| | Joined: Apr 2009 Posts: 9 Member |  Member
Joined: Apr 2009 Posts: 9 | Hi Chris -
I'm really sorry that your dad has to go through this. This is a wonderful forum....everyone here will answer any question you may have, and they helped me tremendously when my husband was ill.
My husband had a PEG tube inserted prior to beginning treatment, and it was a godsend while he was going through his treatments. For a while, he was eating somewhat normally, but would supplement with a liquid nutrition called Jevity, prescribed by his oncologist. It provided him with fluids, fiber, calories, fats, and vitamins & minerals, and comes in different calorie levels. After beginnning radiation, he eventually had a terrible time eating, drinking, or swallowing pills, so the Jevity became more important. When he could no longer swallow medications, most could be crushed and flushed down the tube with water. It was very easy to keep him hydrated also, which is very important when going through chemotherapy or taking large amounts of painkillers.
All the best to you and your dad!
Judy
Wife of Russ, 51, who was diagnosed with Stage IV 4cm tumor in mouth floor, jawbone, and tongue in June, 2008. Had aggressive chemo & radiation. Tried & failed to have a resection in March, 2009. Was in hospice care from March 13 until he left this earth on April 10, 2009.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | EZJim, Medicare/Insurance wouldn't pay for VHC for me either (It's considered a 'drinkable', not a PEG food, but they did pay for Nutren 2.0 (Same company, 500 cal/can, put NesQuick in it to make it drinkable and that adds 60 cal/can!).
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 | Was your dad a tobacco user?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2009 Posts: 75 | Hi:
No. He never smoked and was not a drinker.
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You might want to research HPV and inquire about being tested for it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Apr 2009 Posts: 75 | Hi:
Do you mean me get tested? Why? What is the connection?
Thanks
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | THanks for the post Pete.I'll check into that.
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 | No Boston I meant you might want to read up on HPV and then after reading you may want to talk to your dad about the test.
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 2009 Posts: 4 Member | | Member
Joined: May 2009 Posts: 4 | I had what your Dad has. What everyone is saying is correct. One of my biggest problems was and still is that I cant use regular toothpaste. The mint hurts my mouth. I use Oral B Stages toothpaste. It is bubble gum flavored and doesnt cause any pain in the mouth. I think it is for 2 year olds. Good luck with your Father. | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | One of my biggest problems is I have no teeth LOL and it still burns like heck.gums. tongue and everythig involved, Right Christine?
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
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