| | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) |  "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hope it is all going well today Wendy. My fingers will be crossed for the ALL CLEAR.
Gabriele xxx
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: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 8 | Best wishes with the appointment today! Prayers that all is ok!!!
ChristineSCC 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  | | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Sorry I'm a bit late with the update. It was a long day yesterday so was a bit tired last night. All went well though. They took a biopsy from his jaw bone, gum, tongue and throat. We should get the results next Tuesday so it's now time for the dreaded wait. I do hate this part. We are so close to the 2 year anniversary. It's on the 28th of this month. So close. Fingers crossed the biopsy comes back clear. The doctor's said Steve's jaw on the right hand side was so bad it disintegrated when they tried to take a biopsy there. The loose tooth also fell out at the same time as it was in the same region. The jaw on the left side is showing exposed bone but seems to be in a lot better condition than on the right side. So he has had quite a bit taken from the jaw on the right hand side, not by choice.
Steve had a fair bit of pain last night but seems good today so that's a blessing. So now we wait. Lets hope all goes well and we can get on with HBO.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Wendy,
I don't know if you like mystery novels or science fiction, but Connie Willis' novels Blackout and All Clear got me through several days of waiting - it is a combination of both genres. Prayers and best wishes to you both.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Thanks for the suggestions Maria. I'm studying at the moment and have an essay due in 2 weeks so that is helping to take my minds off things. I have a huge amount of reading to do. Luckily I enjoy it and find it does really help to get me through these waiting days. I'll definitely add your books to the list. I'm an avid reader so am always open to suggestions. I do enough reading for both of us in this house Thanks for your prayers and best wishes too. We need as many of these as we can get. I'm praying for the all clear again that's for sure.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | No news today. Steve's biopsy results aren't back yet. They did say last week they might not be back in time for todays appointment and that appears to be the case. So we have rescheduled until next Tuesday 30th of August. Will update you when we hear something.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Arrgh - another whole week to wait. Maybe the weather is nice enough where you are to get out for a nice scroll (or a movie if it is raining). Best wishes from the other side of the globe.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | How frustrating for you both having to wait for another week.
I hope the time goes quickly for you. Has Steve been fishing up there yet?
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: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | Thanks Maria and Gabe. Your not wrong about the frustration. We were actually in the waiting room of the doctor's office yesterday when they cancelled. Incredibly frustrating and another week of what ifs.
Maria the weather here is perfect. I live in North Queensland and it's very balmy and tropical. And it's winter lol. Beautiful place to be. If we have to wait, here is the place to be waiting. Gabe, no fishing just yet. Still settling in and catching up with all our old favourite places. It's nice to be back. I'm sure the fishing will come with time though. Will have to do it soon before the weather gets too hot. I'll keep you all updated on how we go. I will be very glad when the wait is over. I don't need to tell you all how painful it is.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Love to you both xoxox
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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