’t change anything. Speak to your Hospitals H&N Cancer team to see if they have any ideas moving forward.Aslo ask them to speak to speeach and language dept to see if they can offer any advice ..

Thanks for sharing Joe surviving this for 20 years is amazing but I totally appreciate and understand how difficult life is with the side effects.

Debbie 

Welcome Joe, sorry you have to find yourself here.  How miserable for you.  I am only at the start of my Tonsil cancer journey (having the mask fitting tomorrow.)  WOW, just as you think it's all over life throws you another curve ball.  Hope something can be sorted for you soon to alleviate your misery.

Big hugs

Hazel x

Hi Ray, 

Thank you for your idea. Right now I go to Dana Farber in Boston to see a Survivorship Doctor. Unfortunately they don’t think there anything that can done to help. I am age as best I can as I do not at this time want to give up food. The swallowing techniques are difficult to do. Lots of coughing and phlegm. I will keep in touch through here. I am still pretty upbeat and not depressed as I just retired to concentrate on my health. 
Joe

Hi Hazel, 

Thanks for the kind words. One thing I can do is show people that you can survive this and I know that treatments are better now than when I went through it. I’ll be ok. I still have my mask . It just reminds me of how tough I was going through the treatments. Hang in there. 

Joe

You certainly are tough Joe, and I hope I can be as tough as you.  Take care.

Sending hugs

Hazel x