| Joined: Dec 2014 Posts: 12 Member | Member Joined: Dec 2014 Posts: 12 | Thank you. I will keep an eye on it. I had my appointment with the ent dept today. Finally I have some sort of answer. They have now referred me back to the orphoepaedic surgeon who did my spinal fusion. They now believe that I may have an allergy to titanium I had the fusion eighteen months ago. Apparently not only can it cause the symptoms in my throat. It can also cause lesions on the tongue. I have titanium plates and screws in my. So probably yet another round of tests to come. And maybe they will have to remove the metal hardware in my neck. X | | | | Joined: Aug 2014 Posts: 64 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2014 Posts: 64 | Wow steve the bravery you show is amazing I will keep you in my prayers your going to be okay people strong like you never go down because they never give up
Teen with questions and willing to help and give support any way I can
| | | | Joined: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 | Sorry to hear of your recurrence, as others have said you appear to have the right attitude.
As Bob Marley Said �You never know how strong you are, until being strong is your only choice.�
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thank you all so much. I sincerely appreciate the encouragement. Tube is in and I'm getting good calories and nutritional intake now. Energy not quite where I would like it, yet! Mask and simulation next week. I am awaiting a call about Hematologist (May be shared on Wednesday during my radiation visit (They all work closely together on tumor boards so probably already on board with TX plan). Had a great and positive visit with speech/swallow therapists this past week and spent afternoon with one of my Granddaughters yesterday. She insisted we "Read Books together," which I got to do a lot of the reading and those books for 4-6 year old's can be challenging for folks like us, but a child holds no prejudices, just unconditional love. Wondering if speech therapist put my Daughter up to that - LOL! Seriously, although I fell asleep on her once it just made my day having her with me. She even helped feed me - Fearless! Great Bob Marley quote, Brian! I'm ready, let's get with it! Thanks all for the support.
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Steve, I'm so glad you enjoyed the unconditional love and reading with your granddaughter. The rest sounds good, too!
Love in OCF, Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11) SCC L oral tongue (no risk factors) L partial gloss/MND 3/28/11 @ 25 wks preg T1-2N0M0; no rads/chemo Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-) Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx. Various scans since rx ended are NED! Part of genetic study for rare cancers @ MGH. 44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Good luck and keep up the good fight in this WAR!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thanks All. So I start seven rounds of Erbitux beginning next Wednesday and thirty Rounds (Six Weeks) of Targeted Radiation to begin the following Monday. I was told we were going with Erbitux since I already have the nerve damage and hearing loss from Cisplatin. I told the Hematologist it really didn't matter in my opinion if I have already suffered the side effects, whichever would give me the largest leverage of beating this for good! She stated that I would respond well to the Erbitux and if there happened to be any issues with it we would then reconsider an alternative, possibly the Cisplatin. I'm now trying to regain some nutrition and possibly some weight so I'm ready to get in the Ring and finish this! BRING IT!!!!!
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Sounds like the boxing gloves are on and laced for the fight. Beat the hell out of it Steve. Also, mention carbloplatin as an alternative; it is a platin and supposed to be just as effective as cisplatin with less side effects.
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 | | | | Joined: Jan 2015 Posts: 10 Member | Member Joined: Jan 2015 Posts: 10 | Hi Steve, I am praying for you and hoping for a speedy recovery for you!!
Father had oral cancer stage 4A. Diagnosed 17th May. Partial glossectomy and graphing done from hand. Radiation 30x. Chemo - cisplatin 6 rounds. Finished chemo and radiation in Aug. PET - Nov - recurrence and spread to liver and lungs Chemo started - erbitrux and 5fu. 2 rounds done. Passed away 12/23/2014 - i believe he is in a much better place now | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thanks All for the support. Don, I appreciate the advice and will keep it in hand. I had already received my first treatment prior to reading your post (I had a violent, chill-like shakes reaction, nurse stopped treatment, gave me a benadryl and a steroid injection, and when I got calmed down resumed the treatment). Not sure what the Doctor will make of that but I meet with her prior to my next treatment. I must say I haven't had the nausea the Cisplatin caused me. If she mentions a switch I will definitely mention your carboplatin suggestion and see what she says. Start Radiation tomorrow so time to "Lock & Load!"
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
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