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"OCF Canuck"
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Hi there... can you eat orally? You could make smoothies. Mashed potatoes, soft scrambled eggs - with cheese... what are you allowed to eat and what are your limitations? Is it swallowing or maneuvering the food? so glad you got through surgery okay. wink

Last edited by Cheryld; 11-12-2013 11:13 AM.

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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Skilled nursing facility sorry about that. Yes it was horrible the first night ( I had only been there maybe hour) I overheard a staff member ask another staff member " man, what's wrong with her face". I was horrified. Not because my face was swollen and looked uneven but because I was expected to entrust my healthcare to these people. I did speak up and some changes were made but unfortunetly the tone had already been set. On a more positive note I'm happy tto be home,I'm happy to have my trachea out. Trying not to stress about radiation or my next surgery. Again thank you for having this forum. I can't find the words to express how grateful I am for this outlet.


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 Cheryl yes I can eat pureed foods only. Swallowing is ok but absolutely no chewing. During surgery they had to remove teeth and right now my jaw is very unstable. I have a g- tube which I use for my meds and for some feedings. I am trying to eat as much as possible orally with the expectation that once radiation begins that I will be using the g-tube as my primary means of getting nutrition. Thank you for the suggestions, believe it or not I hadn't thought of scrambled eggs. Thanks again. Sandy


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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It's hard to believe but I bet all of us have had to endure idiot comments from our health care practitioners at some point during our Tx. I know I had to and even ended up speaking to the President of Moffitt's hospital and she was the one that called me.


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.
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David,
Congrats on taking first place in your age group. An awesome accomplishment.


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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Meeting with the oncologist tomorrow. Radiation or post radiation scares me. I have read so much about the side effects I question whether I should have it. I was blessed with my pathology results. I realize I'm not the professional and ultimately it is my decision. So very confused. Not even sure what questions to ask.


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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Sandy - Regarding the Rad side effects - it does help to be prepared for eventualities, but remember that everyone is different and just because something is possible, it doesn't man it will happen. So when the "what-ifs" attack, try not to give them too much time before you switch to the more positive probabilities which is more productive and less stressful. I don't have your experience to be able to suggest what questions to ask, but whatever your doctor recommends, I would ask him/her "Why?" and ask for more details and also tell him how you are feeling in case he can help reassure you or has meds to help with the stress. If you go over info on the main pages of OCF or use the search boxes, it may give you some ideas about what questions to ask of your doctor, or for us here. About the staff member's unthinking comment, I would love to have asked her "What's wrong with your brain?" She must have been absent the day they discussed bedside manner. Hope everything goes well with your Oncologist meeting.


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.)



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Sandy,

Please do what your docs advise. Get a second or third opinion from a CCC if you want but don't take shortcuts with this cancer. As Anne Marie says everyone can be different and some breeze through radiation. Most of us do have a rough time but it's usually only 6 to 7 weeks and believe me that's nothing in the grand scheme of life experiences. I had a rough time but I didn't have the sage advice of this site until 3 weeks post Tx and trust me this site's advice can make a world of difference in one's treatment if you keep us informed and listen to our recommendations.

Let us know what they say.


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.
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I fear chemo more than radiation, still do. Radiation was doable, did it several times, but still difficult, but no where near what chemo did or can do acutely, even long term. Chemo put me in the hospital, acute care facility for 6 months, and have plenty of stories from them both. Usually the optimal wait from surgery to radiation is 4-6 weeks, but could be longer based on your healing.

Good luck with everything.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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"OCF Canuck"
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It really is an individual experience. Everyone's overall health, genetic make up, stamina etc... comes into play. Personally I wanted to know everything up front, planned for the worst hoped for the best - chemo was nothing for me - a little nausea, rads was HIGHLY UNPLEASANT, but doable. Some would say complete hell.. it really depends on you.
Definitely do what your drs suggest. They have the knowledge and experience. Educate yourself on what is normal treatment for your stage and type of cancer and if what they suggest doesn't match this ask why? As someone said.. short cuts aren't something you want to take a chance on with cancer.

hugs and 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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