| | Joined: Dec 2009 Posts: 24 Member | OP  Member
Joined: Dec 2009 Posts: 24 | Hello everyone! I have good news to share with all you great and supportive people. To day I got the results from my pet scan and it came out ALL CLEAR!Now if I can just get my tongue,throat,taste buds,and my saliva glands to work I would be able to get rid of my peg tube.I try to eat and nothing taste right and all the food just sticks so bad to my teeth I have to take my tooth brush to remove it.I tried water to swish and shucks it really does not work.It has been two months since my last treatment.I do still have the thick stringy saliva. any thoughts?
nov30squcelldec209tonect no treat yet "positive people +positive thoughts brings positive tomorrows"db
| | | | | 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 |
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 | Hi Don, congrats on your all clear report!!!!! Dont worry about eating, it will fall into place, just keep trying. You are just past tx so it will take a while, for me, I was doing pretty good at 4 mo post tx. Dont get too anxious, the mucous will replace the dry mouth soon enough. Hoping you continue to improve at a good pace and best wishes 
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: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | I can't help you with the saliva, but I can give you a BIG WOOHOO for the clear scan! What great news!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 |
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Apr 2010 Posts: 17 Member | | Member
Joined: Apr 2010 Posts: 17 | Congrats on the test results. I understand where you are coming from on the saliva thing. I pretty much sailed through RX treatment, then 2 weeks after I finished, I had a terrible taste in my mouth show up plus this thick mucous. Sometimes I nearly gag. I am six weeks post TX and have been told it could take up to a year before it improves. Everyone is different. None of us get by w/o any issues cropping up. I manage to eat just fine but food does not taste nearly as good. Can't complain when a lot of folks cannot even eat. It's just one day at a time, all any of us can do.
58 yrs Female
Vocal cord cancer T1NOMO
DX 3/05/10
Started TX 3/18/10 with IMRT 39 total treatments
Smoker- quit at DX No PEG
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | How wonderful, Don. I hope every PET and CT scan you have in the future has the same results. As far as the thick saliva, it's like Christine said, "Dont get too anxious, the mucous will replace the dry mouth soon enough." For me, it's been about 2-1/2 years since my treatments ended, and I still have the crappy thick mucus problem. But, others don't! So, you may get rid of both the mucus and the thick saliva as times goes by. I sure hate mine, but it beats the alternative.  So, just take one day at a time and try to cope as much as you can. Congratulations, again on the PET news. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | That's terrific, Donald. Best news possible although I know how difficult the side effects can be. Hang in there, things will definitely improve!
David (another of us)
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 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Hi Donald,
Great news, as far as the rest it will all take time. I know that when I was at 6 mo. past treatment things started to improve. So be patients it will all take some time and keep Reading and learning from this site.
Take care,Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 |
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
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