My name is Greg and I am a 54 YO man that was diagnosed with SSC of the tonsil on April 2. I was very fortunate that my dentist caught it during a checkup and was immediately referred to a great oral surgeon with connections to the team at the University of Washington Medical Center. I am almost halfway through my treatment and hoping that things continue to go as well as they have so far. Toughest part was the first chemo treatment because I wasn't 100% certain of what meds to take when and got pretty sick. Also it took me by surprise to completely lose my taste sensation with my first chemo. Thought I might tough it out and not need the tube that was placed before treatment, but have realized that it's probably smarter to take advantage of it to help keeps the calorie and liquid intake when eating is such an unsatisfying experience. Wow, what we take for granted.
I have received a lot of good info from this site and appreciate everybody's effort in compiling info and adding their personal experiences.
Hi Greg! Welcome to OCF! Sounds like you are doing pretty good getting thru your treatments so far. Keep up the good work with your hydration and nutrition and you will sail right thru. Keep an eye on your hearing as cisplatin can cause some loss of high frequency hearing in some patients.
Best wishes with everything!!!
Hey Greg, this seems to be the common age for tonsil cancer. I took the surgery route, so different challenges than chemo. A few months ahead of you and glad to report life gets much better soon after treatment. Keep us posted !
Have they tested your cells for HPV?
Even with the tube you must continue to swallow daily so the muscles don't "forget" how to swallow.
What chemo and frequency?
Good luck with the Tx.
Hi there... Welcome - rads isn't easy but it is doable...
and there are a lot of people here who've been where you are now so despite the fact that you had to join our little club (bad news) there's a lot of support and info to be had here... Hugs...
and take care.
Hi Greg and welcome. I too, got my tube in before I started treatment, as I'm very thin without so much as 5 lbs to lose. I'm now starting my 6th week of radiation (and will have my 3rd Cisplatin treatment on Tuesday). So far, I've used my tube for practice (thought I better know how to do it, just in case), and right after chemo....I'm still swallowing well for this far into treatment (tho many things sting, so I have to be careful)...Oh, and I have lost only one lb. so far...
Lots of support and knowledge here....glad you found this board.
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Hi, David,
I am HPV16+. The swallowing has not been a big deal yeat at 5 weeks in.
I'm getting three rounds of Cisplatin and 33 rads IMRT
Ugh, I had the "three big bag method" and it wasn't fun. Good luck and please ask any questions you may have. Unfortunately your worse time is yet to come but be sure we will help you as much as possible and you will walk out of that nasty tunnel.
Greg, adding my welcome. You're getting rads and chemo, I had rads and surgery, and both about the same age at the time. I wish you all the best. As others have opined, the treatment is tough no matter what you go through. But doable, and you sound like a strong guy.
Hang in there, buddy. We're all pulling for you and here for whatever you need.