| | Joined: Dec 2014 Posts: 7 Member | OP  Member
Joined: Dec 2014 Posts: 7 | Hello, I am new to this forum and happy to find it. Just a short history- I am married for 33 years and my husband was diagnosed in September with SCC in his right cervical lymph node. He had a tonsillectomy and multiple oral/tongue biopsies in October, hoping to find the primary site. All results were negative (disappointing, to say the least). Erbitux and radiation were started in November. I am happy to find this forum as questions have come up along the way and some answers are not easy to find. There is no support group in our area. I am an RN, but cancer is not my area of expertise. I look forward to the communication with others who have been through this and hopefully I can provide some insight to others as well. Thank you for the opportunity.
Wife to Jim with cervical node T0N1M0 dx 9/2014
Tonsillectomy with multiple bxs (all neg) 10/2014
Erbitux and IMRT started 11/2014
PEG placed 11/2014
Final rad and Erbitux 1/2015
PEG removed 1/2015
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Hi Deb - welcome to the family. There are lots and lots of people here who have been through what your husband - and you - are going through and we're all eager to help. Please ask any and all questions no matter how insignificant they may seem. Someone will have good advice.
I too had an unknown primary and came through treatment very well with no recurrence. I'll keep the good thoughts flowing your way!
PS dunno where you are in our state but if you're in or near LA I'm happy to help in any way I can.
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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Deb my husband also had the Erbitux and radiation, and is doing fine now. They are probably having to do a larger target volume because they couldn't ID the primary ... but it's also possible that he fought off the primary on his own. Will the therapy be done by the end of the year? Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | 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 | Welcome to OCF! You have found the very best and biggest online support group for OC patients and caregivers. Stick with us and we will help you both get thru everything you both are facing.
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 | Welcome to OCF. Good to hear it was diagnosed early and under treatment. Not knowing primary just means they have to be more conservative with the treatment plan but chemo and rads have very good track records for knocking it out. 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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Hi dednpd,
Ditto to what david2 offered. I too live in Los Angeles, and if there is anything I can do, just let me know. It doesn't get better than this forum, you are in good hands for sure.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Dec 2014 Posts: 7 Member | | OP Member
Joined: Dec 2014 Posts: 7 | Hi Maria, Thank you for your response and positive news. Therapy will be finished on Jan 9th so still a few tough weeks ahead.
Wife to Jim with cervical node T0N1M0 dx 9/2014
Tonsillectomy with multiple bxs (all neg) 10/2014
Erbitux and IMRT started 11/2014
PEG placed 11/2014
Final rad and Erbitux 1/2015
PEG removed 1/2015
| | | | | Joined: Dec 2014 Posts: 7 Member | | OP Member
Joined: Dec 2014 Posts: 7 | Thank you all for the positive thoughts and support. So appreciated.
Wife to Jim with cervical node T0N1M0 dx 9/2014
Tonsillectomy with multiple bxs (all neg) 10/2014
Erbitux and IMRT started 11/2014
PEG placed 11/2014
Final rad and Erbitux 1/2015
PEG removed 1/2015
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Deb - the next few weeks will be challenging for you both, but he is most of the way through therapy - so that's all to the good. Remember to care for yourself as well, and don't be shy about asking for help. I see your husband is on a PEG tube, so that will make the nutrition and hydration easier - but he should try to keep swallowing daily.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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