| | Joined: Sep 2016 Posts: 3 Member | OP  Member
Joined: Sep 2016 Posts: 3 | Hello, just diagnosed with stage 4 throat and neck cancer.
Just looking around for some information. I have not started treatment, getting measured for the mask next week.
LPV, 62 years old, non smoker,
7/26/16 CT scan,
8/4/16 Biopsy base of the tongue findings inconclusive.
8/9/16 PET/CT scan
8/18/16 Biopsy base of tongue, confirms Invasive SCC Stage 4
HPV-16
9/18/16, 6,1" approx 187/lbs.
9/28/16 loading dose Cetuximab.
| | | | | 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 | Welcome to OCF! You are in the right place for info and support. We will help you get thru this.
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: 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 | Welcome to the forum. While you are waiting for the mask, have you got an appointment with your dentist to get a thorough dental check up? This is important as post radiation dental problems are common. Another thing you might want to do is to eat all your favorite foods now. It is likely that you will lose some of your taste and may not be able to eat a proper meal for a while once treatment starts. Please keep us posted.
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hello. I am sorry that you have need to be here. However this is the best place to come to for information on Head&Neck cancers . Nothing beats information from those that have been through this treatment. Please come here for any advice you need. Nothing is a silly question. We are all here to help and support.
For now, do eat up any and everything you like. Make it as high fat as you can. Pile on the weight now if you can as you will lose it through treatment.
Thinking of you, 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!
| | | | | Joined: Jul 2016 Posts: 85 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2016 Posts: 85 | Glad you found this site. The people here are fantastic. Reading old posts and topics help so much. I spent many, many hours just reading these posts. It has helped me get through each step of the way. Please let us know if you have any questions as we are here with you through this journey.
Sept 2002 Rt breast cancer no chemo or radiation.
March 2015 Rt tonsil cancer - walnut size lump rt side neck.
March 2015 Scan, biopsy confirm
March 2015 Port, G tube placed, 10 teeth removed.
July 2015 completed 5 chemo/35 radiations
Sept 2015 Cat Scan all clear
July 2016 G tube, port still in place
Ive had Thyroid "graves disease" and Lupus for many years.
4 kidney stone surgeries past 3 mo with over 100 stones still there !
*** Update... Jo passed away 12/20/17 ... RIP Jo ***
| | | | | Joined: Sep 2016 Posts: 111 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2016 Posts: 111 | LPV -
Set yourself up with a comfortable chair / recliner and get some extra pillows and blankets. You will be spending a lot of time sleeping or trying to relax. Try to remove any stressor(s) from your life. Focus on yourself and getting well.
If possible, get all of the small day to day errands done in advance. It will probably be awhile before you either have the energy or will to do anything other than just get through the treatments.
Stock up on some Ensure or other type liquids.
Most importantly, focus on the destination, not the journey.
Try to stay positive
Good Luck
1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue
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