| | 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 | 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.
| | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | 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.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | 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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Margel
time to step up to the 50mcg with the option of the 75mcg patches, As David noted, 25mcg are just "trainer patches" for severe pain. Confession is good for the soul, so contact your Doctor asap and tell him what is really happening and ask for an upgrade. Read some of EricS's posts about heavy duty patches and pain pills and you will see you are relatively speaking just taking aspirin for a broken bone.
good luck
charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I believe we have had people at the 200 level and I believe I read that they go as high as 500.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 |
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | 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
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | 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
| | | | | 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 | 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.
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | 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
| | | | | Joined: Nov 2006 Posts: 93 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2006 Posts: 93 | Margie,
Any news.... thinking about you.
Margaret
caregiver to husband
right tonsil stage 3
35 IMRT TX completed 1/5/2007
PET Scan clear 3/07
biopsy 9/07 clear
1st yr PET scan 12/18/07 clear
| | | | | 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 | Margie
Im so sorry you are still having trouble so long after tx. Im very familiar with loose teeth and HBO. Please send me a PM if you have questions. I had all my teeth removed due to radiation damage they were all very loose.
As far as you patch goes, its very low. Im on 50mg right now with oxycodone and hydrocodone for any breakthru pain. I forgot to put a new patch on one day and then stupidly thought I didnt need it. Wow was I wrong, you would be surprised at how much pain the 25 works on. Please be honest with your doc and let him know you werent truthful before. He can only help you if he knows the whole situation.
Saying prayers that better days are in the very near future for you.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Margie,
Fentanyl is a strong pain med, however your dosage is low. After tx I was on oxy hci, then quit. After my surgery I was dialed up as high as 200mcg/hr with up to 60mg/hr of oxycodone for breakthrough. I didn't understand why I needed so high a med after I was technically cancer free.
Be real with your dr, get help with the pain but more importantly get that spirit up girl! You can do handle this, work with your medical professional to treat and get to the bottom of the pain issue. Most importantly get your mind right.
You are in a fight here woman, and in a fight sometimes it's your will and spirit that see you through it. Keep the faith as my friend Charm would say...and if you need chemical assistance to keep you in the fight, use whatever means possible to win...this fight doesn't have any rules and your opponent certainly doesn't fight fair.
Good luck my dear
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | I weigh 115 now and was down to 98 lbs during treatment and went up to 100 patches. I think even 150. Consult your dr but its important to get your pain under control- Its bad to be in state of stress like that. You need to reserve your energies for healing.
K
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 396 | please tell ur dr about your pain, if he doesnt know-he cant help you. please dont suffer. its unnecessary.
Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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