Base of Tongue with spread to Lymph Nodes in Neck

Hi Dann0  56. Thank you for reading my blog. Looking at your name I reckon you’re a year older than me. If I can do it anyone can I was born in in 1957 or maybe you’re 56 ? I told mt story as it was remember not everyone gets the same side effects. I presume by scary you made my photo of my last day of treatment my neck band because one of my lymph an hour or so close to the service that the radiotherapy was always going to cause issues. As you can see from my photos it was only temporary as long as I wear factor 50 I can continue to do things as I’ve always done have As you can see from my photos it was only temporary as long as I wear factor 50 I can continue to do things as I’ve . Good luck for your next appointments and keep in touchalways done that done. Our motto is one life live it and that’s what we do. Good luck for your next appointment and keep in touch.

Hazel

Ah thank you. It’s a bit of an indulgence now. If it helps somebody it’s worth it. 

Thanks! That is weird indeed! I'll definitely ask for eye holes. 

Helen x

Hi Dan, I have been helped so much by this group.  I was diagnosed with exactly what you have and am currently two weeks into the RT treatment.  I have just reached the point that I can no longer swallow, and now have quite a sore throat. 

I have lost oodles of weight, as I firstly had a peg fitted, which cost me 4 kilos due to problems (I think I was unlucky), and have lost another 2 kilos over the last couple of days through not eating.   I am hoping I will get some food for my PEG on Monday. 

As you can see, it is very easy to lose weight, so feed yourself up now

Good luck, Andrew 

Hi Andrew, Thanks for connecting. I'm going to try and bulk up some although I could afford to shed at least 5-kilos that I gained during the lock downs. 

I'm familiar with the PEG which I assume is to assist with feeding. I'll see what I can find out online.

I hope we stay in touch as we may be able to assist each other with our different experiences as my treatment will be in Kingston, Ontario, Canada. Treatment might be a little different 

I'm a 66 year male in reasonably good health prior to the cancer diagnosis.

All the best, Dan

Hello All, I've had my CT scan and fortunately I'm clear from the the neck down. I have one large lymph node near my thyroid and three smaller ones near by. I'll be starting treatment within 10-days. They've asked if I would be part of a clinical study for immunotherapy to which I have agreed to. It look very interesting as it trains your t-cells how to recognize cancer cell and destroy them. Hopefully it may work at a future date if cancer returns. Anyhow, I'm sure you are all familiar with it. It will be combined with iMRT radiation treatment. I'm scheduled for 35 days of the radiation treatment. I've been fitted with a mask and have been setup with both a speech therapist and a dietician. I'm looking forward to getting on with it but not the side affects.

Thanks for your support.

Dan 

Great news Dan 

What’s the name of the trial? 
There are a few of us who gobble up new news. 
IMRT is gold standard and what all of us get apart from the few on Proton. 
Let us know how you get on 

Hi Dan, great news. I have same diagnoses as you, starting RT 30x and 2 chemo on 13th June. 

I was asking my oncologist for proton bean treatment, but not sure if in UK is so advanced as in Europe or US?

I know there are still quit new in here, but good luck with it!!! 

I am sure in here are some with more experience with similar trail?

Will wait to find out more from you,

Marta x 

Only two NHS centres have it 

Privately the Rutherford do. 

I haven't met with the immunotherapy specialist yet so I don't have any trial name or details. I'm expecting to hear from them early this week.