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Joined: Sep 2006
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Fishing weights in your pockets!!! Boy I thought I was bad when I was a kid and would put the thermometer on my bedroom radiator just so I could stay home from school. Worked a few times until the thermometer exploded, then my mom always stayed with me while taking my temp. Boy, talk about lack of trust! Scarred me for life.

Re the VHC...I really didn't mind the VHC. I really enjoyed it mixing it half and half with whole milk during my recovery when eating and I use that term litely was unpleasant.


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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Kate

Thanks for that bit of California sunshine. I love San Francisco and my jobs used to take me out there every year for a week at a time (and sometimes 2 or 3 times a year if litigation was going on) for almost three decades. Oh yeah, and I actually did wear flowers in my hair. Lots of great memories (some sad ones too with my little brother dying of AIDS in SF General in 1984). I am getting ready to head out to the cancer dentist (I know he prefers prosthodontist)this morning, then an afternoon MRI in preperation for biopsy.
PEACE & LOVE


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Posts: 3,082
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David

And I thought the thermometer trick only happened in the movies. But then again, your life sounds like a screenplay in some aspects wink Never thought about diluting the VHC. Trying to keep my no major surgery roll going here in this Cancer journey. Thanks for giving me today's smile.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Jan 2009
Posts: 33
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Posts: 33
I joined this forum last night after being super paranoid by a sore tongue and looking around the internet for help. I have to agree that the worst part of this entire ordeal is the fear of recurrence.

I've only been in remission for a couple months and this week marks the second scare I've had. I burnt my tongue on some hot coffee the other day and have become paranoid that the persistence of the burnt area is the cancer returning. (I already have a regular check-up scheduled for next week, so unless this gets worse, I figure I'll just wait for that.)

The first scare I had actually turned out to be a small piece of gauze that got stitched into the side of my tongue during surgery. A little light-colored mass sticking out the side of my tongue a few weeks after surgery about scared me to death, but when I went in to see the ENT about it he seemed to find it quite funny. I suppose in retrospect it was.

Good luck with your MRI/biopsy! I hope the lump really is just a lump. smile


9.29.08: Dx @ 24 w/ T2 SCC, tongue
10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad.
10.06.09: Recurrence in l. lymphnode
11.16.09: L. neck dissection + lost nerve XII
12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG)
02.15.10: Done with treatment!
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I would have to say one of the worst parts of this disease is the fear and waiting . I dont know that , that part of it ever leaves us , even when we are in remission for 10 years.

That and the fact the ages are getting so much younger with no "standard" risk factors. I see your age Jen and wow .. When I was diag almost 2 years ago at 35 ..in my area that would be like 4-5 counties in NY ... I was the youngest Dr had seen.

Charm I sure hope this proves to be nothing . I will be waitng here with you for the results .

Shar


T1NoMo Left lateral Border of Tongue. 35 at DX
Partial Glossectomy , Modified Radical Neck Dissection
All Nodes Clear... No radiation
Frey's Syndrome & Trigeminal Neuralgia as result of surgery
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Jen

Welcome to the OCF Forum. This is a great place and unfortunately is getting lots of new YOUNG members like yourself. Don't be embarrassed or bashful about letting your ENT know about your concerns on the burnt spot so you can get the reassurance you need. This journey is scary. Arizona is lovely and Phoenix/Scottsdale was the very first trip my wife and I took to celebrate my recovery. We went around Valentine's Day last year- they had a cold snap but it was warmer than Northern Virginia. So much sunshine. Thanks for the good wishes.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Shar

I could not agree more that the constant fear of recurrence is troublesome. Only OCF posters (whether patients or caregivers)seem to truly understand what we go through when "something" appears. I am dismayed about young women like yourself and Jen joining our little club - it is so unfair. I hope to have the biopsy done and pathology report by end of month. Heading off to the MRI in an hour. Thanks for the support.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Aug 2008
Posts: 531
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Posts: 531
Charm for me it is not just when something appears but general over all feelings and the unseen that seems to bother me too!!! Like an ear ache or headaches or fatigue all things that seem to make me go hmmm...Time seems to stand still when we are waiting. I know there will always be a nagging feeling but I am hoping it gets easier....



Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
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Dianne

From my own perspective, your feelings at less than six months after TX seem very familiar, esp ear pain. But in my case it has gotten better, and I believe it will get better with time for you also. It's okay to be prepared for the worst, but we also need to expect the best. It's normal to be scared when there is real danger. Still, no reason at all why you shouldn't be a survivor posting here a decade from now.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Joined: Dec 2008
Posts: 126
Senior Member (100+ posts)
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Joined: Dec 2008
Posts: 126
Charm, I read your post about "flowers in your hair."We were hippies and also wore "flowers in our hair." We lived in SF and were part of the summer of love 1967. Richard smoked cigarettes from the age of 13 to 23, pack a day Lucky Strikes. In the fifties, many boys started smoking early. At 23, pot was so plentiful it was easy to quit cigarettes and switch over. He stopped pot about 30yrs ago. Since this diagnosis, we have suspected that the 20 years of combo smoking ultimately is the cause for this cancer. We'll never know for sure, but it's a good bet. The price is being paid for the past when everything seemed possible and we were all invincible.


Geri-CG to husband Richard, 62 yrs old. Former smoker, quit 30yrs ago, light drinker. Dx after tests with BOT T1N1M0. Tx to start by end of Dec. Seven wks IMRT with 2x Cisplatin-2x Erbitux. Peg in 12/08- removed 4/21/09. Looking good so far. Clear Pet &MRI 8/2/09
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