| 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 | Glad to see that Steve starts his HBO on Monday. Definately crossing fingers that it does the job. Read this today from a fellow member on the Aussie Cancer Councel site ; "Had grommets installed, successfully 'dived' today! Have 30 sessions scheduled."
So I guess the tubes Christine refers to are called grommets  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: 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 ladies. Steve had his ears tested yesterday by the hbo doctor and all appears ok but not really something we will know until he starts doing his dives. They did discuss possible ear issues as a side effect of the treatment. Luckily for me I have all of you wonderful guys who I have learnt so much from that I have a head start on things when they start talking about them. Christine I'm with you on the hoping he heals and we can put this behind us. His jaw issue has been dragging on for so long now it will be very nice if it mends well. Good for him because I know the never ending round of doctor's appointments get him down (as they do for all of us). I'll keep you all posted with his progress. Gabe - now I know what grommets are  have heard of them but never knew what they were until now lol. Love to you all xxx
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 | Hi everyone just a quick update on how Steve is going. I'm glad to say he is about to start week 5 of HBO and is going really well with it. In the beginning he had some anxious moments where I thought he'd never get through it but he's gone great and has not missed a single dive. He is booked in for surgery on his jaw this coming friday the 28th. They are going to remove the dead bone and if need be put a metal plate in to help support his jaw. Then they are putting him back to hbo the next day for a further 2 weeks. Fingers crossed this works and we can continue to move forward. I'll keep everyone posted on his progress as soon as I can. Thinking of you all and sending all our love from sunny Australia 
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | That is awesome news Wendy!! Tell Steve we are pulling for him! I actually enjoyed HBO even though the drive to get there and back about killed me (almost literally) at the time. I made life long friends in the techs and Dr's who I still keep up with.
Keep us posted!!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Wonderful news, Wendy. Things seem to be looking up for Steve, and I pray they will continue that way. Everyone is hoping for a great success story. 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 | | | | 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 | I am so happy to see that things are going well for the both of you Wendy. Suspect Steve is a water person and therefore the dives are doable Best wishes for Steve�s surgery and recovery. Love to you both. 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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Hi Wendy Sitting here in the background, reading every word you write. Good luck to you both
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Prayers and Best Wishes (Fingers crossed). Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | 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 everyone. Your thoughts, prayers, love, hugs and support are as always welcome. We had preadmission today and I pointed out to the doctor's a hard lump in Steve's jaw that has appeared in the last 2 weeks. So off we go to xray's and opg. Looks like his jaw has indeed broken and the hbo has caused it to calcify (I think that's what they said). Anyway the doctor's are going to have a look at the results and let us know if surgery is still a go ahead for friday or if they need to reschedule to do a more difficult surgery being required. They are thinking that it is now a real possibility of putting a metal plate into his jaw as the break confirms that the jaw bone is dead completely in one section and when they remove this dead bone there will be a gap. Anyway steve doesn't seem to concerned as always. Nothing seems to phase that man. Wish I could say the same. As always I'm doing enough worrying for both of us. I'm just wondering has anyone had surgery like this before and if so what can we expect when steve comes out of surgery. I've seen things where people have drains etc but I'm not sure if this is something we will be looking at. I'm trying to prepare myself incase Steve looks a bit beat up after surgery. I'm not sure what to expect but I want to make sure he see's a bright happy face when he wakes up, not a worried shocked one. The doctor's originally advised it's just going to be an overnight stay (although this could change now) so for us it's his first major surgery requiring a night in hospital. Really not sure what to expect and don't know if anyone can help but thought it was worth a shot to ask if anyone had been through a similar experience. Also we met a man doing HBO with Steve who is an Oral cancer survivor of 30 years. He is only now showing signs of osteoradiocrenosis. The gift that keeps giving alright but how awesome is it that he's a 30 year survivor
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 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Pretty freakin awesome! he had a great team back that long ago that was really ahead of times you think? And good luck 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
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