| Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | So I saw my surgeon the last week of October and all is good! Mid-November and I start getting some wild headaches (I hardly ever get headaches). Thanksgiving week I feel a knot under my left jawbone. Now I'm concerned. Can't get into surgeon that week (They said mid-December(?), so I call Oncologist and get in day before Thanksgiving. We get a scan scheduled last Friday and yep, here we go again. Spent yesterday afternoon with surgeon and we scheduled surgery for next Wednesday. Tumor is Squamous-same type, different area and side of throat. Attached to a Lymph Node but he feels confident it's very isolated and will be an easy out with no sign of metastasis! Time to go, pain is becoming a grind at this point and now dropping weight even though I am eating. Will keep all updated. BTW, although I haven't commented here too often lately this group is always in my prayers. What a great Foundation and wonderful group of people here!
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Sorry to hear the news, Steve. Good luck with your surgery and I pray for wisdom and guidance for your medical team as well as the best possible outcome for you.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Steve, Im so sorry you are going thru a recurrence. Im hoping your surgery goes as planned and it can be a very simple procedure to get you back to being cancer free. Best wishes!!! ChristineSCC 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 | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Steve, So sorry to hear about another recurrence. On the plus side is you know the drill well. On the minus side is you know the drill well.
Let's hope you caught it early and a few snips can remove it and all will be well again.
Good luck.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thank You All. Will keep you posted as I progress through this latest journey! I feel very Blessed and confident this will be a quick turnaround!
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 | Hello, Steve.
I am so sorry to hear of this 4th round...so unfair! I am glad to know that you are maintaining a good attitude in the face of this latest news.
I will keep you in my thoughts and follow you through your treatment and recovery.
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: 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 | Paul has been where you are - he's very knowledgable - 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
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thanks all and here's an update. To your point Don it turned into a lot more than a few snips. To put it in the surgeons words, it was very aggressive, growing fast, and was really "Packed" in there. It had compromised the node (Encapsulated?), and spread around a few others as well as the jugular and several nerves, which as you all know will create more opportunities during recovery and therapy! I lost the jugular vein and several nerves, #9 which controls soft palate (Left side) so everything loves to come back up through my nasal passages. It wrapped around the nerves that provide feeling to ear, side of face, etc. (No big deal, just like ear/side of face & head are asleep all the time). I am grateful though as he feels strongly that everything is clear now. As a precaution and because of the aggressive spreading my tumor board has met and my oncologist determined that he would be willing to re-radiate, especially since this is on the other side (Left this time). And of course, the decision for six weeks of chemo to accompany the radiation! With all the swallowing issues due to nerve damage I get feeding tube early, tomorrow afternoon as a matter of fact! Will be soliciting help, encouragement, and Prayers as I go along (And hopefully I can help others along my path, it's not like I haven't already learned a few things over the past nine years, much from right here). Well, enough rambling. I'm braced, Faith is strong, attitude is right, time to get it on and stop Cancer in it's tracks once and for all. I have Grand-kids to take fishing this Spring! Love you all and thanks for listening and being there for me, and for one another.
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 | Hi, Steve. I'm so sorry of the findings once the surgeon got in there. It seems like the timing was essential. It's good to hear that he feels confident that he got everything, though I'm sorry that you had to lose the nerves controlling your soft palate.
All of that being said, I think the decision for another round of chemoradiation is a good idea to sweep up any stragglers that could cause trouble later. As you said, you know what to expect. I admire your strong faith. I wish I had that on which to lean, but I don't. Your resolve to beat this once and for all is empowering. May you be fishing with your grandkids come spring!
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: 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 | So glad your surgery went well - were I you I would push for rads. It is doable based on location. 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
| | | | 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: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 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 ****
| | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hi, Steve.
I hope you're hanging in there. You certainly have been through more than your fair share of this cancer stuff!
I just wanted to say that I also had carboplatin and taxol, with good results thus far. I didn't think the chemo was so hard to endure physically. I wasn't all that sick. The rads were a different story. I don't have any neuropathy, thankfully, but I have one hell of a case of chemobrain still. Sometimes my ears ring, but that can be due to stress.
I wish all the luck in the world! Keep fighting!
Love and hope 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: Nov 2014 Posts: 66 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 |
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
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