Post squamous cell carcinoma base of tonque questions

Tmack9200

Hi Everyone, I was diagnosed last May with Stage 4 squamous cell carcinoma, started at base of tongue and spread to lympnodes on right side of neck, 2 large tumors that turned into one big one... I'm 44 never smoke, occasional beer drinker.. I had no pain or symptoms at first, until I felt the lympnodes which came on rather quick.. 

   Any way 35 radiation treatments and 3 Cisplatin chemos all with months of pure hell and pain, due to the most barbaric treatment in the world,lost 60 pounds, dependent on feeding tube for 3 months, lost my voice for 37 days ect ect... Anyway enough of that, I got through it and now I'm 2 1/2 months post treatmen... Feeling better, but still hurts when I swallow food, throat feels like a bad swore throat, at least not like swallowing razor blades like it did for 3 months.. I have bad ear pain in my right ear, mostly when I swallow and I feel pain on the right side of neck where the tumors where... My tumors weren't gone when treatment ended, in fact there was no change in size until about a month after treatment, which ended in the end of August, during october the tumors turned back into two separate ones and then shrunk from there, but I still have small lumps that I can feel... 

Curious if anyone has experienced this Along with the continued throat pain and ear pain This long after treatment? I'm scheduled to see my ENT in early Dec and a petscan in January, the waiting is the worst part of all this... i had my port and feeding tube removed so I could get back to work, that was done 2 weeks ago and I've put on 10 pounds since.. I still take 5mg of oxycodone a day to take the edge off the ear and throat pain along with some advil... It's nice to eat again and overall I do feel better each week, just nervous about neck lumps...

 

thanks in in advance for any input you may have..

 

Todd

CivilMatt

Welcome

Todd,

Welcome to the H&N forum, it painfully obvious you have been through the wringer.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  Also, no pain to begin, just a lump on the left side of neck.

I did not have much pain, just extreme discomfort with throat, mouth and tongue (during treatment), which was treated with magic mouth wash (so good).

I hope your pain subsides and your next appointment goes well.  If I had any worries I would call for an earlier appointment.

Wishing you the best.

Matt

D Lewis

Pain

Hi Todd,

Welcome to the club!   Your story sounds just like mine, except I had lymph node involvement on both sides of my neck.  Barbaric treatment indeed.  When I was done, my doctor warned me that I would likely have a sore throat for the rest of my life.  (Operative word here being LIFE  ).  He was pretty much correct.  I am now six years out from end of treatment, still have a scratchy throat and frequently lose my voice by the end of the day.  If you haven't yet heard the words "new normal", you will.  

Deb

D Lewis

The lumps

Ya, and those residual "lumps"?  My Stanford doc referred to those as a "resolved fullness".  Takes some time for the remnants to dissolve away, as it were. 

Tmack9200

Thanks

thanks for the feedback, although not thrilled about the sore throat for life part:) Heading to ENT today for the first time since treatment ended,hopefully I'll get some good news on the tongue area, still have to wait until January for petscan..

 

Happy Thanksgiving everyone

phrannie51

You're still in the "baby-stage"

of recovery.  I do remember thinking, tho....how long does it TAKE???  My answer was one year before I started truly feeling back to normal.  Ear pain...I call them ear cramps cuz it sometimes feels more like a charlie horse than an ache....still have them.  Give your body time to come back....this wasn't the flu, so recovery takes time.

p

Priyawins

CivilMatt said:

Welcome

Todd,

Welcome to the H&N forum, it painfully obvious you have been through the wringer.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).  Also, no pain to begin, just a lump on the left side of neck.

I did not have much pain, just extreme discomfort with throat, mouth and tongue (during treatment), which was treated with magic mouth wash (so good).

I hope your pain subsides and your next appointment goes well.  If I had any worries I would call for an earlier appointment.

Wishing you the best.

Matt

My diagnosis is same as you

My diagnosis is same as you,diagnosed July 2017.Undergone 33 rads with 6 intense chemo with cisplatinPet scan came yesterday as no spread and tumour size shrunken.This was big releif and awaiting Surgical oncologist advice as he is not in country.Any advice what can i expect??