#84707 11-24-2008 09:07 AM | Joined: Nov 2008 Posts: 12 Member | OP  Member
Joined: Nov 2008 Posts: 12 | My name is Charlie. I was diagnosed with Tonsil cancer in June 2008. I just completed radiation and chemo therapy, and I am now recovering. I am interested in learning about the recovery from the side effects, and of course interested in all related information associated with surviving cancer treatment. Eight years ago I had a kidney removed because it contained an encapsulated tumor. So this oral cancer event is the second time I have dealt with cancer. Regards to all who are on this site. Charlie  | | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Hi Charlie:
Welcome! I am so glad you are in recovery. I do not have a lot of information myself reguarding radiation and chemo as my cancer was removed surgically. But have no fears there are many people here who have a vast amount of knowledge, support and kindness to share. You have definately come to the right place. Sounds like things are going ok for you and I hope it continues and soon this will be just a memory.
Take care
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Welcome to the Land of New Normal!
It's important to 'use or lose' things like swallowing and opening your jaw.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Hey Charlie, I could not tell from your "signature" when you finished tx. As you can see, I had surgery 14 months ago and finished radiation 10 months ago. During these 10 months, my taste buds have returned ( I'd say about 90% ), all the real nasty side effects of radiation have left me, and I continue to look for improvement in throat constriction and the regeneration of nerves in my neck and side of my face. Doctors and others on this great site tell me you really need to give it 18 months or so following treatment before you can say "this is my new normal" for life. Anyway, I hope you're doing OK and wish you a strong recovery ( I would say speedy recovery but it just doesn't happen with what we're dealing with ).
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | 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 | Charlie,
It will be helpful if you tell us what side effects you are dealing with and as Bill said, when you completed your RO and also what type of Radiation and what type of chemo, etc. I am over 2 years post Tx and I have little, if any, remaining side effects to deal with.
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Charlie-
Welcome to the boards. There's a lot of information that you can search through about side effects of treatments and recovery. Or if you can't find what you're looking for, ask away. You'll get a lot of good advice from everyone on here. Good luck with your recovery!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Hello, Charlie. I too had tonsil cancer treated by rad and chemo. My tx ended mar 20, 2008. So far my taste is still pretty messed up. My sweet toothe has returned so I can eat things like ice cream and fresh ripe fruit but not muach else. I'm told my salivary glands may not come back at all so, everything will have to be washed down with plenty of water. Shortly after tx ended, I came down with shingles which I was told is a common problem because the immune system has taken such a hit. I also had to go to a speech therapist to work on my ability to swallow. Other than that, my energy level is getting back up, gaining a little of the weight I lost and am back to work full time. Good luck to you. Everyone's experience is different.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Sometimes we don't even notice the symptoms -- I did not realize I had a jaw opening restriction because I wasn't eating anything very large -- It wasn't until I tried to take a bite of an apple that it dawned on me!
BTW, the apple tasted terrible... Two and one half years out, I still don't taste sweet stuf very well (losing the front half of my original tongue didn't help that, of course).
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Welcome aboard Charlie.. I'm still a rookie with after Affects in here. Get rhu one thing and get another, These people will keep you well informed and up to date.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Charlie:
Welcome to OCF. You will find lots of help and guidance here to assist you in your recovery. When did you finish tx? Do you have any side effects that are bothering you? Please feel free to ask questions, there are many here that will help.
Please update your signature when you have time. It will help us to get to know you better and easier to answer your questions.
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  | | |
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