| 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 wanted to let you know that we met our new team today. We've been back in our home town for 1 week and already we have met them. They appear to be great. They checked Steve over, checked all of his scans out and are fully up to date on his medical history since first diagnosed in 2009. They said today that for all intensive purposes they believe that because he is 2 years out of treatment without a reoccurence that he is considered cured. (Although we still have the 5 year all clear date) That's not to say it will never come back in another area and they said there is more chance of him dealing with this again because of his history but they were really happy with the fact that he was 2 years out and cancer free. Got to say I love the word Cure. Never, ever thought we would hear that word. In fact we were told early on that they didn't think they could cure him as the cancer was too extensive. So as you can all imagine we are very happy tonight and finally feel like life is starting to turn around for us.
As for his jaw and the osteocronsis, they have booked him in for a biopsy next Tuesday the 16th. They don't believe there is any cancer there and they are pretty confident that the damage to his jaw bone is radiation damage but they want to rule out any possible cancer before we begin HBO. So they will be taking some of the bone, some of his gum and also biopsying inside his throat as a precaution. They seem pretty confident that all will come back clear. The biopsy will also give them an idea of just how agressive they can be with Steve's treatment to his jaw bone. So things are finally moving forward with relation to his jaw. We spent over a year on a waiting list at the other hospital and here it's been 1 week and it's all moving ahead. They said they will remove as much damaged bone as possible to get to bleeding bone and then they will repair his gum and start HBO.
And to top today off we found out that our furniture arrives tomorrow so no more living in an empty house YIPPEE.
I found out also that there is a support group starting for carer's of head and neck patients so I'm hoping I can be involved in that in some way and hopefully be able to help some people along the way. Plus refer them all here lol. Thinking of you all often. Take care my OCF family.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 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.
| | | | 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 | What a good move you have made!! So happy you have finally made it home and treatment seems to be both doable and, dare I say, superior to where you have been. That and sunshine and warmth too!! And of course,the very good news that Steve is CURED by their definition. How good is that! Hope to making the same sort of post in 12 months time myself.
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: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Wendy, so glad to read your good news. Everything has turned completely around with the big move. Seems like it was a very good choice to return home.
Im excited to hear about the new group that is starting. Im sure you will be a huge help to the other caregivers.
I like how the new team is on the ball and being cautious. Please keep us posted with all the upcoming procedures. 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: 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 wonderful Wendy that everything is falling in to place for you and Steve. At the moment I can just picture you setting up your furniture that must have just arrived now Looks like its full steam ahead now to get Steve�s jaw treated. Fingers closed for a good result from the biopsy. Love and hugs 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | So glad you're home and hubby is "cured" hugs to you both - and enjoy your new furniture! )
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: 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. Life has certainly taken a turn for the better since the big move. We even found out today that Townsville will have it's own PET scan facilities by November. Currently Qld health fly you to Brisbane which is a 1 and a half hour flight. We did this when Steve was first diagnosed so know how difficult and long a day it is when you have to do this so knowing the facilities are going to be here soon is fantastic. So we now have HBO and soon to be a PET scanner all within a 10 minute drive from our home I'll be sure to keep you all updated on how we go. Get through next Tuesday first and then see where we go from there but so far a plan has been made and we are very happy with the team. And yes, furniture arrived all ok and we get to sleep in our own bed tonight for the first time in weeks. Now that will be bliss
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 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.
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Hi Wendy: Hope everything goes great for you and Steve. I bet you two go to bed at 6 p.m. tonight, just to enjoy sleeping in your own bed again . That will be wonderful. 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: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Congrats and hope all continues well for you both. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Sounds like the move was a good one! Congratulations and here's to plenty more all clears:) Jayne x
Scc nasal cavity /hard palate Surgery removal of septum and roof of mouth 15/3/11 cl margins Rt and cisplatin 6 weeks starting 24/5/11 Obturator
Age 45
| | | | 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. Big day tomorrow. Have to be at the hospital at 7am for Steve's biopsy. Hopefully the day will go quick for us both and he won't be in too much pain afterwards. They are taking a bit of bone from his jaw and having a look at his throat (possible biopsy there if they see anything suspicious). Fingers crossed it will all go well and we get the all clear again. Then we can move on to HBO. I will keep you all updated on how he goes.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 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.
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