Hi Mandy

Sorry to hear of your long illness.

Sounds pretty scary given the family history and quite enigmatic with no definitive diagnosis. I would guess at infection rather than something more sinister. I hope the experts get to the bottom of things and able to resolve matters. 

Wish you better. 

Paul. 

Thanks Paul,

Yeah me too. Seeing as i was told i had tonsilitus i was pleased enough to take antibiotics but ddint seem to help much. And knowing what my family went through i'm hoping it isnt anything sinister, but i would rather be ready for it, than getting dissapointed or shocked.

But how you getting on now after your treatment?

I hope all is well

I may update my posts after getting referred

Thanks

I am great thanks.. and emerged from the hellfire of treatment for hpv+ driven squamous cell tonsil carcinoma and involved neck lymph node relatively unscathed. It will be some time before I am out of the woods and in the worry-some 18 month post treatment period. All checks are clear and now, aside from a few scars, back to normal. 

If pressed and since you asked; my sense of taste is still slightly off kilter and salivary output needs supplementing eating some foods. However that is all pretty intermittant and simply an odd inconvenience. Nothing to write home about.

The treatment for such a diseased tonsil/lymph node is really horrible and, I am told, one of the worst to endure. I look in here occasionally to see how others are doing and it does provide an excellent support network. 

Ah well.. a year on and I am fine thanks. Aside from a shoulder dislocation nerve injury I gave myself foolishly free climbing.. or rather falling from a cliff in Mustang, Nepal late October. I fell 15-20 metres and lucky I did not break my neck. My backpack acted like an airbag and cushioned my fall onto rocks. Stupidity defined. I just cannot stay away from hospitals! 

Your mystery condition sounds baffling. I really hope you get an answer to it all.  The most valuable thing we have is our health.  I hope you regain yours soon.

Paul 

I'm glad to hear you're well! I

hope you many many many healthy and happy years in the future.
I've not really looked into any information about treatment so i have no idea about it, noone deserves it.

Im assuming the sense of taste will heal in time? i mean it isn't the worst side effect, but i don't know what i would do if i couldn't taste tea XD.

Well, i'm glad your in one peice after that! i can't imagine how falling off a cliff like that felt, but as long as you're okay!  You've got a pretty strong body there, take care of it :)

Yeah, it could be something small and insignificant, so i won't dwell on it too much, but its the waiting thats the killer. 
Thanks i hope you stay safe and well.

Hi AHLAM

I hope you're not feeling too anxious. Waiting and worrying was definitely the worst for me and I think a lot of others on the forum.

In short I felt fine other than a little fatigued from time to time. I'm quite young and healthy so it was noticeable in that regard. Attention was first brought to my right tonsil by a local GP in mid October 19. Up until 4 December I though I had tonsillitis. Then a second opinion from an ENT sent me for a PET scan on 5 December 19 which confirmed I had two tumors. One on my right tonsil and the other a neck node. I'm now halfway through radiation and chemotherapy. Taking it all well although eating now becoming a chore and wake up in a bit of pain sometimes in the night.  I know it's not easy but please try not to worry too much between now and receiving your update. Stay off Google. Be patient for the medical advice. 
 

all the best

Mike 

Hi Mike ,

i'm glad that you're halfway ,  you'll be fine and will soon finish your treatment , keep strong and ambitious about google yes its so frustrating to keep searching and googling things there are so many symptoms i just got confused really , i 'll try not to look and wait for the scan thank you so much for your reply , Good luck with your treatment, you'll be Fine !! 

good luck , best wishes 

Thank you. Wishing you the best. 

Hi Mike

Hope the treatment is going ok. Unfortunately it does get pretty rough and found it most unpleasant for the ten days after my radiotherapy finished. 

Were you offered a PEG? 

I had not heard of Proton therapy for tonsil/lymph node involvement before you mentioned it. However appreciate from the current literature that robotic surgery is a very good option. My ENT consultant regarded that as the best option but unfortunately not available where I am in the UK. 

I do hope all goes well with your current treatment and that it leads to a good resolution.

Wishing you all the best.

Paul  

Hi Paul

Thanks for messaging. 

I wasn't offered a PEG as it was thought that I wouldn't need one. And thankfully it appears that way. After holding off on the pains meds until week 4 I'm now fully loaded up with both slow and fast release Endone. Now also on exclusive liquid prescribed diet save for some soggy cereal and maybe soup in the evening. Now pain is under control and weight being held I am again feeling optimisitc as I enter the home straight. 

Last day of third of four cycles of chemo today. Final three day cycle 3-5 March. Two more weeks of radio left.

Flights to Queenstown locked in for 2 weeks post PET scan in June. Bungy jump booked too! Petrified of heights but nothing will ever hold me back once I've beaten this horrible illness that so many of us have had to endure.

All the best, to Health & Strength

Mike