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Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
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"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Hi Jay,
I just wanted to say hi from a fellow Aussie and to let you know that I have been following your posts.
The information you have been given here is first class as usual and at this stage there is nothing I can add right now.
It seems that you and Jan have a wonderful attitude for what is a very difficult time for the 2 of you and your extended family as well.
It is also wonderful to read that you have some great support getting you through this.
I just wanted to wish you all the very best for the further upcoming treatments and to let you know I will be there with you in spirit and looking for your updates.
Gabriele



History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Sep 2012
Posts: 145
"OCF Down Under"
Senior Member (100+ posts)
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"OCF Down Under"
Senior Member (100+ posts)

Joined: Sep 2012
Posts: 145
Thanks Gabe for your words of encouragement!

Although I am not an Aussie (I am from across the ditch!), I have been calling Melbourne my home for the past 7 years, and have enjoyed every moment of it!

Furthermore, going through the health care system here has made me appreciate Australia even more, and the professionalism of the doctors, nurses, surgeons and all the associated health care professionals have been incredible.

Hopefully there will be a chance for me to repay some of this debt back to the community once Jen fully recovers from this ordeal.

I hope your experience has been the same Gabe, and hope your recovery has been a swift & encouraging one.


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
Joined: Sep 2012
Posts: 145
"OCF Down Under"
Senior Member (100+ posts)
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"OCF Down Under"
Senior Member (100+ posts)

Joined: Sep 2012
Posts: 145
Hi all,

Just to update everyone on the Wednesday morning clinic to discuss the PET/CT results for Jen went very well.

They have said that the areas that were lighting up were due to the area healing + inflammation rather than something suspcious, and have given us the all clear to start treatment as per schedule from next Wednesday onwards.

As per my previous posts - false / negative rates for PET/CT scans so close to Post-TX is incredibly high and the minimum time you should give yourself for this should be 3 months after the treatment / surgery has ended.

Still a fair while to go with the 33 sessions of Radiotherapy & 7 doses of Cisplatin but the doctors are confident that based on Jen's current recovery rate, she should be able to get through this ok.

Once again, thank you all for your wonderful support & insightful responses. We have made sure to keep you all in our prayers and hope that the info provided in this post will help others who are going through something similar.

Kind Regards
Jay & Jen


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
Joined: Sep 2012
Posts: 145
"OCF Down Under"
Senior Member (100+ posts)
OP Offline
"OCF Down Under"
Senior Member (100+ posts)

Joined: Sep 2012
Posts: 145
Hi All,

Very busy week with a lot of things going on in the household. We had the passing of my grandmother on Tuesday morning who went peacefully in her sleep after a 3 year struggle with Parkinson's Disease.. May she rest in peace.

On another front, my wife had her first (half) week of treatment and has now been competed 1/7 Chemo & 3/33 Rad treatments!

We were both nervous prior to starting treatment as to how bad the reaction to treatment would be but so far so good with very minimal side effects (red cheeks from the medication was about it). I guess the waiting game is always the most difficult and once you get the ball rolling, a lot of the anxiety and fear actually passes and your primary concern then becomes finishing off the treatment to the best of your ability.

Thanks very everyone's word of encouragement and advice to date and we will make sure to continue to update our progress over the next few months on Jenny's recovery to becoming cancer free!


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
Joined: Dec 2010
Posts: 5,260
Likes: 3
"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
Hi there best of luck! Things should be okay for a few weeks... Hugs and praying it goes relatively easy for you both.


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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