| Joined: Apr 2017 Posts: 81 Likes: 2 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2017 Posts: 81 Likes: 2 | Hello all, I had Trans Oral Robotic Surgery (TORS) at Stanford University yesterday with Dr. Holsinger. The goal of the surgery was to identify the primary in order to determine the appropriate IMRT protocol. They removed the lingual tonsil, my residual tonsils/adenoidal tissue (had them removed when I was 3) and then all the tissue on the left BOT down to the muscle (this is mostly epithelial and lymph tissue.) I spent the night at the hospital and release this morning. Recovery time is 2 weeks (3 weeks for strenuous exercise.) Pathology should take 7 to 10 days. Not too much bleeding but it's very difficult to swallow and the pain is pretty high. The doctor said the second day would be the worst day and to stay in front of the pain with 5mg of oxycodone every 6 hours. I'm going to try to alternate that with tylenol as the swelling bothers me more. Yesterday, about 6 hours after surgery, I ate a bowl of blended chicken soup, some jello, and a popsicle. They want me to try soft solid foods tonight. One interesting anecdotal observation by my surgeon. He noticed I had a great deal of "super reactive lymph-type tissue" at the BOT and he has seen that repeatedly with HPV+ oral cancers. He suspects that may be one reason we don't resolve virus like other people do. Again, that's not peer-reviewed, just his observation. I am in two clinical trials - one for biomarkers for oral cancer (Dr. Le, Stanford) and one on the use of TORS and quality of life for oral cancer (Dr. Holsinger.) Hope my data can help others! Thank you all for your support. I'm going to experiment with scrambled eggs and grits for my soft food. Had a protein shake when I came home; it took a long time to drink it. Stef
Keep fighting friends!
Me -- currently 53 years old SCC diagnosed 3/7/2017 at age 48 Staging SCC HPV+ T0,N1 primary unknown PET 3/16, no activity, biopsies 3/23 benign TORS surgery identified 2mm tumor in BOT (vallecula) Cancer restaged T1, N2, M0 Begin 30 sessions of radiation (60 Gy) 6/13 Completed radiation 7/24/2017 1st MRI clear 10/23/2017!! 2nd MRI clear 10/17/2018! | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Stef,
I'm so glad your surgery went well, and are in good hands at Stanford!
It would be interesting to see what biomarkers they will be testing for as there are different ones I'm reading about.
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
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Stef,
Thank you for taking part in the trials. Every little piece of information may turn out to be vital. Like my husband's MO used to say, it will benefit mankind.
If you need to boost your intake while you are having some difficulty with swallowing, you can try making fortified milk and use it with whatever you are putting the milk into. It's basically just adding powdered skim milk to the regular milk you are using. It will add to the calorie count.
All the best ahead.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Apr 2017 Posts: 81 Likes: 2 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2017 Posts: 81 Likes: 2 | Thank you all.
I was able to have a scrambled egg today and 1/4 of an avocado.
I also had a smoothie for breakfast with whey and mango - that's the only fruit I can currently tolerate.
Tonight I hope to have some cottage cheese. Thank you all for the support. Having read your experiences with swallowing and nutrition have kept me from panicking.
Keep fighting friends!
Me -- currently 53 years old SCC diagnosed 3/7/2017 at age 48 Staging SCC HPV+ T0,N1 primary unknown PET 3/16, no activity, biopsies 3/23 benign TORS surgery identified 2mm tumor in BOT (vallecula) Cancer restaged T1, N2, M0 Begin 30 sessions of radiation (60 Gy) 6/13 Completed radiation 7/24/2017 1st MRI clear 10/23/2017!! 2nd MRI clear 10/17/2018! | | |
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