| Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | Well, you guys may remember my post from Novenber or so. Had a petscan that showed lymph node reaction,but no tumor. Docs thought it may have been from strep throat. after a routine angiogram in december turned into a life threatening event, I did a follow up petscan in January that showed no improvement in node reaction, actually slightly worse. a biopsy on my subclavicular node was malignanat. there were a couple of tiny nodes in my chest that showed reaction and next step is a chest ct scan to see what the treatments will be. as of now the possibilty exists of chemo and possible radiation of my chest, then surgery. dont really know which way we will go. Guess we shall see. guess the good part is that I feel good and would never know it if wasnt for scan.
discovered a golf ball in my neck St.Paddy's day 2010. Dx stage 4a left tonsil ca may 2010 at 50 non smoker, moderate beer drinker HPV-16 pos. tosillectomy 9 weeks Cisplatin 35 rads nov.2010 PET NED 2011 2x PET NED 2012 2x PET Ned 3/13 Pet NED SEptember 2013 Pet uh-OH.questionable and anxious follow up pet, yup, its back. mets to sub clavivular and mediasteinum nodes biopsy positive scc. trying to figure out next step my imaginary friends think I am crazy.
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Tom,
So sorry to hear about the recurrence and the possibility of it being distant. Sounds like it is early days so more options for you.
Your case is a perfect example why scans are worthwhile post tx. The typical scopes are not going to pick up distant activity.
Please keep posting your update often. I am certain many here are concerned for you and want to offer encouragement as you proceed through some uncertain terrain.
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: 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 | Tom,
I'm deeply saddened by your news. Like Don says, it's good your PET scan showed up. I really hate that insurance companies are not allowing these in so many cases lately.
Keep your chin up, sir. Please keep us apprised of your situation and know we are all in your corner.
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: 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 | This sucks!!!L 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: 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 | Tom, Im very sorry you have joined the recurrence club! A second opinion might be a good idea.
Please let us know whats going on.
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: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | thanks all. this is basically the secod opinion. my local ENT referred me to a CCC in San Diego. was presented to tumor board on thursday night to inform me of the need for CT scan. Either way,fights back on.
discovered a golf ball in my neck St.Paddy's day 2010. Dx stage 4a left tonsil ca may 2010 at 50 non smoker, moderate beer drinker HPV-16 pos. tosillectomy 9 weeks Cisplatin 35 rads nov.2010 PET NED 2011 2x PET NED 2012 2x PET Ned 3/13 Pet NED SEptember 2013 Pet uh-OH.questionable and anxious follow up pet, yup, its back. mets to sub clavivular and mediasteinum nodes biopsy positive scc. trying to figure out next step my imaginary friends think I am crazy.
| | | | 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 | Hi Tom, your case is quite similar to my husband's -- no symptoms were showing and we would not have known about the mets if it were not for a chest x ray his GP ordered. It has been nine months and John is still not showing symptoms but he is now in a clinical trial.
Sorry to know that you have to join the group and I wish you the very best moving forward.
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: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | thanks gloria, I guess these lymph nodes are still normal sized.just higher suv(7). I had 3 chest xrays and a ultrasound in the last couple of months due to cardiac issues and nothing showed as unusual. Just a pet, now having a CT this week. I wish John the very best and of course you also.
discovered a golf ball in my neck St.Paddy's day 2010. Dx stage 4a left tonsil ca may 2010 at 50 non smoker, moderate beer drinker HPV-16 pos. tosillectomy 9 weeks Cisplatin 35 rads nov.2010 PET NED 2011 2x PET NED 2012 2x PET Ned 3/13 Pet NED SEptember 2013 Pet uh-OH.questionable and anxious follow up pet, yup, its back. mets to sub clavivular and mediasteinum nodes biopsy positive scc. trying to figure out next step my imaginary friends think I am crazy.
| | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Tom-Your case sounds like my husband's a bit too (though he went right from primary treatment to lung mets). It has been 10 months since his mets were first found in hilar nodes of lungs. The mets were treated with radiation. Though additional mets have popped up, he still is symptom-free after 10 months, so that is heartening.
It has been good to be in touch with others going through this same thing. Feel free to PM me if you would like me to share our experience at our CCC (Johns Hopkins) and their approach to treatment.
Best, Mary
Mary Caregiver to husband, 60 Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+ Oct '12 Sub.Gland transfer Nov-Dec '12 IMRT x 33 + cisplatin x7 March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED) April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16 9/13: 33 rounds IMRT to lungs; carboplatinx7 CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC 30 rounds IMRT to left lung; treatment ended 5/29/14 Sept 2014--CT clear; December 2014 CT clear
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | Hello folks, got my CT scans results back today. Had a scan of the chest, abdomen and pelvis. Doc told me over the phone that the concern is a spot in the mediasteinum. Tumor board recomennds chemo and possible radiation at this point. gonna meet the CCC's medical oncologist to discuss plan. At least there is a plan.( just want a fighting chance.) The ENT oncologist explained that there is also some brand new stuff they want to talk to me about. I guess this is mediocre news since I knew from the petscan that there was uptake in the nodes. obviously wanted to stay away from mets to lungs, liver, etc. so thats a partial relief. dont wanna get to high or to low. Just wanted to let you guys know where I am at.
discovered a golf ball in my neck St.Paddy's day 2010. Dx stage 4a left tonsil ca may 2010 at 50 non smoker, moderate beer drinker HPV-16 pos. tosillectomy 9 weeks Cisplatin 35 rads nov.2010 PET NED 2011 2x PET NED 2012 2x PET Ned 3/13 Pet NED SEptember 2013 Pet uh-OH.questionable and anxious follow up pet, yup, its back. mets to sub clavivular and mediasteinum nodes biopsy positive scc. trying to figure out next step my imaginary friends think I am crazy.
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