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missyp Offline OP
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Just found out today that my husband has 4 more tumors only 4 months after mandibulectomy surgery and he has recovered so well. Surgeon is referring us to oncologist. He's had radiation at 4 rounds of chemo, 3 were induction chemo and he's highly allergic to Erbitux. Not sure what to think next...any advice is appreciated...does he continue treatment or try to check items off of the bucket list. I'm concerned for his quality of life after what he's been through


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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I'm really sorry to hear the news. Don't get too far ahead of the process. See what the oncologist has to say.


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
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Posts: 1,024
"OCF Kiwi Down Under"
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I am sad to hear your news. Of course we all think of the worst when given this news. I agree with Uptown. See the Oncologist and listen to what he has to say. Get a second opinion. Preferably from a Comprehensive Cancer Centre. Above all, have hope.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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missyp Offline OP
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thank you for the advice...I need to remember the mantra...one day at a time. Just very disappointing news after what he went through with the big surgery.


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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Im so sorry! Try not to get too far ahead of yourself. I know its so hard not to worry but it will only add unneeded stress making everything harder.

Ive been thru recurrences myself. Its NOT easy!!! I suggest a comprehensive cancer center (CCC) if for nothing else a second opinion. There could be other options like brachytherapy. Smaller facilities will not usually have as many options. If he is already at a CCC, still seek out another one for an opinion.

Best wishes!!!


Christine
SCC 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 smile
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"OCF Canuck"
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Why do they keep doing chemo? Chemo does not kill this cancer. He needs a chemo radiation combo, or straight up radiation. He should have had it after the surgery particularly because this is his third dance with this cancer, it's already proven itself to have staying power. This can be an invasive and aggressive cancer as you've seen. Is he being treated at a CCC? Normally they may try the surgical route once, twice, even a third time, but after a 2nd recurrence, he should have been slotted for rads immediately after his surgical healing period was over (to be honest I would say - after it showed up in his tongue it should have been radiated post surgery). They are taking chunks out of him and giving him chemicals that have minimal effect but also compromise him with a lowered chance of a cure. Ultimately - they are chasing it rather than being proactive. Chemo may shrink the tumor, or soften it up, so that rads can come in and kill it - I has never cured this type of cancer that I know of. Do talk to your onc. If they want to operate fine, but I would absolutely push for radiation post haste. Hugs - sorry. I'm assuming no rads as you have none stated in your footer.


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
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I am sorry to hear the bad news. It really does help to take it one step at a time. See what the oncologist has to say; there may be other treatments available. Don't forget to take good care of yourself, too.


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.
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missyp Offline OP
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thank you for the advice about radiation. He did have radiation on his soft palate three years ago...where the first cancer appeared. Then it was on his tongue and they don't radiate the tongue. Now that he has had the mandibulectomy, he actually has new tissue on his neck (from leg and chest) so radiation may be an option. Thursday is our Dr. appt so I will ask all of these good questions. He's had 4 rounds of chemo previously so I'm not sure if it would even work. One round of cisplatin, while undergoing radiation and three separate rounds of induction chemo after that.


Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
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What do you mean "they don't radiate the tongue"?


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.
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Dont forget to ask about surgical options too. Chemo is a tool that helps make radiation more effective. Alone it is not a cure but will be used for palliative measures to extend a patients lifespan.

Please do not rule out getting a second opinion or going to a CCC. Recurrences arent as easy to fix as the first round of cancer.

Good luck with everything!!!


Christine
SCC 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 smile
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