| Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | He didn't have a lot of side effects with them. 
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: Nov 2013 Posts: 33 "OCF Canuck" Contributing Member (25+ posts) | "OCF Canuck" Contributing Member (25+ posts) Joined: Nov 2013 Posts: 33 | PaulB simply reading your profile has made me gasp, but to read about the hurdles you go through daily makes me wish, so badly, that I could do something to help you. Thank you for all the work and help you put into this site. Good luck with all your treatments. You are a leader.
Ja 2013 tongue, red sore spot, r/r edge + white strip underneath, no pain Al Bx on spot, strip, and vocal cords, lab rep benign Oc 24 Surgeon follow-up, larger Bx req'd Oc 25 Bx bits to Vanc. Cancer lab No 14 MD said more ca investig'n req'd No 19 Prince George CC, MRI & CT No 20 PGCC Oncol says cancer De 2 Vancouver Cancer Centre, PET/CT De 31 VGH partial glossX + ex spot on vocal cords
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 |
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Still waiting on radiation treatment to start, but still no word, probably due to all the radiation, surgery I had, and continue to see my other doctors. I have three teeth infected in the gums, and nothing the oral surgeon can do, no extractions until HBO, no HBO until there is no cancer. The oral surgeon put me on three weeks of antibiotics, and hopefully that will help, and go back on Thursdsy for follow-up. Needed some scripts from my PCP, and blood pressure was 179/93, and saw my oncologist today, and was 150/100, so I have to see the cardiologist before treatment. My hemaglobin went up to 9.9 from 9.2, in a few weeks, which usually goes down, but it could have been lowered by surgery, radiation, and is recovering from that, and not being killed off. Tomorrow, I go for chemo training with the nurses, I guess to review side effects, nutrition, hydration, infections?
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: Sep 2013 Posts: 94 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2013 Posts: 94 | Urgh Paul, this is so beyond my knowledge that I can not say anything constructive. Just wanted to say that my heart goes out to you and that I can not even imagine what you must be going through. Your courage is an inspiration. Sending all the healing thoughts and positive vibes I have.
36, female, left tonsil HPV+ SCC, T2N1 8/28/13 SCC in left tonsil 9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed 9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL 10/28/13 rad begins, 30 treatments, tomotherapy 12/09/13 radiation ends! 2/10/14 papillary thyroid cancer 2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst 2/27/14 thyroidectomy 3/5/14 pelvic ultrasound
| | | | Joined: Nov 2013 Posts: 34 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 34 | Hey Paul, I second what Ambra has said. You are an inspiration. I realize sometimes it is almost overwhelming to me, but to hear your ordeal is a whole new level. keep fighting the fight, I hope you get your HBOT dives in soon and you have slayed the beast. Ambra, congrats on finishing your rads. hope you are doing okay.
discovered a golf ball in my neck St.Paddy's day 2010. Dx stage 4a left tonsil ca may 2010 at 50 non smoker, moderate beer drinker HPV-16 pos. tosillectomy 9 weeks Cisplatin 35 rads nov.2010 PET NED 2011 2x PET NED 2012 2x PET Ned 3/13 Pet NED SEptember 2013 Pet uh-OH.questionable and anxious follow up pet, yup, its back. mets to sub clavivular and mediasteinum nodes biopsy positive scc. trying to figure out next step my imaginary friends think I am crazy.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 |
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: 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 | Paul, I'm sorry the dental issues continue and really do hope the antibiotics settle the infection down. Can you ring the radiation doc and push to get this rolling for you? Though of course you may want to wait until after Christmas. At least your haemoglobin is trending in the right direction. The BP still needs a bit of fine tuning, guess the Cardiologist will sort this for you. Hope you get all the reassurance you need from the chemo Nurses to be relaxed enough and calm for the chemo. I understand your worries given your previous history. You are like the energiser bunny - just keep on keeping on. 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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Thanks Tammy. I spoke with the radiation oncologist last week, and the physicist is still working on the treatment plan which takes 3 weeks, so it's almost that time next week, but feels longer. My oncologist is going to be in contact with the RO. I previously asked about starting after the new year, and said, no, ASAP? I can wait too. Calling tomorrow for a cardiologist visit, and have one I've seen before for a stress test for surgery, and hope to get one next week.
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 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | Paul... clean is your friend. I an not sure how sore things are in your mouth. But if you don't own a waterpik... try and get one. Even if you spritz on the lower setting.
After each and every meal.. brush rinse and spritz.
antibiotics will help, and then keeping the area clean will help.
It's the same premise as flesh wound. It's a slow process but your mouth carries mega bacteria etc... so keeping the area clean will minimize progression of the infection. Rinsing with the baking soda etc.. should help as well. You want to rinse out any particulate and gunk. If you are using the waterpik clean along the gum line and make sure to angle it away so that you are not pushing bad stuff under the gum. You mostly want to clean between your teeth and along the gum.
Be meticulous.
take care. 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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