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#104908 10-09-2009 01:17 AM
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MargieL Offline OP
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I justdo not understand why I am feeling so bad...there is so much pain i am now on fentanyl patches 25mg plus Ordine for breakthrough and other stuff. I lie to my doctor and tell him that the patches help when they dont. I have sunk so low. I dont know what to do. I am two and a half years post treatment. Surely it should be better by now. I want to scream....my teeth have started falling out and they are so painful. There is so much other personal stuff going on. I want it to be over. I am so tired of the whole thing


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.
MargieL #104910 10-09-2009 04:00 AM
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Oh Margie, I wish I knew the words to say to make you feel better. Hang in there. There are people here on this site that will help, of that I'm sure. One thing I can say is don't lie to your doctor about the pain. If the pain is there then you need something to help. From a carer's point of view the pain is one of the worst things to watch. Once there is relief from the pain things seem much easier to bear. Just don't give up. Speak to your doctor about stronger pain meds please.

Wendy


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.
WendyG #104917 10-09-2009 06:02 AM
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Margel,

I never was on the patch but from what I've read 25mg is about the lowest they ever start someone on. Also NEVER lie to your doctor during this ordeal. How in the world can he begin to Tx your symptoms if you aren't truthful to him.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #104925 10-09-2009 07:12 AM
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Margel

time to step up to the 50mcg with the option of the 75mcg patches, As David noted, 25mcg are just "trainer patches" for severe pain. Confession is good for the soul, so contact your Doctor asap and tell him what is really happening and ask for an upgrade. Read some of EricS's posts about heavy duty patches and pain pills and you will see you are relatively speaking just taking aspirin for a broken bone.
good luck
charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #104937 10-09-2009 12:11 PM
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I believe we have had people at the 200 level and I believe I read that they go as high as 500.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #104939 10-09-2009 12:34 PM
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They sure do !!!


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
Cookey #104950 10-09-2009 04:13 PM
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Margie, It's time to make the sads take a stroll away from you. Tell you Dr about the pain and your frustration. You might need some meds for depression as well as stronger patches or pills. My teeth broke off and fell out, and yes I miss them, But you and I are both alive and can tell about the pain and frustrations it causes. I was given 25 Fentanyl Patches too and they are in my dresser drawer because they were just too weak to do any good. Ask your Dr for some stron Magic mouth Wash . It acts on the pain rather quickly but doesn't last that long. Time for a pill to take hold tho. Good luck and cheer up for you and your family plus your family here. I do understand where you are coming from.


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
EzJim #104953 10-09-2009 04:32 PM
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Margie,

You should be honest with your doctors. Unless you tell them what is going on, how would you expect them to know what you are going through?

What action plan do you have to fix your teeth? A few months ago you were asking about HBO. Did you look into the HBO treatments??

Karen

Last edited by Karen Rose; 10-09-2009 06:52 PM. Reason: typo

46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
Karen Rose #104965 10-09-2009 10:38 PM
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MargieL Offline OP
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Karen The docs are still working on what to do re my teeth, the latest idea is that they will remove them one at a time when they get too loose, so no HBO. They will not take all the teeth out because they are concerned that my jaw and chin may get serious infection and that would require surgery again. So, I am waiting to hear when I go in to have the first of my teeth removed.

Thank you all for your kind words.

Margie


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.
MargieL #104967 10-09-2009 11:06 PM
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Margie

That is ashame that they are not recommending HBO. HBO Treatments before any dental work to remove teeth and/or after any dental work, especially when radiotherapy has been involved, helps to heal the wound site and helps prevent infections.

Have you been to another specialist for a second opinion? It is just that if you are in so much pain, as you were back in May - 5 months ago, it might be worth checking that out and getting some advice from someone else.

I had a problem with one of mine aching after radiotherapy, and they immediately got an xray and removed it then and there on the spot.

Karen




Last edited by Karen Rose; 10-10-2009 12:21 AM.

46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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