Round 3!!!

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Hi All,

Just thought I'd post to see if there's anyone out there still going through the motions like myself?

I think it's fair to say I was probably thought of the one who wouldn't be returning after the first time as I didn't have a neck disection or have anything other than 2 enlarged lymph nodes. But here I am again... after feeling smug for a year. 

It seems the stubborn bugger still hasn't left after round 2 (neck disection) and I'm currently awaiting another biopsy. Am I a conundrum? Unlucky? Or just have a blooming cell that thinks it's stronger than me!

Operation 2 on standby or immunotherapy if I prefer but I'm saving that as my get out of jail free card and a last resort.

Still smiling... and still putting off the will writing as it feels like it's tempting fate. I know... I need to sort it! I also need to sort the loft out! 

  • Hi Shab sorry to hear you’re back on the roller coaster 

    Fingers crossed. 

    Operation 2 on standby or immunotherapy if I prefer but I'm saving that as my get out of jail free card and a last resort.

    Would they offer you both together? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi Dani,

    It hasn't been mentioned to have both together. An op is possible (deep under base of skull/jaw line). If I go for immunotherapy my understanding is it's 2yrs max. If that didn't work it's too late to operate. 

    I've checked re outcomes (we get wiser) and bottom line is hindered use of tongue and swallow possibly affected. 

    I've not had a choice before. 1st time around I was told neck disection wasn't an option as too complicated. 2nd time they took lymph nodes and muscle. Had frozen shoulder which after nerve twanging has resulted in a winged scapula. Now told it'll never really get better.

    This one I reckon as they're tiny at the moment be best with an op. I darent risk wasting immunotherapy so soon!

    What do you think? Should I be delving into more questions?  I've learnt so much so far but there's always more! I'm much better equipped than 1st time around Wink

  • Ps... im still not tasting coffee like Costa Rica Joy it still smells horrendous. I have managed to develop a liking for la mumbas though, determination was key, shame they resemble chocolate fortisips!

  • What do you think?

    You need to ask more questions. I know there are trials suggesting that for some cancers offering immunotherapy as a first line treatment along with surgery and RT improves outcomes. Early days though but maybe there will come a time when we see IT as routine. 
    Let us know how it goes. And huge hugs. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Ps... im still not tasting coffee like Costa Rica

    Do you know the day I could was a ridiculously happy one. Simple pleasures, eh? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • I've had radio already, so that's definitely not an option. I think my consultant is really switched on as I badgered her loads about the vaccine for us finishing treatment and gene tests to see if we're likely to have reccurance. 

    I'll put it to her though and see what she says. I'm under the impression it's total removal and I know in previous conversations they don't want to make you ill if they can avoid it. 

    Know money comes into it somewhere... but immunotherapy is on the table, there wasn't a delay in offering it. I think this is residual rather than recurrance... so my thoughts were to save immunotherapy as a last resort.

    Thanks so much... really appreciate your thoughts and support though. As ever the best around!

    And I'll update... im not planning on going anywhere! X

  • Oh I definitely skipped on the days things tasted as intended. How you really appreciate it now. I still revel in some things...  some even muster up a bit of saliva which is novel!

  • Sharon bugger. Hugs I’ll text you tomorrow. We’re over in Spain. 

    hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help