Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
Joined: Oct 2006
Posts: 383
Platinum Member (300+ posts)
OP Offline
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)
Offline
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)
Offline
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!!!


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
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
Offline
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 Offline
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)
Offline
"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)
Offline
"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 - smile 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 Offline
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)
Offline
"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)
Offline
"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
Page 1 of 3 1 2 3

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5