| | 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 | Steve, there are 12.5mg fentanyl patches for when you are ready to step down off that.
Good luck!
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: Apr 2013 Posts: 21 Member | | Member
Joined: Apr 2013 Posts: 21 | Thanks ChristineB I am really looking forward to no pain meds!
T1 N2b M0 IVa HPV+ right tonsil 58 non smoker
Noticed enlarged lymph node right side 2-2013
CT scan 2-18-2013, FNA 2-21-2013 Neg,
Excised 1 node and bio tonsil SCC 3-19-2013.
MD Anderson 4-1-2013
8 teeth removed 4-12-2013
Start treat 4-29-2013
66 GY IMRT
Comp treat 6-7-2013
8-15-2013 NED
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Hi Steve,
I never went to the patches. I moved up to time released oxycontin but went off them about a month ago and have been on oxycodone. I have Vicodin (hydrocodone) as well but only take one when I'm really hurting. For some reason, they just seem to work better.
Back in the day when I was on the road as a full time musician, I was a party animal. I admit I enjoy a good buzz even to this day but never was I addicted to drugs. I told my docs "Just give me the good stuff and I'll be fine" ~lol~ Well they did! The difference is there's no "buzz" involved, just relief. Even with the herbal variety it was way different than my partying days. It took the edge off the pain, really helped with nausea and was an appetite enhancer.
Now?... sheesh... I'm just tired of being medicated.
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Mr T,
The leg uneasiness you speak of is opiate withdrawal. Valium can help take the edge off but it could last up to a week or two. I weaned off 2-75 mg fentanyl patches in 3 weeks. I just keep them on 5-5 days and cut back as well. I also weaned off methadone in dec/Jan and the hospice doc insisted I wouldn't live through it they even overdosed me by accident. I just stretched my 8 hr dose to 10, 12, 14, 16, etc, hrs and down 20% each 3 days. No bad effects.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Apr 2013 Posts: 92 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 92 | Maybe I am a wimp, I don't know but I am 7 weeks out and I don't see me getting off the pain meds anytime soon. I am still taking my 5 mg Oxycontin IR, I thought maybe a couple weeks ago I would try and backed off of them and everything went south. I hurt so I wasn't eating and drinking enough, lost more weight, swallowing became more of an issue, weak, tired, got very depressed.
Sometimes I swear I hurt more now than I did 4 weeks ago. Every time I try to slow down with the pain meds I stop improving and I go the other direction. I don't know how long I will need these meds, sometimes I worry about addiction, but that is a bridge I will cross later when its time. I am not going to worry about it anymore.
AGE 38 10-2012 thru 3-2012 swollen lymph node,painful jaw and ear,2 antibiotics,X-ray,CAT scan,needle biopsy,scope, no answers
3-4-13 tonsillectomy and selective neck dissection, DX R tonsil SCC,METS to 1 lymph node,BOT,HPV+, stage IV
TX 35 RAD,3 chemo cisplatin/Taxol started 4-8-13
rad end 5-29-13
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Rosy,
Listen to your body. If you back off and you feel the pain and it affects your eating, sleeping, etc. Then go back to level of narcs that make you feel comfortable. Following week, try again to see if you back off what happens. It is just a process that is trial and error. Only your body can tell you when it is time. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jul 2013 Posts: 17 Member | | Member
Joined: Jul 2013 Posts: 17 | I was on morphine and oxycodone for 4 weeks after my surgery and one day I decided to quit taking it because of the side effects, sweating, chills, seeing things, etc...I would recommend slowly getting off of them and not stopping cold turkey...Wow, what they did to me when I stopped cold turkey....
Blessings...
DX-JUNE 22, 2012
STAGE..III
HNC--TONGUE
HPV--QUESTIONABLE
SURGERY...JULY 17TH, 2012
40% OF TONGUE REMOVED
FREE FLAP FROM MY LEFT FORE ARM (DIDN'T WORK)
RND
RT
XERSOTOMIA
VERY BLESSED
| | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Mar 2013 Posts: 421 Likes: 1 | Thanks Uptown,
Yeah, when I speak to my team I'll inquire about some assistance in the Rx department for weaning off. I just don't see it happening for a while. Today I left the house without taking any meds with me and I had to run back home to get some as I was beginning to really hurt. That was about 16 hours from the last dose (took a dose last night around 8pm). Any more than 12-16 hours and I really start to feel it.
"T"
57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
| | | | | 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 | Yikes, this brings back bad memories! I believe that some of us are more 'addictive' than others, so don't worry about someone who tells you they quit cold turkey. Good for them! I, however, got very very messed up on Fentanyl (probably ended up on way more than I needed due to misinterpretation of localised pin in one point of my tongue) and coming off the stuff was true hell.
In a former life I was once also addicted to Ativan. Very powerful, but in my case, very dangerous stuff. Trying to taper off of those damned little square pills, there came a point where I simply couldn't split them any smaller and had to just stop. Took me three times before I managed it, and boy did I suffer. So, if you're one who can't quit cold turkey, be sure to get the right advice and support when it comes time to get off. And, try to avoid getting too far on in the first place if you can. I'm not advocating avoiding pain medication in the least, but just be careful and informed.
-Seth
Last edited by Stily1; 08-03-2013 06:31 AM.
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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Coming off Fentanyl is NOT a single step process. You need to come off like you went up. Dropping off Fentanyl would be Oxy or Hydro at different strengths, then you can taper with stopping vs a small amount of the hydro for example.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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