#96761 06-05-2009 12:01 PM | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | Just to let everyone know, I have 5 weeks down and 3 more to go. What a difference a week makes. I now have a lot of sores in my mouth and my voice sounds like the manager of Rocky [Burgess Merdith I think].
The Rad Dr gave me a script for some type of gel that will help with the mouth pain and sores.
I am now eating about 1500 calories a day by mouth and still drinking a lot of water.
I am still working and plan to until 6/17/2009.
Once again, thanks to all who share their journeys, it makes it easier[if easier is the right word] to travel mine.
Bye for now, I'll keep you all posted as I near the "end of the tunnel".
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | 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 | You need more calories each and every day or you are walking into a minefield.
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: Apr 2009 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | I have lost 15 lbs. and my dr. seems to think I will be fine. What kind of mind field? I don't understand what you mean.
Last edited by wfc; 06-05-2009 03:33 PM.
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | I think you misread "minefield" as "mind field." I bet he's referring to risk of dehydration, greater difficulty healing and maintaining your strength. Curious--did you ever get the PEG tube? John's scheduled for middle of next week...was day 8 of treatment today.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Apr 2009 Posts: 128 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Apr 2009 Posts: 128 | Not yet. The doctors are still taking a wait and see approach. They are saying that since I only lost 15 lbs so far, I may make it through without a peg since I only have 3 weeks left.
Believe me when I feel myself getting weak, if the Drs. don't talk about the peg, I will. Right now I feel fine except the mouth and throat issues. As if they are not enough to deal with!
Your right the other posting did say minefield, still wandering what that means?
Good luck to both John and you on your journey.
Age 57 at dx on 3/30/2009 by Dentist
SCC of R tonsil S2 Poorly Differentiated - 2.5 cm
Rad - IMRT 5x a wk for 8 wks starting 5/4/2009
No Chemo
Last Rad treatment was 6/26/2009.
Two years down as of 3/30/2011!
God bless all affected by this monster called cancer!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | WFC
The worst of treatmetns are yet to come. Sounds like you are doing a great job at hanging in there thru this so far. Im hoping you continue to get thru this so successfully. From here out, the next weeks will be increasingly more difficult for you.
Right now you should be upping your calories and water consumption. While going thru treatments 2500+ calories and 64oz water are minimum. This high amount should continue thru til you are a couple months post treatment. Your body needs extra calories to fight this and heal. At one point I was consuming at least 5000 calories per day. Some days was over 7500 and I still didnt gain an ounce.
Best of luck.
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 | What I mean or meant is that I personally don't think you should only ingest 1500 cals a day. That may be enough for you under normal conditions but your body is under attack from the cancer and the effects of the Tx so it needs more "fuel" right now. If you continue to loose weight which is a strong possibility since the worst part of the Tx's effects are probably still to come then the minefield I am talking about is what happens to your body as you loose weight, i.e., (and not necessarily in this order) weakness, constipation and nausea all of which kind of snowball and feed on each other all to your determent. Believe me I KNOW.
I would target 2500 to 3000 cals and 48ozs of water each and every day until you are at least a month or so post radiation.
JM2C's
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 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | wfc,
Are you working with a nutritionist? I found mine to be a great source of food support during treatment and I highly recommend you ask for a referral if you don't have one. Knowing how many calories, and protein, your body requires is incredibly helpful. I was on around 2100 cal/day and didn't lose any weight during treatment which was a good thing.
- Margaret
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: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | WFC, I agree with David you will need somewhere between 2500-3000 cals as minuim now. I like some did this without a PEG and the last 2weeks I drank 4000 cals aday just to maintane my weight. I saw a nutritionist every week until 2 months post TX, as she was part of my team. Good luck. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | wfc both literally and metaphorically, David's use of minefield is clever: first, the good old Miriam webster Dictionary definition of minefield: : "something resembling a minefield especially in having many dangers or requiring extreme caution for example: a political minefield." applies to this period of your TX. And on a more poetic level: one false step here buddy and you can kiss your a** goodbye then again, some can just blithely skip thru a minefield unharmed. Here's hoping you are in this latter category. Keep vigilant and stay strong. I could not force down more than 2000 calories without the PEG and I made it through the first time. And watch your step  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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