| Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | So your instructions are to cut the water; Interesting - my center said water was OK.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Don, so many places have different instructions, as do the different staff members. I was just called, finally lol, for pre-treatmnt instructions, no carbs, which is different than low carbs, which others have instructed, I can drink water (my CT for stomach was no water) in fact, at another location I have to drink 16 ounces of water an hour before arriving, no gum chewing, no exercise, which I didn't do since yesterday. No one mentions brushing teeth or rinsing with mouth wash, but doing so may cause uptake from movement, and coat the mouth with sugar? Oh, and this new place likes to do CT contrast, bedsides the FDG-18 nuclear glucose tracer, but I can't do the CT contrast due to my kidneys, so they give me the barium swallow stuff, which I get to choose which flavor lol. This is probably my 13th scan. Maybe this time I'll be lucky.
Last edited by PaulB; 08-13-2013 01:32 PM.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | It seems the only constants are low/no carbs, water OK, and to not exert oneself too much just before the scan. Good luck with your scan. I'm about two weeks out so just in a holding pattern. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Thanks. You sort of get used to them, but anxiety is still there, and I often reflect on the past, previous tests, results, which were not always favorable in my case, and this one would be a milestone as far as being NED longer than 6 months.
Lol..holding area. I'm getting ready to take off! Best of luck with yours. Most post treatments scans are clear, in the high 90% range, if that helps.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Thinking of you Paul. Waiting for you to post great results. This time Matey. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | May your carbs be low and your uptake lower.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Positive thoughts and prayers Paul! May Mr. NED be waiting to meet you!
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | The anticipation continues...
Had my PET/CT scan yesterday, and had to lie about drinking some water in the morning, and was asked several times if I ate or drank anything, oh well.
Picked up my written report today from the diagnostic center, couldn't wait for the disc copy, and saw there may be some concern in level III. Met with my ENT next, who can access the scan, and then said he called the radiologist, and then the pathologist to see if a FNAB can be done under sonogram guidance, being there is a small spot in level III, where cancer was previously, which can't be ascertained what it is. If it's cancer, we'll deal with it, and was caught early, if not, I just went through some extra trouble, which I agree with. I doubt it is a reactive lymph node, being I had three neck dissections in this area. and the last cancer there was roaming, free cancer or extra-capsular spread, for lack of a better description, meaning cancer was floating around. Tomorrow I'll find out when my FNAB is scheduled, probably next week sometime.
Findings: The patient is status post revision of left neck dissection and resection of a suspicious mass in the left supraclavical fossa with placement of a pectoralis major flap reconstruction. Since 2/19/13 examination, there is interval visualization of a small lymph node along the superior deep aspect of the flap, immeditately lateral to the common carotid artery on images 76-78 measuring 7x3mm in axial cross-section. It is associated with focal metabolic activity, maximum SUV range up to 4.5
Impression: Since the prior PET/CT, there is interval visuslization of a hypermetabolic left level III lymph node along the superior derp margin of the reconstruction flap, immediatly adjacent to the carotid artery. The degree of associated metabolic activity relative to the size of this lymph node may take at least noteworthy. Distinguishing between a reactive node and a possible site of a new nodal metastic disease is limited based on current imaging. Sonographic correlation is recommended as the next step in evaluation.
To be continued....
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Paul,
Sorry to hear they found something. Happy to hear they found something early. It is very small; I'm surprised they picked up a 3mm nodule and the radiologist also comments about the SUV given the size. Do small nodes have limited SUV values since they are just plain smaller or does the SUV calculation include node size?
Anyway, you're still treading water my friend, could be better but could be lots worse. Hang in there, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2013 Posts: 78 | Good luck with the fnab. Hope it turns out to just be an infection or inflamation from the tons of treatment yohuhave been through. Let us know how it goes.
Andrew age 25
early 10/12 - enlarged lymph node area 01/13 SCC of L tonsil, L BOT, 2 L lymph nodes stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT 4/13 TX finished 7/13 PET/CT - NED!
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