#98565 07-01-2009 08:04 PM | Joined: Mar 2009 Posts: 109 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Mar 2009 Posts: 109 | I'm doing pretty well, I suppose. My taste buds are mostly back, mucositis is mostly gone, and those suffocating saliva balls no longer exist. I am still having tough tome eating normal foods.
Part of the reason is that I still have pain on the side where radiation was stronger, and it hurts to eat. I do eat, and I supplement with ensure, but it hurts as if I was pouring salt on an open wound. The doctors say everything looks fine. It doesn't feel fine. My gums near the flap hurt, floor of the mouth under the flap hurts, and the flap itself that should have no sensation whatsoever stings. I'm off the patch and take just a few percosets a day (amusing that FDA panel recommended today banning it, but I don't care), 2-3.
Somehow I thought that by now I'll be all healed. Is this pain normal? I don't when to start worrying. I am on monthly visits to oncologists and the surgeon, so nobody is due
to see me for another couple of weeks.
Also, they are scheduling me for the PET scan for the second half of July. If I'm still in pain, does it mean that something will light up on the scan even if it's not cancer, but a spot that is still healing? I don't quite understand how it would work.
38 yo@dx, female, non-smoker, non-drinker, SCC right lateral tongue. T2N2aMx stage IVa; 1/20/09 bilateral neck dissection, hemiglossectomy, micromets in 2 right nodes, left all clear. 33xIMRT + 3 cisplatins. Tx completed 5/08/09. PET scan 7/29/09 clear, 5/26/10 clear, chest x-ray 5/23/11 clear
| | | | | Joined: Oct 2008 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 49 | Jenka,
PETs only light up when there is cancer in there. The injection that you get prior to a PET is sugar-based, which goes directly to sugar-loving cancer cells. My hubby just had his first post-tx PET in May...it was nerve-wracking until the results came in...we had a hard time sleeping, but, all was well. Results were negatory for cancer.
Best of luck to you and as always, you and everyone here are in my prayers.
Last edited by Donna MFS; 07-02-2009 05:10 AM. Reason: double signature
Donna
Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | My husband finished treatments on April 15th. His Oncologist doesn't want to do a PET scan because he said there are to many false positives after this type of treatment. He wants him to have a CT Scan with IV contrast of his neck and chest the beginning of August after things have "calmed down".
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | 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 | Jenka,
Don't get discouraged as our recovery can and usually does take about 2 years to get back to feeling "normal", whatever that may be. The first few months are the worst and the first year is worse than the second but just be patient. Re the pain, call all your docs until you get some answers that satisfy you.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | The pet scans lite up and give false positives for sure, False flashes were going to delay my last aneurysm repair. It took 3 Drs to decide the fate of surgery day.
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Donna,
Pet scans don't only "light up" when there is cancer. This is the reason why there are so many false positives. Many people here have been freaked out by this and many, like myself, have never had a PET for that reason.
I thought you should know this.
Jenka,
Considering what you've been through, you are doing well. I know it's hard to believe, but it's along battle and you are well on your way toward feeling "normal".
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: Oct 2008 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Oct 2008 Posts: 49 | Jerry,
Thanks for that one...I am sorry if I said something controversial. I was told more than once about the "lighting up". I do know that T's scar tissue and staples lit up but, the CCC said that was expected. I guess it is all relative to where you go and who is reading the scan.
Donna
Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | The healing will also exhibit a high uptake, hence the high false positive rate. PET/CT will increase the accuracy because they can geographically visualize the hot spots a little better. In most secondary readings, i.e., by the ENT or RO they will rule many areas out as a "region of interest" (ROI). The primary reading by the radiologist must include ALL anomalies and it's up to the rest of the team to interpret that information. That's why the reports from the radiologist can scare the crap out of you.
Last edited by Gary; 07-03-2009 12:09 PM.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My 1st false positive was at Ohio State in Aug of 07 and it was still doing it in Jan of this year before surgery. Talk about confusion, we had plenty of it going on.Had to have more heart tests just to be sure of it and my lungs.
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 | Wanda, its so much better to wait rather than get a false positive. Also for a PET scan make sure your husband drinks tons of water the day before and avoids sugar and carbs. He shoudl kinda take it easy too. I had a scare before I found out you need to prepare for the PET. Best of luck with continued healing.
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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