| | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) |  "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Good luck with the surgery and REALLY enjoy the holiday foods.. you will get through rads. 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: Oct 2013 Posts: 58 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2013 Posts: 58 | Successful surgery....yeah! Unfortunately my jaw is officially wired shut. Liquid diet...boooo! Trying to squash the fear my RO noticed some swollen lymph nodes on my left side. I wish she hadn't. Anyway ready to take this radiation and fight.. so very tired of being sick and tired.
Thank you for all the well wishes.
Ps any suggestions on which liquid nutrition has the best results.
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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Good luck my dear and hopefully you will heal up quick. You have been through alot hopefully the nodes are NOT cancer related but just swollen and badly behaved nodes that are inflamed and angry. hugs
Last edited by Cheryld; 12-18-2013 08:01 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
| | | | | Joined: Oct 2013 Posts: 58 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2013 Posts: 58 | Thanks so much for the well wishes cheryl. Happy holidays to you and your family
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
| | | | | Joined: Oct 2013 Posts: 58 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2013 Posts: 58 | Freaking myself out. I recently found out the stage (2a, apparently very aggressive). Every article that I have read suggests chemo and radiation therapy. None of my doctors have suggested chemo, I start radiation as soon as the dentist clears me. I'm not wishing for chemo, but I certainly don't wish for my sarcoma to make a repeat performance. Not sure how to ask the doctors without " insulting" them. Trying to stay positive. Happy New Year to Everyone! 
Last edited by sandy1923; 12-31-2013 02:03 AM.
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
| | | | | 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 | Not sure where you are getting the Tx but you can always get another opinion from a CCC.
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: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,292 Likes: 1 | Sandy,
You will not be insulting your doctor by asking a question that is based on research you have done. In fact, most doctors appreciate a patient who is informed and engaged.
Just state your research and reading states most all rads are done concurrent with some form of chemo, preferably a platin like cisplatin or carboplatin. It seems your treatment plan does not include a platin and wonder what the rationale is in your case. I am certain he/they will gladly offer their reasoning.
Best to you with your upcoming treatments.
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 | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Although sarcoma can have some common areas with SCC in the head and neck, sarcoma is a different cancer, and may be treated differently than most cancers here, but I'm no expert. Surgery is the mainstay from what I understand, but some sub-types respond to radiation, chemo, and see targeted therapies being used. As suggested, ask your doctor any questions, get a 2nd opinion if you want, check out the top CCC, like MSKCC, and see what they're doing for different sarcoma's, join a sarcoma support/blog group also.
Good luck.
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 2013 Posts: 58 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Oct 2013 Posts: 58 | Oh I'm so sorry about being on the wrong site. With all my research I found I could relate best with the treatments and surgeries that were discussed in the different forums on the OCF . Wen I read about treatments for soft tissue cancer of the mandible they suggested the chemo I figured I should get a second opinion . Again I apologize, I never intended to overstep any lines. I will look up sarcoma sites. Happy New Year and best wishes.
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
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | You're not on the wrong site or saying to leave. I'm just offering suggestions that may or may not be beneficial. I briefly looked into osteosarcoma, for a blogger friend in Austrailia looking for help, and found some support groups, books, info, treatments, relative to his disease. Some things seem the same between the two like some chemo's used, not all. if radiated by IMRT in the head and neck, Brachtherpy, IORT, surgery, side effects, stress of course, but some other treatments were not the same, but my friends went to the lung, and I wasn't sure on your type of your sarcoma, not that it matters to me cause I know nothing to really help, and joining another site, in addition to here, researching, may help you. I belong to three different suport groups myself. Your input may help others here. One side effect from radiation treatment, which most had here, I believe, unfortionatly, can be sarcoma in soft tissue in the radiated area years, decades later. If I come across any info, I can link here. Happy New Year. Here is a link to the NCCN Guidlines for Soft Tissue Sarcoma for professionals, which most CCC may follow, and will take you step by step in the type of tretmnts based on sub type, area, stage, etc. You may have to register to view or may be able to google a copy available on-line: http://www.nccn.org/professionals/physician_gls/pdf/sarcoma.pdf Sarcoma Alliance Italian Sarcoma Group Peter Mac Sarcoma Service: http://www.petermac.org/VictorinBoneSoftTissueServiceAustralian Sarcoma Study Group: http//www.australiansarcomagroup.org/ Books: "Diagnosis and Management of Soft Tissue Sarcoma" by Murray F Brennan and Jonathan J. Lewis, who are from MSKCC. I have this on e-book. "Pediatric and Adolescent Osteosarcoma" Published by Springer. They may have treatment ideas, information, resources, and I this on e-book too.
Last edited by PaulB; 01-01-2014 10:05 AM. Reason: Links
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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