| | Joined: Mar 2008 Posts: 19 Member | OP  Member
Joined: Mar 2008 Posts: 19 | Great feedback from everyone - this forum really supplies a needed element for all of us. couple of comments - I use a special toothbrush I ordered - Oral B Advantage extra soft (bristles are quite soft, it still hurts getting access to back teeth); when I was about 6 mos. post rad. yes things burned more - I now use Biotene dry mouth mouthwash very diluted with water. My favorite drink is egg nog - it's soothing and smooth (and barely stings me) - suprisingly it's still available here post holidays.
Jim04 - oral/gingival SCC in 2004; surgeries, radiation, 2 recurrences
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | For the people that are having problems with their teeth rubbing against their cheeks or tongue and causing irritation, have you ever asked your dentists or doctors about having a teeth guard made that you could wear part of the time, like when sleeping, to reduce the friction. My husband has one, not certain why, which of course he never uses. It looks very similar to my flouride trays but not anywhere near as thick. I actually made a small one out of some gunk I found in the drugstore when I had radiation to cover one tooth that was cutting a hole in my tongue.
Just a suggestion. Maybe our resident dentists can weigh in on this thought.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 | Jim04,
Have you tried Carnation IB VHC? You might need an alternative when they realize Christmas is over.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I knew David would be pushing VHC LOL I have to agree with him tho, without the VHC, I would have lost much more than 50 lbs. Good job David
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yea, I live off my VHC commission. To this day I still have not been able to get anyone from Nestle to call or e me re doing something with the OCF.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2008 Posts: 19 Member | | OP Member
Joined: Mar 2008 Posts: 19 | David,
Is this the drink you mentioned?
Carnation VHC (Very High Calorie) Lactose Free Drink cs/24
NESTLE
Jim04 - oral/gingival SCC in 2004; surgeries, radiation, 2 recurrences
| | | | | 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,
That's it. I lived (virtually) off that stuff for over a year post Tx. I am so thankful that it is made as it really cut my feeding times down and when you don't feel like eating, that means a lot.
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: Mar 2008 Posts: 19 Member | | OP Member
Joined: Mar 2008 Posts: 19 | David,
I would be very interested to know more about your radiation treatment plan if you would (because I'm still trying to figure out why I have these mouth problems 18 mod after). For example, was your Rad. for the oral cavity, both sides, from where to where (mine both sides 66 gy bottom of my parotids to just above adam's apple) - does your mouth still burn when you eat, can you now eat normal food, trismus, really dry?
Jim04 - oral/gingival SCC in 2004; surgeries, radiation, 2 recurrences
| | | | | 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,
I had BOT and 2 confirmed nodes which Moffitt decided not to remove. My rad was concentrated (machine spent the most time) on the right and left side of my neck where the nodes are present and right under my chin. I believe it was in 5 locations to begin with (all under my chin line) and later sessions it was reduced to the 3 locations I mentioned above.
I guess I am one of the more fortunate ones as I really have no eating, drinking, mouth opening or swallowing issues and my dry mouth is nothing more than a reminder. I haven't seen any improvements since my 16th month post but I don't care at this point. Heck my torn rotator cuff from being hit by a car on my bike and the resulting surgery bothers me more than the remnants of my cancer treatment.
I didn't have the benefit of this site during my Tx and believe me I was the poster child for "don't do that" so I recovered despite myself.
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: Mar 2008 Posts: 19 Member | | OP Member
Joined: Mar 2008 Posts: 19 | Thanks David - that helps (but could you explain what is "BOT"?) - I guess because the rad focus for me was oral cavity - e.g. buccal/cheeks area which included tongue that differentiates me from your treatment.
P.S. anyone reading this who had similar treatment area as me - I would be very interested in your experience/details.
Jim04 - oral/gingival SCC in 2004; surgeries, radiation, 2 recurrences
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