| | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | [quote=ChristineB]Gabadine??? may be the one medication that worked pretty well with the nerve pain. [/quote]
Gabapentin (or Neurontin) is the drug. Lyrica is another that's typlically used for nerve pain. My RO at Johns Hopkins just completed a study on Gabapentin and pain control in H&N patients undergoing radiation treatments. It worked well for me for a while.
I suffered some peripheral neuropathy due to chemo treatments and Lyrica along with Tramadol was very helpful in alleviating the issue.
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: May 2013 Posts: 11 Member | | OP Member
Joined: May 2013 Posts: 11 | They had to do an emergency trach last night. Neck was so swollen she couldn't breathe. She's in ICU but out of danger. With the breathing under control she can now have better pain meds and she just started the Neurontin. Crap feels like we're starting over again. Chemo and Rad about killed her this time.
My father died the first night of Chemo, I wonder if were just not cut out for it.
CG to sister Theresa
SCC Tonque DX Dec 2012
Surgery 5/13
Partial glossectomy w flap
9 teeth out
Titanium jaw blate
Rt neck disection
peg
trach out
3rd week of Chemo & Rads
Trach back in 8/24/13
| | | | | Joined: May 2013 Posts: 11 Member | | OP Member
Joined: May 2013 Posts: 11 | Sorry to report Cancer has spread like a wildfire. Neck,Lungs,nodes. Hospice has been called in and it's just a matter of time now. This horrible disease is going to take my beautiful sister from me, but it can't take her memory. I would like to thank all of you for your support and hope for the best
for this community. God Bless.
CG to sister Theresa
SCC Tonque DX Dec 2012
Surgery 5/13
Partial glossectomy w flap
9 teeth out
Titanium jaw blate
Rt neck disection
peg
trach out
3rd week of Chemo & Rads
Trach back in 8/24/13
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | I wish I had better words than just "I'm sorry." Praying for you and yours.
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: 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 | I'm so sorry to read this news. This disease is just not nice,
I hope Theresa is comfortable and without pain.
You have been a loving and supportive Sister. I will keep you both in my thoughts and prayers.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I am so sorry to hear the news. This horrible disease has no mercy. I pray God can provide you some comfort and peace during such rough waters.
"I am your strength and refuge..."
I also pray all the time you have left with your sister allows you both to feel the love. From a friend that just lost the ability to keep fighting last week he asked for everyone to not say he lost the battle but instead he chose peace. I wish peace for your sister.
Ed
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: 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 | Im very sorry to see your update about your sister. Hospice will help you with everything. Hope your sister is kept comfortable.
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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | I'm so sorry...... I hope your sister's days are filled with love.
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Wow that's crazy fast - I'm so sorry  hugs and much love to you
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 |
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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