#78970 08-19-2008 05:24 PM | Joined: Aug 2008 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2008 Posts: 38 | Today was my simulation. I will start concurrent Chemo/radiation on Tuesday the 26th. Cisplatin 3X at 21 day intervals. IMRT 33 days. I was diagnosed back on the 6th, I am anxious to get started.
Thanks for all of the advice given, looking forward to hearing more.
Bill age 47 at Dx, non-smoker
1st DIAG: 8/06/2008 SCC BOT T4N1M0
2nd Diag 10/14/09 Mets in lungs
3rd diag 06/23/2010 Primary Site malignant Hemi-glossectomy July 2
In surveillance post re-IMRT and Carbo. Lots of scar tissue, hi-FDG Uptake on PET, no lump. Feel Fine, CLEAR for now.
| | | | 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 | Bill
Hoping you go thru treatments quickly, painlessly and easily. Its a difficult road towards the end. Just keep eating minimum 200-300 calories. If it gets to a point where you cant eat, then use the peg tube. Take in minimum 48 oz water daily and swallow as much as you can by mouth.
Try to stay ahead of any nasuea you may encounter. Make good use of the peg tube by taking meds and getting extra fluids. If you are able to eat by mouth now is the time to cram in all your favorite foods. Enjoy bread, chips, steak, mexican food, I could go on and on, just eat it now. It could be a while once you start treatments before your taste gets back to near normal again.
Best of luck with treatments. Please keep posting any questions or updates you may have as you go thru this.
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: Mar 2002 Posts: 4,918 Likes: 67 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 67 | I think that was a typo, you meant 2000 to 3000 calories per day right?
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Bill
It is good to get started with the treatment. Although it is rough it will be over before you know it.
You have read the posts, the advice re food (2000-3000 calories), water thrush and so on is good. Christine is right. Go eat, now is the time. Especially steaks, good crusty bread, chips etc!
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Yeah! Pack in that food right now while you can and it all tastes good, and the best tasting stuf usually has the most calories! Pay no attention to what kind of food it is because shortly you will be on the Radiation Weight-Loss Program!
Good luck with the radiation crew -- I went back for a visit after I had recovered from the effects and they were all glad to see me -- They said it is sometimes discouraging for them to take relatively cheerful people and gradually turn them into weak, passive people -- They like it when someone healthy again returns for a visit.
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | 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 | Bill,
I would ask about weekly Cisplatin treatments vs the Big 3. In the last year or so I have seen many here say they got the weekly and didn't have the complications I did. Of course I'm assuming it's just as effective getting weekly vs every 3 weeks but I would ask if I were you.
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | The weekly course SEEMS to make more sense. Depending on excretion and metabolism you have a higher sustained concentration of the drug even though the dose is typically 1/3 of that of the 3 time schedule. The latter has a higher peak concentration ..... and more side effects. It depends what is more effective sustained or peak drug level.
Scanning the web I did not find a direct comparison. There is some info for other type of cancers, some of it quite old.
Brian any info you are aware of? I would be good to get a definite answer on this if possible.
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | Joined: Aug 2008 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2008 Posts: 38 | Thanks to all, I will ask about weekly vice the 21 day interval.
I have a new favorite eating place; Ted's Montana Grill (even if he's married to Hanoi Jane). Bison meatloaf = g o o d.
I never thought I'd hear a military Dr. tell me I could not afford to lose weight. I am 6'0" and packing 238 pounds. When the going gets tough the fat get skinny and the skinny perish, I am a survivor.
Bought a new blender yesterday.....
Bill age 47 at Dx, non-smoker
1st DIAG: 8/06/2008 SCC BOT T4N1M0
2nd Diag 10/14/09 Mets in lungs
3rd diag 06/23/2010 Primary Site malignant Hemi-glossectomy July 2
In surveillance post re-IMRT and Carbo. Lots of scar tissue, hi-FDG Uptake on PET, no lump. Feel Fine, CLEAR for now.
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | (psst... Bill, Ted Turner and Jane Fonda divorced in 2001!)
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | 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 | Wow, huge typo!!! Thanks for catching that Brian. It should read 2000-3000 calories per day. Sorry
Bill, glad you have a blender, you will need it down the road. Eat like crazy now so you wont feel like you are missing out so much later. Ive lost 65 pounds and kept it off for almost a year now. Bulk up cuz it will come off even if you try to prevent it.
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 | | |
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