| | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) |  "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Ask for the 7 weekly Cisplatin doses as it is much more tolerable than the 3 'big bag' method.
Also, start eating everything and anything from now onwards - the extra weight you put on now will carry you through the final stages of treatment!
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | 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 | Have your TSH levels checked asap and record that number in case your thyroid craps out like many of us due to the radiation. Your "normal" TSH level is what you need to get back to if that happens.
Did they get you fluoride trays? If not, get them.
Don't use that feeding tube unless critically necessary. Keep swallowing often throughout every day to lessen the chance of becomming dependent on the tube post Tx.
Consume appx 3000 cals and 48 ozs of water each and every day from now thru at least your 1st year post Tx.
Good luck and we'll be with you as much and as long as you want!
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: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Waldeau, I second and third everything my fellow David just wrote!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Dec 2012 Posts: 26 | WOW! What a wealth of knowledge! Thanks all! I will follow up on ALL of the ideas you've put forward. Nothing like talking to somebody who's been there.
SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | After each RX treatment don't forget to Stretch you jaw muscles. Yawn and open your mouth wide, this does help from getting 'lock jaw'.
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Take a look at the OCF page on Trismus which is what Mickey means by "lock jaw" (which actually comes from Tetanus not radiation). Trismus OCF. You will see that Trismus usually comes after the radiation TX. It's very common, even if you did yawn and stretch after each radiation TX. Good info on the OCF webpage. I found the Therabite very helpful as this third round of radiation did bring back the Trismus. Charm
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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