| | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) |  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Lyn,
I remember the break through pain I immediately felt when the ENT told me that I had Stage IV SSC and I had a 60% chance of surviving 5 years AFTER having a radical ND and 7 weeks of concurrent radiation and chemo. I asked what then seemed like important questions to me but now post Tx my life has changed and so have my life type questions. I guess what I'm trying to tell you is that you now need to focus on your Tx and your recovery period and then see what's important to you. I'm sure you will find a way to continue doing what you love so just focus on getting through radiation for the time being.
Last edited by davidcpa; 01-01-2008 12:44 PM.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2007 Posts: 18 Member | | Member
Joined: Sep 2007 Posts: 18 | Hi Lyn,
I asked the question about the tongue swelling to 4 different Dr's. and got answers ranging from "oh, it's still quite swollen" to "no, there's no more swelling", which was pretty frustrating. But, right before I started radiation, it had come down pretty far, but I still felt like you, that there was a golf ball in my mouth. Tomorrow will be my 14th day of radiation and it has swelled up quite a bit, so don't be surprised if that happens. I'm hoping it doesn't get too much worse, as my speech is definitely worse now. From what I've heard from all the Dr's. is that it will all get worse for 2 months or so, but then gradually improve. I was eating solid food, not everything I wanted, but it was getting a lot better. But now I'm just on liquid supplements and creamed soups. I lost most of my taste after about 8 treatments. It's just easier to drink things I can't taste than chew them.
As far as the singing, just keep at it. The Dr's. often are too quick to speak. Surprisingly, they don't seem to realize how much this affects us. I wouldn't accept his statement as my fate.This is your life. Keep at it. Are you going to speech therapy? I'm going to do that after radiation. My speech has improved somewhat, but I'm definitely not satisfied. I'm sure that could help you too. Best of luck to you!!
Jenna,46,non-smoker,non-drinker
diagnosed SCC tongue 9/18/07
patial glossectomy 10/22/07
IMRT ends 1/24/08
PET scan 4/16/08-all clear!
| | | | | Joined: Dec 2007 Posts: 46 "OCF Down Under" Contributing Member (25+ posts) | | "OCF Down Under" Contributing Member (25+ posts)
Joined: Dec 2007 Posts: 46 | thankyou Shar, Jenna and David and co thankyou...all i needed was someone else to say...well you just never know!" I think I will be able to sing again...but then Im still scared after the info overload I copped on my first coupe of diognosis visits which semed to consist of 3645 drs and their proteges all comeing feeling my tongue, looking concerened and then giving their prognosis (in med terms so I could only understand half of it...serves me right for not paying attention in biology and chemistry at school haha) Anyway thank you for the kind words. I wish you all well and I shall listhp an extra prayer to God for you all tonight! Love Lyn x 
Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Seeing as how I get started this Monday for Rad & chemo combined, I have read everythng here and will keep checkingin with questions. I feel you have gone thru it and the ones going thru this treatment will be very good in giving me advice as I join you in the Rad & chemo. I have no idea when the treatments will start , but at least I have an idea of what to expect .. Thank you all
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jim,
That's one of the many benefits of this site. There are so many that can tell you their bodies' reaction to the Tx which varies somewhat from person to person. You can rest assure that you will have as much advice as you ask for.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | LynfromOz,
That's really a shame that they took that attitude with you. Part of my treatment planning was how to get the most successful treatment and STILL have most of my old life back (including quality of life). We discussed this at length. I am also a musician, play bass, sing lead and b/u vox as well. I am playing a gig tonight, courtesy of my medical team, and did 5 services for Christmas at my church as well. My voice is about 1/2 octave lower than it used to be. Don't give up hope...
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Gary and Lyn
If I have some palliative radiotherapy, does that mean I'll be able to sing properly?????
My friends and family would be so relieved if I could!
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I appreciate your gallows humor Brenda! You just just might be able to sing again after RT;-)
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I couldn't carry a note before and Tx didn't change that one tiny bit either way. Man I always wanted to be a rock star.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | With all the drama this disease presents we're all rock starts -We just don't have the money and papparazi to show for it ;-)
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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