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#188711 03-15-2015 05:34 PM
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Chuck59 Offline OP
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Hello to all. I guess this isn't the place that we want to be, but who does. I'm from Reidsville, NC and a patient at Wesley Long Cancer Center in Greensboro, NC. I have been diagnosed with tongue base stage III squamous cell carcinoma. I will be having a G tube and port put in this week and will start my rad and chemo the following week. My team at the cancer center has answered a lot of my questions and recommended this site to get a better understanding of what is and will be occurring during and after my treatments. I'm hoping I can get some good data, as I'm sure I will, from all of you who are going through or have been through this cancer. Hope that all of you are doing well, or as well as can be expected throughout your journey with this dreaded disease.

Chuck59 #188713 03-15-2015 09:15 PM
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Welcome to OCF, Chuck! Im happy you were referred to our site. We are in your corner ready to help you with info and moral support to get you thru the next few months.



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
Chuck59 #188714 03-16-2015 10:52 AM
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Howdy, Chuck, and welcome. Sorry you have to be here, but here is a great place for information and support. Fire away with your questions, we're you're new family.


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
Chuck59 #188717 03-16-2015 01:45 PM
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Hi Chuck, Getting a port is a good idea. What is a G-tube? Do you have any questions for us?


HPV+ P16 positive squamous cell carcinoma

Oct 2014 found neck node lumps
Went to Oncologist (TNBC)
Ultrasound
2 CT Scans - body/head and neck
Needle & core biopsy
Pet Scan
Biopsy to find primary w/ anesthesia - failed
Second Opinion found primary & biopsied
Biopsy confirmed HPV+ P16 Squamous cell carcinoma
Radical Neck Dissection 11/22/2014
32 lymph nodes removed - 3 positive
Ported 12/29/14
Chemo and rads to start January 5, 2015
cisplatin weekly 40 mg/m2
Rads M-F for 7 weeks
Chuck59 #188724 03-16-2015 06:13 PM
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Hi QueenKong, actually PEG is the correct terminology. It is a feeding tube inserted into my stomach. At some point, the doctors feel pretty sure that I won't be able to swallow food very well, if at all.
Chuck59

Chuck59 #188732 03-17-2015 01:02 AM
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Hello Chuck. I'm in the pro PEG group , many are not. At some point during radiation you will have great difficulty swallowing and the PEG will save your life. However you must continue to swallow, whatever you can. Custard, eggs, Ensure etc. If the swallowing muscles are not used , we very very quickly forget how to use them. Many here have swallowing issues post treatment.
Hoping you sail through treatments,
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!
Chuck59 #188734 03-17-2015 06:57 AM
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In Canada, everyone calls it a G tube, but it seems PEG is the commonly used term in the U.S. If you find yourself not able to swallow even Ensure or eggs during treatment, you MUST still diligently do your swallowing exercises, even dry swallows. It is vital to the recovery of one's ability to swallow post treatment.


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.
Chuck59 #188749 03-18-2015 09:34 AM
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The PEG is a G tube that is inserted using an endoscope down the throat. PEG stands for Percutaneous Endoscopic Gastronomy, with the PE being the placement method. Some Gastronomy tubes are placed using interventional radiology. For example, after my husband's mandibalectomy, the flap was too fragile for using an endoscope.

It's very important that the body get the nutrients needed to heal, but swallow as much as possible even through the pain.

Susan

Chuck59 #188899 03-27-2015 03:08 AM
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Hi Chuck,
Welcome! You found a great source of assistance with many very caring people! I am also a PEG tube supporter and I agree that a PORT is the right way to go. DO NOT be bashful about using that tube, it's there for a reason and nutrition is critical to successful treatment and recovery. Best wishes for successful treatment and everyone here is very helpful and always here 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 ****

Chuck59 #188900 03-27-2015 08:19 AM
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Welcome Chuck. My doctors were in the anti-PEG camp, at least for me. But like most things the decision should be a medical one, not whatever you might read on the internet. Doctors make assessments on a range of factors before making decisions about things like PEGs, it shouldn't be considered automatic. I'm glad I avoided one, but I don't think either path is a picnic.

You've found a good site here with some amazing people. I hope your treatment goes smoothly, please let us know how you go.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Chuck59 #188902 03-27-2015 09:33 AM
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Hi Chuck
Welcome to a fantastic group of people here at OCF.

Go ahead and ask all the questions you have . There is usually someone here who has gone through what ever question you have . We all pitch in our experience and are here to help .

Good Luck
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Chuck59 #188903 03-27-2015 01:37 PM
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No way could I eat orally after about 25 days into treatment. My sense of smell and taste were so fouled up that everything smelled abhorrent.

I had a PEG and had a love/hate relationship. I couldn't have done it without it. But the operation and the discomfort of having it are not negligible.


Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
Chuck59 #189082 04-09-2015 02:59 AM
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I was also diagnosed with the same. They went straight to chemo and rad without any surgery? Sorry if that's a dumb question. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Chuck59 #189083 04-09-2015 05:14 AM
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Denise the treatment plan can greatly vary depending on size, location and staging of the tumor. Each case is individual and slightly different. Treatment plans should not vary due to where the patient is treated but I would be surprised if the NCI guidelines were always adhered to at every facility. Best thing a patient can do is seek out the very best medical team of professionals they can and go with it. Second guessing only causes unneeded stress at an already very stressful time.


PS... Please use the link in the PM I sent you to make a signature. Thank you.


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
Chuck59 #189085 04-09-2015 06:07 AM
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Niecy... is your cancer oral (inside the mouth ?) or down the throat) base of tongue? Many confuse the two. If it is an actual tumor in or on your oral tongue (usually under on the side) It's generally best treated with surgery. There was an interesting video the other day about the standard treatment and covers all the standards of treatment. If it's related to HPV - base of tongue or tonsillar then rads and chemo is your best bet right out of the gate as this type of cancer (HPV related) responds best to Rads and chemo. However non HPV oral tongue, oral mucosa cancer is usually treated surgery first and then follow up with rads and chemo. That is the standard.

Hope this clarifies things. 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
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