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"OCF Canuck"
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"OCF Canuck"
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Best of Luck and good luck on the second opinion, the up and down and inconclusiveness of it would have me seeking out a second opinion as well. 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
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"OCF Kiwi Down Under"
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Kudos to you Jay. So pleased you have found the option of a second opinion and treatment in Korea. You sure do need answers and clarification.
Love is a very powerful thing. Not to be underestimated.
In my thoughts and prayers, 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!
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Jay - I'm so glad you are considering the second opinion, especially in view of the positives like how well Jen is doing physically, and even though the doctors have expressed some uncertainties which they see as negatives, these very same uncertainties can very easily develop into more positive outcomes. You and Jen have every reason to pursue getting more answers to your questions and to keep hope alive! Plus you have prayers and good thoughts coming from everyone here!


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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"OCF Canuck"
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Yes more than anything you want to know for certain, this emotional turmoil can do a number on your wife's emotional state and mental health - with very much effects physical health, plus ambivalence and uncertainty tells me there is definite hope. saying well we're sure there is cancer in there even though we didn't find it tells me they are playing with crystal balls and basing their dx on experience rather than definitive fact - that's a slippery slope in that she may have something going on that's unrelated, or something that is clearly treatable. Hugs and hoping to hear positive news soon.


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: Mar 2011
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"OCF Kiwi Down Under"
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Hi Jay, thinking of you and Jen. Wondering how things are going for you in Korea. Have the Docs come up with a diagnosis and treatment plan for Jen.
I'm sure that bring closer to family is of itself a great help.
Please let us know how it's all going when you have time.
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: Oct 2011
Posts: 805
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Thinking of you all Jay. Anxiously waiting for an update.


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: Sep 2012
Posts: 145
"OCF Down Under"
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Thanks everyone for their well wishes and we are keeping strong despite the difficult situation Jenny currently faces.

Since my last post, we have met three more specialist doctors who have pretty much said the same thing as per our doctors back in Melbourne - the cancer is now terminal and we have two options:

(a)Receive chemotherapy (Combination of 5FU / Taxatol + Erbitux) in hopes of slowing down the spread of the cancer and reducing the size of the tumor in the lungs. Unfortunately, the toxicity from this treatment regime is incredibly high and the benefits from such treatment are generally minimal and will have adverse affects on Jen's currently good health status.

(b) A wait and see approach as the cancer is currently in idle (no growth since May till now) and Jen is showing no symptoms whatsoever and is in good health despite the poor diagnosis. Monthly CT scans + check-ups will be scheduled and Chemotherapy + Tomotherapy will be used as a palliative option later down the track if required.

Jen & I are leaning towards option (b) at this point as the cancer is not causing any issues at this point and is in a holding pattern. A final decision on course of action will be made once the results of our next CT scan scheduled for late September is received to see if the cancer remains as is or shows additional growth.

In the meantime, we have decided to use this time to go enjoy our time with Hunter and ensure we do everything possible to make sure Jen continues to feel fit and healthy. Going on a strict diet (Paleo) + routine exercise + having a good'ol laugh with Hunter (most important!) will be our treatment plan for now and I am confident that this will have much higher chance of beating this thing than any chemotherapy regime.

I guess the unknown of how long this holding phase will last is what concerns us the most at this point of time (it may be a few months to many years.. the doctors are unable to say) but at least we have some sort of plan and course of action to adhere to during all this confusion.

We thank everyone who have been praying for us and wishing us luck. I guess one thing that I have learnt from this journey is that there is a lot of good people out there in the world and it makes us feel that much more at peace that Hunter will still be living in a society where good still prevails.



6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
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Jay,
I'm sorry to hear the results of your consultations. You have great strength and passion and focused on the right things. I pray for you and your family. 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: Apr 2011
Posts: 267
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Posts: 267
Jay,

I'm so sorry to hear that you and Jen are dealing with such a difficult diagnosis. Our family will keep you in our thoughts and are praying for Jen's continued strength and good health.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Thanks for getting back to us, Jay. And so sorry for all the uncertainties you and Jen have had to face. I am so hoping and praying that the "holding pattern" you describe for Jen will continue to help her feel fit and healthy and that there will be good times and good news ahead for all three of you. Stay strong Jay, and stay with us.


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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