#86972 12-30-2008 03:45 PM | Joined: Dec 2008 Posts: 20 Member | OP  Member
Joined: Dec 2008 Posts: 20 | Hello,
I've been reading the posts on this site and I want to thank everyone for all their help you didn't know you were giving me. I learned sooooo much about how to manage my journey from this fine group of people. It is so good to know that there are other people that understand this situation.
Yesterday was my first follow up visit with the Oncologist since the last treatment. Good report, he doesn't see any sign of the cancer now. And believe me, you could see it before.
That's how this all began. I had just gotten out of braces for TMJ problems when I developed a sore throat and was checking my tonsils for "white spots" when I saw one was larger than the other. I called my PCP and reported what I saw and was called in some antibiotics. Being in the health care field for 37 years, something told me this wasn't an ordinary thing. So, I did what any intelligent health care worker would do.... I googled it! "One large tonsil" and what do you know? No good news, I can say that. So I immediately called my ENT doc, with whom I was already established for Meniere's disease. At the time I did not know that he was a Head and Neck cancer specialist. I've been so blessed all along the way. I was already established with a periodontist also. This made getting appointments so much easier. Since then I have tried to make the Orthodontist and PCP very aware of what a unilaterally enlarged tonsil indicates.
So now I am 6wks out from xrt and 20 lbs. lighter, trying to wean off the duragesic patch for 2 weeks now. That has been, by far, one of the worst times during this journey. I had no idea my body would react as it has after stepping down to just hydrocodone.
I see a pain management specialist next week to help with this so I can go back to work Jan. 22nd. with my water bottle, my Biotene, and lots of prayers!
I hope I can be of help to someone along the way now like you guys helped me. May God bless all of you as he has blessed me
and continue your work here and now I will join you, ever so gratefully. Kathi
59 yr old female Rad Tech T2N0M0 lt tonsil
IMRT x 35, no surg, no chemo.
Last treatment 11/18/08. Dealing with L'Hermittes sign presently.
Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC
Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Kathi, welcome out of "lurking". Happy to hear that things are progressing.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | 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 | Hi Kathy. Nice to know how OCF has helped you. Welcome and its nice to have you here. Hoping you heal quickly, Happy New Year 
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | We love our rad techs. They're the best!
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | 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 | Kathi,
The water bottle will be your friend for many months to come. I even wanted to buy one of those water bottle harnesses that hung around the neck because I was always leaving my friend behind but I couldn't find one until I didn't need him anymore.
Be prepared for a long drawn out recovery and don't get discouraged it you don't recover as soon as you want to because none of us did. For instance it wasn't until my 15th month post Tx that I finally was satisfied with my taste recovery and even then I noticed a small improvement almost 2 years post Tx.
Just hang in there and go with the flow.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 20 Member | | OP Member
Joined: Dec 2008 Posts: 20 | Thanks for the welcome.That's the way my family knows I've been there, I always forget my water bottle and have 2 or 3 going at the same time. I thought about getting one of those "clapper" things so I could track them down. LOL
Happy New Year to everyone!
59 yr old female Rad Tech T2N0M0 lt tonsil
IMRT x 35, no surg, no chemo.
Last treatment 11/18/08. Dealing with L'Hermittes sign presently.
Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC
Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I probably left a case of water bottles at Home Depot alone.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I have found the perfect water bottle- flip top plastic reusable, dishwasher safe, there for you in the middle of the night - flip open drink and reclose - it is wonderful. Problem is, it is very hard to find. There are many copy cats, but its difficult to find just the right one. The joke around here is that if they find my water bottle somewhere but without me, they will know something untoward has occured as I am NEVER without my water.
Having had 2 bouts of radiation, my water bottle has become an extension of my right arm! It doesn't really bother me that this is a part of my life - just the way things are now. My "new normal". Positive side effect: I drink so much water that I can eat as much salt as I like on my food!
Always a bright spot somewhere, eh?
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Kathi,
I'm sure that you will be able to help others here. It's great that you knew something was wrong and didn't just settle for antibiotics. I also credit my being in the health care field for my early diagnosis. I'm sure my non-healing "sore" would have been ignored by many.
Happy New Year to you and I hope you are feeling better each and every day.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Hi Kathi,
Just wanted to join in with everyone else and welcome you to the boards. Happy New Year as well.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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