| | Joined: Feb 2014 Posts: 24 "OCF Canuck" Member |  "OCF Canuck" Member
Joined: Feb 2014 Posts: 24 | Bart can you send me that PM too ... "dont get attached to outcomes"
Its seems like its great advise
Fish ... you seem so positive ... My husband starts Rads in 2 weeks and I would love to keep in contact with you during the process for tips and help
Caregiver to Husband
Hubby Age 43
Was diagonosed with Buccual Muccusa Squomous Cell Carcinoma on Feb 13, 2014
T2 N2(not 100% sure if they are malignant) Stage 2 or 3 Not sure bc of Nodes
Surgery took place on March 17. They removed the tumor with 2 mm margins. Flap from left arm inserted into Cheek. Skin graft from left thigh to put on donor site.
37 nodes removed. 3 at level 1 malignant.
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 |
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Nov 2013 Posts: 37 | Just a quick update.....I have my first CT scan and recieved results last Monday...NED! I had my surgery on 12/26/2014 and they took the tumor out with clear margins all around. I started radiation on 2/6 and ended on 3/19. 30 treatments, no chemo. I have started a cancer reoccurence reduction program called LIVING! I am so busy right now I don't know how to squeeze another second into my schedule! For those reading this who are still battling this, stay strong and come to this board often for advice and support. I have gained a great deal of information and encouragement from this site and am truly grateful to the members of this "club". I will keep everyone updated monthly to report on my progress. I have some soreness where the flap was attached but my ENT visit yesterday told me this is normal and it takes longer for the tongue to heal. I am eating well, food tastes come and go. I can talk almost normal (I really don't know if I was normal to begin with). I enjoy non alchoholic beer, especially after doing lawnwork. Physically, I'm good....I got back on my bike and have been riding a litle bit. I am trout fishing this weekend and crappie fishing next weekend. I took my boy out to watch the Royals game last night. Even though we lost we had a great time. Isn't it amazing to wake up and be able to look outside and know that your still in this world!!!
Cheers!
Fish
Last edited by fish; 05-16-2014 09:40 AM.
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Congratulations on being NED!
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | 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 | Great news Mr. Fish! Where is this trout and crappie lurking right now? Heading up close in a few days. If I make it that far I will holler at you. Just need to know if I should have the fly rod and ultralight with me!  Ever hit Taneycomo? Unbelievable rainbow and brown. I've caught a ton of crappie at Smithville by the bridges. You hit it out of the park! Great job. Have a great weekend and I'm anxious to hear about "Living".
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Fantastic and inspiring report! Glad the new normal is nothing you feel any loss over as the new one seems pretty darn good!
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 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | Great report and a great attitude, you will do much to help the new guys who come along in your footsteps.
I'm interested in hearing about the Living program also.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | 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 |
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: 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 | Congrats on the great check up! I love seeing such positive improvements!
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Continued Great News, Fish! I'm very glad to read this, Keep on Truckin', brother!
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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