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Joined: Dec 2010
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

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Fingers crossed its localized or local- regional is as far as it has gone. (lymph nodes) I know it's terrifying - truly - and after a recurrence hope is a bit shy in coming, but you are very lucky on certain things. 1 - you aren't at the point where you've had treatment and are facing a recurrence, because all options are still open to you. 2) this seems to be caught early, so likely no further involvement. 3) you're young and healthy -something that not every cancer patient has going for them, and finally if this is a second primary - and HPV related - as you've likely heard dozens of times.... It responds very well to chemo and rads.

You will get through this... Hugs and blessings to you!


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
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Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
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Posts: 596
Thanks, Bloop and Tammy.

As I read your signatures, I realize how much you both have endured. I hope to have a fraction of the strength that you both have. I wish for you the best of outcomes in your upcoming tests.

xoxo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Posts: 3,082
Kerri

You probably know all this but here is a nice summary of Petscans NIH Petscan Medline
The diet restrictions on Petscans are important. Your doctors probably gave you instructions but just in case:
24 hours prior to your appointment:
Refrain from consuming any caffeine, including any decaffeinated products for 24 hours prior to your exam. Note: Decaffeinated products still contain small amounts of caffeine.
12 hours prior to your appointment:
Stay on a low-carbohydrate diet. (
Do NOT engage in any strenuous exercise.
Do NOT chew gum.
Avoid mints.

6 hours prior to your appointment:
Do NOT eat anything.
Drink several glasses of water (2-6).
Take any prescribed medications as usual.
Best wishes
Charm

Foods NOT allowed:

Cereals Breads Pasta Rice Dry beans Gravies Fruit and fruit juices Jams and jellies Sugar and candy Honey
Starchy vegetables (such as: peas, corn, potato Milk (including non-dairy milk) Alcohol Coffee or Tea


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
Joined: Jul 2010
Posts: 531
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Jul 2010
Posts: 531
When Ron had his PET he drove himself home and they just gave him a card that said he was radioactive in case he had to fly out of an airport. And Bloop...I asked his Oncologist bout scans and they said no more...I WANT THEM! He said why would I put Ron thru that, they aren't painful right? I want to know how the cancer is progressing right? Is that fair to ask of a cancer patient, is that why you go? Sorry to steal your posting Kerri but I read all the postings in here, and I see clinical trials and all these things I really want to ask Ron if he wants to try anything instead of giving up...I wanted the tumor under his chin removed, they said the lung cancer will get him first, I had a horrible dream last night...even Ron said that the tumor under his chin will get him first...I want him to fight and to have surgery...I know this is his choice...but I think he can do it. I don't want him to give up just like Kerri and all the others here who keep fighting! I want him to fight too!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
Joined: Jun 2009
Posts: 875
"Above & Beyond" Member (500+ posts)
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Kerri:

Just another one of your OCF buddies letting you know I'll be thinking and praying for you today when you have your PET/CT scan and results.

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 smile
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Kerri Offline OP
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Posts: 596
Thank you everyone. I'm sitting here drinking my barium cocktail. Sue, I hope someone finally listens to you and Ron. For crying out loud! Patients KNOW when something is amiss. I knew deep down that my tongue was cancerous way back in the beginning and I knew that this was more than just tonsillitis. I wasn't willing to full believe that. I tried to "look on the bright side", but I kept my gut feelings to myself for the most part.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Apr 2009
Posts: 329
Platinum Member (300+ posts)
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Joined: Apr 2009
Posts: 329
Kerri,

Thinking about you today I hope every thing turns out in your favor. Keep us posted.


Connie ((Hugs))


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Aug 2011
Posts: 78
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Aug 2011
Posts: 78
Kerri,

Willing good news for you & short term pain for a very long term gain!!

All my very best & most positive thoughts!!

Sally


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
Joined: Dec 2010
Posts: 5,260
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Ditto... Good luck... And hoping for positive results... Also... You shouldn't have to wait more than 24 hrs for the results. Hugs!


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: Aug 2011
Posts: 596
Kerri Offline OP
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2011
Posts: 596
Got a call from my MO and the PET/CT results come back in sections. So far, the pelvis and abdomen are clear. She will call when she knows more. Later, I got a call from Dr. Deschler (surgical oncologist) and he said that my FNA was negative smile. I told him that I had my scan at MGH yesterday and they didn't have all of the results yet. He said that as far as he could see, the lungs looked clear. So, a little more news...all good. I see Dr. Deschler on Friday.


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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