| | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Congratulations on being done with radiation! You are doing great! Wow! You've done so well, your doctor is probably right on target with the estimate on when you can return to your usual routine at the gym.
Best wishes as you transition from patient to survivor!
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-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 | Re the Camelback, I also bought one thinking I had to have one to ride. First time using it I found it to be a constant drain on my speed as every 7 seconds I had to put that thing in my mouth. I did find that by using Biotene gum and keeping my mouth closed as much as possible and definitely not engaging in conversation with fellow riders, that I was able to do without it and just drink from my bottles as normal. Brand new only used once Camelback for sale!
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: Oct 2011 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2011 Posts: 27 | Thanks for all the kind words and advice. I finished up my radiation on Monday. Said my goodbyes to all the Techs and Admin folk, gave my favorites bottles of champagne and told them that I hope never to see them again at work. Currently my mouth/throat feels like a combination of the following; just finished eating a hot slice of pizza, a sore throat and biting my own tongue.
I have been grabbing a nap 1-2 times per day (it helps having a three year old at home) as have been feeling a bit rundown.
Food still consist of oatmeal with banana and protein shakes.
I have my trainer tomorrow (for the first time in 3 weeks) so will be interested in how much I can push it.
How long did it take for most of everyones mouth to heal? I am fortunate that I did not have Chemo and that they had the lasted IGRT kit at University of Miami (have not really had much of an issue with dry mouth)
Also I was making it a point to breath through my nose when sleeping with going through radiation. Does it matter if I breath through my nose or mouth when it comes to the mouth healing?
50 yr old, male
SCC of Lymph node right side of neck - 6/30/11
Biopsy: 8/23/2011
MND Right side- 9/19/2011 - 18 nodes - 17 clear
T1N1M0 source on right tonsil tissue
HPV+
IMRT 33 sessions started 10/18/11. Finished 12/5/11
No Chemo
| | | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2010 Posts: 167 | I remember the feeling! What our poor mouths have been through! I think my mouth really started making progress as week 2 moved into 3 and then even better by week 4!
You are doing so well! Congrats on making it through and working so hard on your recovery! Hope things went well with the trainer - regaining physical fitness was a bigger challenge for me that almost anything else. It takes time and patience was hard to find! Be easy on yourself!
Definitely better to breathe through your nose - the mouth can heal better when it's moist - dry mouth creates an unbalanced and abnormal environment!
Keep doing what you're doing Laz!
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Laz, you continue to amaze me. Sounds to me that you're at a point right after RT that took me months to reach! Fantastic. I agree with the nose breathing if you can do it. I've always had blockages so it's tough for me.
And do go easy for awhile. That you're able to eat anything solid is wonderful. Again, that took me 4-6 months.
Congrats!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Oct 2011 Posts: 27 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Oct 2011 Posts: 27 | Sorry to take so long to check back in. You were right that the effects of radiation hung around for 3-4 weeks after final rads. Putting the weight back on has been a challenge, though I think that much of it was not drinking any beers.
Taste is back, saliva is about 80% of the original. I have to really thank the team at Sylvester Hospital at the University of Miami in Miami.
Back to playing lacrosse again (started back in April). The mouth gets a bit dry during games, however just need to keep an extra water bottle on the sidelines.
Just has my ~1 year PET this past week then went to London for the Olympics (which was fantastic). Hoping for good news when I meet with my Dr next week (not expecting any bad news as all has gone as planned) Will keep you all abreast.
Hang in there and I hope/trust that all is good and/or getting better in your worlds.
Last edited by Laz; 08-09-2012 03:22 PM.
50 yr old, male
SCC of Lymph node right side of neck - 6/30/11
Biopsy: 8/23/2011
MND Right side- 9/19/2011 - 18 nodes - 17 clear
T1N1M0 source on right tonsil tissue
HPV+
IMRT 33 sessions started 10/18/11. Finished 12/5/11
No Chemo
| | | | | 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 | Sounds GREAT. It's all up hill from here except that "getting older" part of life!
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: 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 | Wow, Laz you are doing EXCELLENT!!!! I love hearing from survivors like yourself, it gives so many other hope that they too will get past their struggles.
I bet the London Olympics trip was the trip of a lifetime! I watch it everyday on tv and think of what it must be like to be there in person. Im in awe of the amazing athletes who work so hard for just a few minutes of competing to be named the best in the world. That is true dedication.
You will see small improvements right up thru 2 years post rads. Best wishes with your continued recovery!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad you are doing well!
Last edited by Cheryld; 08-10-2012 07:07 AM.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Great job Laz. You must be relieved and smiling.
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
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