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Good luck to you both!! So glad things are moving right along.
Keep in touch!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Feb 2012
Posts: 3
ida AF Offline OP
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Hello! Just done with PET scan this morning and now im waiting for the result. Going to meet the oncology and get him to write some official letter to my previous doctors. I changed my mind. I choose not to go for chemo. Actually i did signed an agreement letter sayin that i agreed to do chemo but now am cancelling it. Hope the hosp wont sue me or take any action.

Im full with radiation now. Glad they didnt transform me into incredible hulk ; ) The nurses asked me not to be near with small kids or even adult for 24 hours. At least 1 meter gap. Is that true? Have anybody experienced with PET CT?


Diagnosed with Tongue Cancer at 32 since 1st June 2011.
Located at the right base of the tongue.
Done with IMRT 35 x
1 cleared scan on Nov 2011

I don't smoke, i don't drink, i recycle
Joined: Feb 2012
Posts: 34
ALZ Offline
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Posts: 34
Yeah I am staying away at least 1m gap right now...and please do not turn into HULK!.. Bionic Woman sounds nicer don't u think? smile Glad that Ida courage back here he he...

So guys.. her tumor is located abit behind the tongue but didn't cross mid line yet.. doctor was thinking about neck dissection rather than jaw split due to radiation she received...

My question would be, how normal is normal u can be after the surgery...Its something we never know about before...no one we know in our life went through major surgery...



CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Glad to see the updates from both of you! About staying 1 meter away from small kids or adults, I've never heard of that. No one ever suggested that to my son during his Rad Tx - maybe someone else will have more info on this. Re being "normal" after surgery, I think it would depend on the type of surgery. My son had 48 lymph nodes removed and when I first saw him right after surgery in the Recovery room, just beginning to wake up it was hard to see him looking so vulnerable, but the nurses were right there checking on him and making sure everything was going ok. It really helped to have my daughter and nurse-friend with me. Be sure and ask all the questions you can think of (make a list) with the doctors beforehand. Being prepared makes things go a lot easier and helps you feel better about what's happening.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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"OCF Canuck"
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I'm beginning to wonder what kind of radiation Ida had?!!!! Did they do it with a mask and machine or was it seed implants or injections??? (totally the wrong treatment for his kind of cancer!!!!! if its the injections and/or seeds) that's generally used for thyroid cncer which is a low grade cancer!!! And the protocol is to stay away from others for a certain amount of time because you are actually radioactive!!! Ida - Alz please clarify? What kind of radiation did you have? Describe the procedure.., (if it is the seeds or injections then no wonder it didn't get the tumor!) ps don worry abou being sued no on can fore you to have a treatmnt you don't want.

Thanks!


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: Oct 2011
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KP5 Offline
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It was after the PET. They told us the same thing. They said no cuddling with kids or older people.


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
Joined: Feb 2012
Posts: 3
ida AF Offline OP
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OP Offline
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Joined: Feb 2012
Posts: 3
Taking a day break today.. After 4 days in a row in and out to the hospitals seeking opinions. Glad its really worth it.


Diagnosed with Tongue Cancer at 32 since 1st June 2011.
Located at the right base of the tongue.
Done with IMRT 35 x
1 cleared scan on Nov 2011

I don't smoke, i don't drink, i recycle
Joined: Feb 2012
Posts: 34
ALZ Offline
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Feb 2012
Posts: 34
Yep its the PET Radiation... but its over 24 hours now.. so its ok!!!..

We have consulted the surgeon and he really did explained quite well (with drawings and xray of the mouth). Now we just need to pray everything will go well and what we targeted can be achieved..

Ida is taking a break.. I still have to work ofcourse.. LOL..


CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins
Joined: Feb 2012
Posts: 34
ALZ Offline
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Feb 2012
Posts: 34
Hey Cheryl,

Its just PET Scan she was saying about smile.. She had done with the mask IMRT last year.. so proceeding with surgery for this recurrence thing.. wish us luck!!!!


CG to Ida (33yo f)Tongue CA Stage 1
02/07/11 Biopsy
15/09/11 35x IMRT done
07/11/11 CT Scan - Cleared!
02/12 - Abnormal bump discovered -
27/0212 -Biopsy done
It's back!!! wTH....
Surgery Done , 3cm margin and 55 negative nodes cleared
Rehab begins
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Oh sorry!!! Obviously I was half awake when I read the post. The don't do PETs here so perhaps that's why I've never heard of that. Though the cts do use radioactive contrast as well... I have heard that rule with with radiation implants and seeds etc... For thyroid cancer - thats why I freaked... Have a great day off!!!


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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