| | Joined: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | Hello all, I have not posted anything forn quite some time. Things havent changed 31/2 years out still lots of pain but I am living with it. Still have the peg tube and probably will forever, I have made a decision to start weaning myself off some of the drugs I am on, starting with Gaberpentin, just to see how I go. Have not discussed this with my doc yet, but will on my next visit next week.
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | | Joined: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | Sorry folks I think I have posted in the wrong spot guess I have been away too long, but I noticed that there is some talk of being able to get falsies, so far I have only lost one tooth but keep being told I cannot have the rest out and have falsies put in because of the side effects.
Last edited by ChristineB; 07-16-2011 01:27 AM.
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | I know the die effects suck - but you are still here and cancer free that is the ultimate gift... Take care and good luck with the weening.
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 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hope that your appointment is helpful. If you are on a variety of meds for pain, you might want to have them all on your own list to look at with your doctor. He/she will have all this info on your chart, of course, but if you work with your own list, it may help clarify things for both of you, and make the visit more of a collaborative effort. If your doctor is not a pain specialist, you might want to ask if a referral to a neurologist specializing in this area might be helpful.
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: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | Thanks for your replies, I have been discussing this with my GP and will discuss it further with my pain management doctor next Tuesday. I have dropped off a couple of pain meds and the pain is just about driving me nuts, so either I go back on them or we try something new.
Anyway thanks again
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | | 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 | Margie I do not think it is a good idea coming off any medications without discussing with your GP.
Best wishes for your visit today but if you feel that you are not getting the right pain treatment I would ask for a referral to a specialist. When is your next visit at the cancer clinic??
Do you need to go to Brisbane?
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: Jun 2008 Posts: 51 "OCF Down Under" Supporting Member (50+ posts) | | OP "OCF Down Under" Supporting Member (50+ posts)
Joined: Jun 2008 Posts: 51 | Hi Gabe, I saw my pain management doc yesterday and he was NOT
Happy that I had stopped the Gaberpentin, so I am back on it, oh well, I have discussed things with my local Doc, and she is happy for me to stop one narcotic at a time, or at least take fewer which is what I am doing. Will see how it goes over the next week or so.
My Pain Doc is in Brisbane, my local Doc is here in Coffs Harbour where we have moved to, I have to go back to Brisbane inn four weeks to see my Onco and my ENT. I get tired of the travelling even though it is only five hours. I apologise for having a winge but putting it down on paper oops screen seems to make me feel better about things.
SCC Base of tongue stage 4. 10 hour operation Radical neck dissection and hemiglossectomy 23/10/06 35 Rad treatments and 3 high dose Cistplatin Dec 06 - Feb 07. Ex casual smoker 6 to 8 a day - casual drinker. Very fit and diet conscious.
| | | | | 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 | Hi Margie, Never thought of it before but we call it winging and in the US they call it venting which I have gotten used to with time  Come here and winge whenever you need or want to if it helps you Margie and we will be here to listen. I am happy to see you are working with your GP now when withdrawing from medications. I hope you have a good visit when you meet up with your Oncologist and ENT in a few weeks in Brisbane. It is a long trip but can you somehow put in something nice to do say..half way there or back to make it a little more enjoyable. I know there are lots of nice places between Coffs and Brissy. Keep us posted 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: 1,409 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 Likes: 1 | Margie - winge all you want. That's what we're here for. I hope you'll get some answers when you see your other docs.
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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