| Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | Nah, it's just that we like typing!
d2
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | Hi Dave, I've been a carer to my hubby who was diagnosed 2 years ago. He has just had a clear CT & PET scan, something that wasn't expected. Hopefully he'll be around for a long time to come. You are really brave, and your mum sounds like a godsend. I am in Melbourne...yep, another Aussie, but with many friends via FB on the other side of the world. Don't know what I would do without the support on this site, and FB - most of my friends on FB are from OCF, and are all loves of my life. To you and @KLO, how do we find you on FB?
Hope you are still doing ok, lots of love being sent your way.
Jeanna
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.
| | | | 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 | If anyone wants to join the OCF facebook list. Please write a message on that thread found under the "Friends" tab. Include both your name on here and your real name. If you have a link to make it easier to find you, please add that too and I will update the list. Only upon request will I add anyone to this list. It is very nice to be able to get to know OCF members in other ways than just as oral cancer patients and their caregivers. This site is still the very best place for all info about oral cancer. Facebook in no way takes the place of this forum. 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 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | Thanks Christine..agreed, but FB is a good place for a laugh, hug & kiss.....don't you think?
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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Have you had biopsies to either confirm or deny the Cancer. I might have missed that part?
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Feb 2011 Posts: 82 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Feb 2011 Posts: 82 | hey sorry i've been busy and not made it here to reply the past few days. @ David2- well i can touch type reasonably well. it's no more outrageous than the name as a cause haha  @ Jeanna F- Congratulations on the clear scan for your partner. must have been a great moment for you guys ! i'm doing very well at the moment, thanks  @ChristineB- i'll have a look for that list to add my name for the fb @ EzJim- i'm not 100% sure on what you mean. do you mean biopsies of the glands taken during surgery? if so, yes they were checked as far as i know and i think only about 3 were cancerous, and a heap were taken around them that were ok.. i've had a biopsy on a neck node on my right during treatment which was cancer.. but have since been given a clear scan from an ultrasound. nothing unusual showed up which my radiation doctor expected, which is a good sign. i'm booked for a PET to be doubly sure in the month of May i think. hope this helps, i've gotta go again now, to the gym actually. wish me luck haha  cheers, dave @
21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
| | | | Joined: Apr 2003 Posts: 122 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Apr 2003 Posts: 122 | Welcome, Dave! I think you'll-as I have and continue to-find not only a wealth of really useful info but really GREAT PEOPLE on this site. You've been through a lot, my friend and it shames me when I come here and read people's experiences to think that I actually occasionally feel sorry for myself! Hang in there, dude! We're all rooting for ya! Gordon
SCC right tonsil Dx 14 Feb 03 No surg till Apr 03 Lip resection Sep 05 "frankenface" Recurr Apr 10 2/3 tongue removed Jun 10 SPEECH/SWALLOW/DROOL challenges FUN! Dec 10 Tumor @ nodes/larynx/cart artery growing Erbitux Mar 11 Hyoid bone regrows!? recur Dec 12 begin taxo chemo 10yrs-still kickin!
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | hey can i ask you a question... how many nodes did you have involved on your left and right side?
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: Feb 2011 Posts: 82 "OCF Down Under" Supporting Member (50+ posts) | OP "OCF Down Under" Supporting Member (50+ posts) Joined: Feb 2011 Posts: 82 | @gpk. cheers mate !
@Cheryld hey Cheryld. left side i think it was 3, which were taken in the surgery. 1-2 weeks into treatment i discovered a lump on my right side, and had higher doses of radiation on that part of my neck to 'kill' that cancer. hope that helps, cheers
21 @ diagnosis. Tongue cancer(SCC) non smoker,HPV negative. 11 hour Surgery (30+ glands removed-left side neck dissection, 'jaw split' for 'access'-left side tongue dissection, graft & artery from left thigh for re-construction of tongue.44 rad t'ments.4x cisplatin.no peg.Clear PET scan 12/5/2011!
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | It does... Thanks I had one on my left and that and 39 more were taken, in surgery but a very small node 3mm highlighted on my right in my last CT - they are adding radiation to that side just to be sure they get it they are not sure it's cancerous said it could be any number of things as they haven't done a biopsy. I am going to ask them about making sure it's strong enough. Thanks so much - hope all is well.
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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