#68963 01-31-2008 07:32 AM | Joined: Jan 2008 Posts: 67 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hi i am new here i found this site and loved it i didnt know there where so many of us out there.
My story i am 39 years old got told by my Dr in Feb that the lump i had in my mouth was nothing to worry about, by september it was huge and i suppose i aready knew what it was, i was right had a biopsy done came back stage 4 base and right side of tongue cancer.
started treatment in October 35 rads 3 Cisplatin (spelling sorry) here i am the end of January was told yesterday i am clear of cancer (clinical) i have to have my follow up Cat scan middle of march...fingers crossed.
thanks for reading
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi there and welcome.You will certainly know by now that you are not alone and that you have found the perfect place for any help or advice you may need over the next few weeks.
Look forward to reading your posts.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Cograts on being told that it was gone and I hope it stays that way.. You have all my prayers for your future.
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: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Wonderful news for you and will be thinking of you in March as you approach your scan.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hello and welcome. Thats great news that your scan came back all clear. I hope for the same results for all other scans too.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | 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 | Aunty,
You will be eating breads before long. It took me 16 months post Tx but now I can eat them in any fashion so hold on, the recovery is slow but it will happen.
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: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Thank you all so much that was a nice welcome, its so nice to have a dedicated head neck cancer site to go to.
ChristineB sorry for the confusion i havent had my scan yet just been really looked over by my rad Dr and ENT both been working in this field years and both gave me a clean bill of health my Dr also said he isnt worried about my scan at all i really trust him (im lucky) i will take this relief for now and think healthy each step is a a milestone so for now im happy.
Dave thank you that was so nice to read ooo yummy look out tuna mayo here i come, did you get your saliva back then?
thanks again read you soon
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | 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 | Aunty P,
My saliva is still not 100% but my taste is almost there and since I want taste way more than saliva, I'll be OK if my recovery stops at this point.
The recovery was a long and frustrating time for me and for most. There were many times that I thought my taste was finished improving but it has taken a big turn (in my mind) in the last 2 months so maybe I'm not finished yet. I'll keep you posted.
I also did a post when I was 4 and 5 months post. If you would like to read them, let me know.
Yeah, tuna, mayo on whole wheat not toasted sounds good to me right now.
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: Jan 2008 Posts: 67 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jan 2008 Posts: 67 | Hi David,
yes id love to read your posts it helps a lot to know all i feel is normal im sure you know what i mean.
my taste is already getting better, at first everything was so gross cant even put into words what the taste was, but now chocolate almost tastes normal i can taste salt so im on my way the pills i have are really helping with my dry mouth and throat.
look forward to reading you
Age 40 Diagnosed with stage 4 SCC tongue, sept 07 started 35 radiation treatments and 3 chemo Had my first follow up PET - got the all clear 17th April 2008.
26th Had my PEG tube removed...eating almost everything. Was hard but learned to eat without saliva, it's so good to chew and swallow food!
| | | | | 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 | Just sent you a PM. Ant questions, just ask.
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.
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