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Sandy, the is The Oral Cancer Foundation. It is not only for SCC type oral cancer but that is the most common one we see. Its for all oral cancer patients and caregivers. You could find other sites helpful or you may not. You are always welcome here and we will always try to help as much as we can.



Christine
SCC 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 smile
Joined: Oct 2013
Posts: 58
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Tomorrow is my day for a 2nd opinion on chemo. Tomorrow is my day for dental clearance so the radiation can begin..should I be concerned that 2 1/2 months have passed between surgery and radiation?


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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"OCF Canuck"
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yes - sorry but it's the truth. Surgery is meant to remove the tissue. Even if there are clear margins there is always the potential for something to be left there. This why they generally give 6 weeks for healing - unless you have complications - then they like to keep it in that time frame.

I am surprised you've waited that long. It is a complicated surgery no doubt but most of the major healing takes place in the first 6 weeks. They know how long it takes for bones/tissue/muscle to heal.

Anything beyond that time there is the potential that anything left there can grow back, expand, and move. (this often depends on the type of cancer and aggressiveness of it) I am not overly familiar with sarcomas. But my question to the drs. while I was battling my tongue tumor was - how soon can you do it?

Why so long a wait?

best of luck.



Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Still no clearance back to the dentist in 1 weekfor treatment. Hurry up and wait. Finding out patience is Not part of me. Getting frustrated fast. Back to the oncologist in a week. He wants to talk to the ENT. Something tells me this conversation should have already taken place. Aghhhhhhh.


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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"OCF Canuck"
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Yes hon you need to push - start phoning - get your face in front of theirs - not rudely - explain - you're scared you don't want this to come back you've been waiting and you're very anxious. Sadly where medicine is concerned it's the squeaky wheel that gets noticed otherwise you just blend into the group.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Posts: 58
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Radiation has finally started I'm 11 treaments in and have noticed a tightness in my neck and face, I'm assuming this is normal. Throat is sore, face is red and feels hot. Stopped having fun 3 months ago when this all started....trying really hard to stay positive


8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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Hi Sandy,

You are doing great, hang in there. You been here long enough to get read up so you know what to expect. Just drink and eat as much as you can for as long as you can. Most start having real issues by week three. good luck, don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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Administrator, Director of Patient Support Services
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Sandy, now is when the side effects usually begin to appear. They will progressively get worse as time goes on, even continuing the first few weeks after finishing treatment.

What you can do is to focus on your intake. That is what will make this easier. Every single day you need a minimum of 2500-3000 calories and 48-80 oz of water. Every single day! No skimping!!!! That quickly becomes a bad habit and before you know it you will become malnourished and dehydrated. You do NOT want to end up hospitalized for that. I went thru it a couple times and it was horrible!!! So please push yourself to always take in enough every single day.

Rinse your mouth at least 4 times a day with a mixture of 16oz of warm water with 2 tsp baking soda and 2 tsp salt. the salt will probably burn but try to keep it in there by cutting back to 1 tsp or even 1/2 a tsp. Salt water helps with healing those mouth sores. The baking soda helps neutralize your ph balance in your mouth.

Hang in there, we are here to lean on if you need us.


Christine
SCC 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 smile
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Hi there... tightness is normal!!! redness - you need a good cream for after daily rads. Just don't apply it prior to. It's a one foot in front of the other prospect. You will get there. hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Ask your doc for prescription cream like beta-val for your neck. Pat it on several times per day but never within 3 hours prior to rads. It can cause issues with your treatment.

Hang in there!


Christine
SCC 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 smile
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