| | 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 | Jim sometimes it is the little throwaway remarks that have the biggest impact.Your comment about Robin had me howling,and you bet your sweet ass he will be watching you. Learn from his mistakes Jim and listen to all the people here who love you. 
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: Jan 2004 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | Hi Jim,
Thinking of you as you're having rad #7, and chemo #2
Forgive me in advance for pestering you to take care of yourself and do what you need to do to get through treatment so you can get to the steak waiting for you on the other side of it that we know you want! Manage that pain Jim so you can get the nutrition you need, and don't be afraid to ask for help, if your needs aren't met, you aren't asking the right person.
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | LOL Malka. That one had me laughing out loud.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You people are so great, it puts tears in my eyes. Especially Cookeys' . The nurse in Rads asked if she could look in my mouth. I opened it and she amost fainted. She called the other nurse to have a look too. This one just winced as if in pain and aked me how in the world I can eat anything. I told her it pained , but I can get some things down if the are almost liquid,, The DR wanted to give me 200 percs but I declined and took a prescription for 100. I stopped at Sam's club coming home and bought a case of Campbells Tomato soup , a case of chicken broth and 2 large boxes of the original club crackers. I already had a can of Daves carnation , a can of checken broth and 1/2 pack of the crackers. Thanks for getting on my back all of you great friends. I knew my mouth hurt but didn't know it was that nasty. ((((hugs for all)))
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Good for you, Jim! - sounds like you are staying on top of things. Make sure and keep records so you know how much you take in every day (keeping a record of the outgo is good, too) . I know it has got to be pretty awful inside the mouth. My son would not let me even see inside - he even had trouble opening his mouth. I'm sure I would have fainted if I had looked inside. I'm so glad you are a fighter!
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | Jim,
Believe me you wouldn't want me to be your CG!!! I am sympathetic with my female patient but I don't think I would be as tolerate or understanding with a male one so keep me out of this picture or you would call it a horror flick.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Done deal Dave LOL.. I think I'll just take Dell 1064 as a CG. Maybe I can handle her punches. You are all right, I do need a CG to look out for me. One day maybe I can find one.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jim,
Don't buy cases of anything for a while, like a year. You will find that what may appeal to you today will nauseate you tomorrow or the next day. You will be going thru some turbulent mouth and even mental changes for the next several months so just go with the flow de jour.
Also Deb mentioned only drinking 8 ozs of water with each can of VHC. That only works if you drink 6 cans which is a stretch. You need to drink 48ozs of water which is 6 eight oz glasses.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | For sure I drink way more than 48 ozs of water daily. I always did. More like 6 1 PT 9 oz bottles of spring water
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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | You are right David....48 oz is the magic number and I forgot you were figuring only 4 cans a day...we had to do six. I always snuck in more water during the PEG flush before and after so always exceeded the required amount.
Bottom line is to document what you eat and drink because those dark days just run into one another and you can't make up the missed calories and fluids. You need to see that at 12 noon, you have reached at least 1/3 of your requirements cause the day will fly and you are behind. It was so hard to get Bill's feedings done in between two rad treatments a day especially when the first can in the morning made him weak, faint, and sweaty, making the drive miserable. He toughed thru it though and on chemo days, I would come and go with those cans and chicken soup. It ain't easy, even with a caregiver!
So, Jim, get out your pen and paper and track those calories and ounces!
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
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