| Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | My Friends and extended OCF Family: I hope I posted this under the most appropriate topic. I have kept very low key about this as I don't even have a total game plan together. I am going to be as brief as possible about this, at least for now. The past three weeks or so I have had upper arm pain in my left arm. Both I and my medical team had all drawn the conclusion that my radiation neuropathy was progressively getting worse. Last Thursday I was headed to my study group. Walked out to Jeep, opened the passenger side door, moved my journal to left hand to take work bag off my shoulder and BAM, instant tears as I felt my bicep stretch and felt a "Pop" in my upper arm. I said, all right, I get it! Went to ER and they were no help; booked an orthopedic surgeon for that afternoon and first thing was an x-ray which uncovered a very large tumor inside my humerus bone (About 2.5 x 1.5 inches in size)! It has literally created two hairline fractures in the bone!!!!! Having surgery tomorrow to place a rod in the bone and stabilize it, and complete biopsies while in there. No matter if it is malignant or benign it will have a couple weeks healing time and back to the radiation table! There is already some theories floating around about mets or radiation treatments possibly creating this. It did not show up on a full body PET CT actually completed exactly a year ago. More to come but grateful for Prayers that this thing is benign and I can get this behind me quickly and back on with life! I've beat the beast four times, so what's one more! Thanks all, will update everyone soon.
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: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Steve Im very sorry to read about your latest struggles!!! You have been thru so much already.
Please update us when you can. Best wishes with your surgery and recovery!!! 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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Hey Steve - boy, sometimes it seems you just can't catch a break. You've fought long and bravely and I know you're continuing to give it everything. I'm sending all the positive vibes I have in your direction. Keep us posted. Stay strong. We're all with you.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Wow, so sorry to hear about the new bout with the Beast. You are one of the true warriors around here so we're all rooting for your upcoming battle. Keep the fighting spirit up; it's always worked for you so surely will give strength this time around too. Best wishes, 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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Steve I'm very sorry to hear about this latest news. Sending best wishes for a smooth recovery.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Hi all, Just to update, had four pins placed in bone last Thursday. Tumor is malignant and is mets from neck and throat. Still having limited mobility in arm and the moment I get up and arm isn't elevated it begins swelling, badly! I had my radiation simulation and maintenance today, staples are yo be removed tomorrow and begin treatment next week (An additional week to hopefully eliminate some more swelling and to finalize the calculations and dose. Pain was reduced after pins put in, however tumor has really fired up past few days. Ready to get this on and torch this tumor!!!!! Thanks for the Prayers and encouragement.
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: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Thanks for the update! Im very sorry the tumor is malignant.
Not sure what you are taking for pain meds but its important your pain is kept under control. If you havent already tried gabapentin, AKA neurontin for nerve pain, its worth a shot. I used it and found it worked very well for my nerve pain. Ask your doc if it would benefit you and if so to write you a script.
Keep us posted. Wishing you all the best with everything! 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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Thank you Christine! I begin radiation tomorrow. Still have a terrible amount of swelling in arm, all the way down to my fingers. Surgeon said this would be the norm for quite some time. I learned when the staples were removed that those four pins in fact hold a rod that runs from my shoulder to my elbow! They did a new set of x-rays and I could see it. Janet, my wife, trying to make the best of it all said she could now call me "Blade" because the rod looks like a hacksaw blade in my arm and I used to collect knives. LOL I guess there was just a little confusion in recovery because we wee told a rod would be placed to begin with.The tumor and nerve pain is the roughest now, not the fracture. My Oncologist is on vacation this week but I will be asking his partner about neurontin and gabapentin. I have been taking Oxy and Percocet and adding Advil and Tylenol so as to not overload on advil too much. I do need something a little more thorough. Thank you all for the thoughts and Prayers! I hope all is well for everyone and you enjoyed your Independence Day!
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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