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#98852 07-06-2009 09:26 AM
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Well, my PET scan is scheduled for Thursday at 1:00. Now that it is finally scheduled I am more nervous than anything. I can not wrap my mind around this. Likie many of yoy any little pain I have, I get worried about it. I know some of you have said that there is some preparation involved before having a PET. What is that preparation? I was just told that I could not have anything to eat or drink 6 hours prior to the scan and had to drink 16 ozs of water one hour before the scan. Is there anything else that some of you did?

Last edited by walknlite; 07-06-2009 09:26 AM. Reason: typos

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
walknlite #98856 07-06-2009 11:56 AM
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I received detailed instructions esp diet etc prior to PET SCAN and a warning of zero exercise 24 hours before. Here is a link to a list of common PetScan preparations, which I did before mine PetScan diet/prep
Relax, it's easy. the hard part is the potential false positives. Push back on the radiologist if you don't understand it, I had them do the entire report over on one of mine.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #98857 07-06-2009 12:18 PM
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It is normal to freak out at anything and everything**. I almost convinced myself that I had a problem about 2 month out of radiation, when I got a lot small blisters (roof of mouth) every time I was eating something.. (=big nothing, minor salivary glands working again)

Re Pet
1) no exercise and NO running around and hurrying before the scan. This includes getting to the center.
2) you may get an oral contrast agent to drink before the scan (for CT)
3) they will measure your blood glucose level and if ok inject radioactive glucose. No big deal, do not freak out because of the strange syringe.
4) you the rest for 45 minutes or so. Try to sleep, you should not talk
5) then the scan you, try to stay still and do not move your tongue/chew or swallow too much. Unless they tell you otherwise breath normally.
Depending of the scanner this should take 20-30 minutes.
6) then get coffee etc!

Best!

M

** of course that presumes that I am halfway normal...



Last edited by Markus; 07-06-2009 12:36 PM.

Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #98859 07-06-2009 12:34 PM
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I only instructions I have been given were to wear loose fitting clothing, no excercise 24 hours prior, and nothing by mouth 6 hours before the scan.


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
walknlite #98887 07-06-2009 06:41 PM
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Take something to read during the 45 minutes. I have had it a few times and never could sit still so I took a book and another time a poker machine. Just whatever you enjoy that you can do sitting quietly.


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
EzJim #98889 07-06-2009 06:49 PM
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Charm and Markus, thanks for the info.

My center has never given me all these specifics but thankfully from being an OCF member, I know this info.


Christine
SCC 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 smile
ChristineB #98893 07-06-2009 07:04 PM
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Jim,
they turn down the light where I go. Your are supposed to rest (sleep if possible) no talking, no chewing etc. ... nothing that may increase the chance of a false positive.

M



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #98904 07-06-2009 09:02 PM
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I was able to pick a dvd and watch that for about an hour before the PET scan.... go figure!!

It was Robbie Williams in concert - so I was singing my heart out - no piece and quiet for me.

Hmmm sure makes me wonder about some of our facilities here...nothing would surprise me anymore that is for sure

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Karen Rose #98914 07-07-2009 03:40 AM
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The hardest part of the PET scan is a tie, waiting for the results or dealing with the false positives...I can't pick which one sucks more.

I worry about every little pain as well, thinking "this is it" at any little lump or jaw pain that I experience...My ENT told me to stop torturing myself and to keep the "F" off the internet sometimes...if only he knew. I love that guy though.

Be well
Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #98921 07-07-2009 05:32 AM
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I was also told to remain totally quiet and close my eyes while I waited in my semi dark room.


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.
davidcpa #98928 07-07-2009 06:02 AM
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I was told no carbs or sugars of any kind. High protent diet only the day before. I was NPO after mid night. And I was in a dark room for the 45 minute wait. They told me not to even look around. Just close my eyes and relax.
Strange how the rules change from one place to the next.


40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
davidcpa #98940 07-07-2009 09:33 AM
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FYI,
Copy of my PET/CT Prep Sheet:


How to Prepare for your PET Exam

Exam Location: � Sharp Imaging Center - Mira Mesa

Name: _________________________________________________________________
Date of Exam: _________________________ Time of Exam: ____________________

� DAY BEFORE YOUR EXAM

1. Patient should eat a low carbohydrate diet.
2. Patient is not to engage in strenuous activity or exercise. If job is not too labor extensive, the patient may go.

� DAY OF TEST

1. No food 6 hours prior to test.
2. No caffeine or nicotine products 5 hours prior to test.
3. No diuretics the day of the test (water pills, lasix). Take all other medications as normal.
4. No gum chewing, no hard candy, and no breath mints the day of the test.
5. Drink 16-24 oz. of water prior to test.
6. Drink plenty of fluid after the test to flush out the system.
7. Wear comfortable clothing. Room temperature is approximately 72 degrees.
� PET/CT sites � NO METAL ON CLOTHING
8. Test takes 45-90 minutes. Total time is 2 hours.


� TYPE TWO DIABETIC PATIENTS ON ORAL MEDICATIONS

1. Low Oral Carb Diet the day prior to test (should be no problem since the patient should be on a diabetic diet)
2. NPO (fasting) for 6 hours (minimum 4 hours) prior to the test.
3. If the scheduled patient time is very early in the morning (7am) the patient must fast and NOT take oral medication.
4. If the exam is later in the day, the patient should eat a light low carb meal and take their oral medication 4-6 hours prior to the test.
5. Patient may only have WATER ONLY during the 6 hour fasting period.


� TYPE ONE DIABETIC PATIENTS ON INSULIN INJECTIONS

1. Low carb diet the day prior to test (should be no problem since the patient should be on a diabetic diet)
2. If the scheduled patient time is very early in the morning (7am) the patient must fast and NOT take insulin medication.
3. If the exam is later in the day, the patient should eat a low carb meal and take � insulin medication at least 4 hours prior to the test. Please have patient bring the other � of the insulin medication with them to take after the test.
4. Patient may have WATER ONLY during the 6 hour fasting period.
5.

If you should have questions regarding your exam preparations call between the hours of 8:30am and 4:30pm.
Mira Mesa � (858) 653-6130


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

EzJim #98976 07-07-2009 06:11 PM
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The techs told me I couldn't even read. I couldn't do anything that could potentially create energy, which would attract the radioactive stuff. They told me not to think too hard, either. I didn't have much in the ol' noggin that day, anyway.

They turned down the lights & closed the door. So, I closed my eyes or stared at the wall for the prep time.


Marlene


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!
Marlene41 #98978 07-07-2009 06:22 PM
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I am not good at sitting still. I think this is going to make me go nuts.
Why do you have to avoid carbs 24 hours before the scan?


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
walknlite #98986 07-07-2009 09:12 PM
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You need to have a low blood glucose level, so that when they give you the radioactive glucose it goes to the metabolically most active cells. These happen to be cancer cells, but there are also other possibilities. If you were to be active once you get the glucose it would end up in the muscles that were exercised.

....try not to think to hard.... too funny!!! But you certainly should not agitate yourself.
If you look at a PET/CT scan have take a peek at your brain. The energy source for your brain is glucose and therefore it lights up like a christmas tree (which is normal).


M


Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Markus #98994 07-07-2009 09:57 PM
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Also don't talk.... it will cause our throat to light up, and you don't want that for a false positive in an area they really want to look at. From the time of injection to the end of the scan there isn't anything that you need to say.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
davidcpa #99129 07-09-2009 06:00 PM
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I had my PEt today and they told me that My Dr. would have the results tomorrow. I sure hope to find out.


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
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