| | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 | I think this message has already got through, but just in case - don;t hold back on the meds.
Ive never been one for painkillers and so tried to go the minimalist approach after biopsy 2 (pre surgery). Bad decision....referred pain all through my head. Sleepless nights etc etc.
Didnt make the same mistake post-surgery and dosed up good and proper! Never quite found the ideal solution, but never skimped on amounts!
all the best
jon
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Thanks so much Jon, I am glad to hear I have a fellow surfer/skater here in the forums with me. I am pretty nervous about next week,I am just so ready to have this removed from my tongue. I am ready to start over and begin my " new normal " Life. Thank you for the words, I cut the morphine way down to just when I sleep and just vicodin during the day and lidocaine,lots of it. I want a stress-free life at the beach next Jon! : )
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 | No problems
Stay positive (as much as you can) and be confident the surgery will go smoothly!
all the best and positive vibes!
cheers
jon
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
| | | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2010 Posts: 157 | Hey Jon,
Really just been hoping to find you, I have had you in my mind this entire time because I feel a bond with you unlike others. I am a longboarder/skateboarder as well as musician. Played bass for 15 years and havent touched it in months. Right now I want to but still cannot feel my shoulder from the neck dissection. You have inspired me through most of this and I wanted to tell you that I tell myself my outcome will be the same as yours. Pathology results tomorrow, thanks for reading if you did.
Nathan
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Nathan,
The fetanyl patches work a treat. To make them stay on for 3 days i had to put "Hypafix" over it (a sticky retention sheet). If the dose doesnt reduce the pain then go up to the next one. I had so much pain that i cried like a baby for days until my chemo doc prescribed me them and i took hydromorphine for breakthrough pain. Anything to make you more comfortable then you can recover quicker. You can get over the counter stuff at the pharmacy to fight the constipation. Yeah you do end up taking a whole heap of pills, but they do help during this very uncomfortable time.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 | Hey Nathan
positive vibes coming your way mate. Hope the results are all OK...
My skating days are behind me (my body never reacted well to concrete!) but still surf. I had a whacky arm thing (damaged nerves) after my surgery so it was a couple months before i could paddle, but when i finally got out on a absolutely stunning day in late Summer it was magic.
As for music - get back on the bass man!!! Bass is king.
oh and re your shoulder, mine was pretty weird for a while too, but less noticeable cause my arm was such a mess. But still today has weird sensations, not painful, but not normal. Same with arm where they took the graft.
You get used to it and as its always getting better doesnt bother me at all anymore.
peace
jp
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | There *are* forms of the Fentanyl patch that you can cut and fold, but you must be sure you have that form. It's the older style with the drug contained as a gel or liquid of some form inside the patch that you cannot cut, but there is a type where the drug is embedded into the plastic itself that you *can* cut. The "never cut the patch" rule only applies to one form of the Fentanyl patch.
That said, I believe I had very bad reactions to the Fentanyl patch, and getting off of it, even tapering down, was hell for me.
Everyone is different. But for me, I would and will avoid opioids in the future if possible.
-Seth
47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
| | | | | Joined: Jul 2009 Posts: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | NATE - been a week or so since your last post. How's it going? how's the pain? Let us know, hey?
David 2
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
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