| Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2013 Posts: 144 | Their is a med. out there call suboxone. it is replacement therapy for full opiates. It will stop withdrawl dead in its tracks. It is a opiate itself but does not fit completely into opiate receptors in the brain. It is used for a short time to get you off full opiates. you will taper using the suboxone slowly over the course of three to four weeks. It is much easier comeing off of suboxone due to the fact that it only fits partially into opiate receptors. This med is not know by many doctors because it is usually only prescribed by pain specialists and addiction phyc. Doctors. It worked for me.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF 3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | Joined: Apr 2013 Posts: 21 Member | Member Joined: Apr 2013 Posts: 21 | The pain I had on my tongue is why I increased to the fentanyl, at that time I wasn't thinking far enough ahead, especially about how hard it would be to come off this stuff. I have recently stopped the hydromorphone and that was not that easy. The stool softener is hard to judge. I have bounced back and forth with diarrhea. I meet with my pain med Dr. on Tuesday to start withdrawal from the patches. I will mention the suboxone also, thanks.
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 | When I met with my team on Tuesday, we spoke about the narcs. They gave me one more script for oxy and a written game plan to wean myself off. Slowly is the key and start replacing the narcs with OTC pain relief. They recommended Ibuprofen. I should be clear of the narcs by September if all goes well. So far so good.
"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: Apr 2013 Posts: 21 Member | Member Joined: Apr 2013 Posts: 21 | I am still working on reducing the pain meds. I have reduced from two 25 fentanyl patches down to one 12 patch as of today. I am also on Gabapentin. When I went from two 25's to one 25, I left the 2cd patch on for a couple of days past the 72 hours and then just pulled it off. Looking forward to being off the 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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Never mind withdrawal lol, I can't even get back on oxycodone for tooth pain, It makes me sick, dizzy, vomiting for days now. I guess I was more conditioned for the strong stuff during treatment, and probably worked up the ladder, like you have to work down.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Steve,
I was on 2-75 mg patches for weeks. I extended them to 5 days, down to 1-50 and 1-75 for 5, 2-50, 2-25, 1-25 and continued for 7 days. I had no adverse effects. With methadone the guidelines are 20% or less reduction to avoid violent withdrawal symptoms.
For adverse withdrawal benzodiazepines are sometimes given although atavan or Valium would take the edge off. Probably the most important thing to add in is increased water consumption, healthy diet and as much exercise as you can physically tolerate. Aerobic will clear the narcotics faster as well liver healthy foods. High protein, low-fat, bland vegetables.
Last edited by Uptown; 08-22-2013 04:57 PM. Reason: Neutralize Steve Jobs humor
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: 21 Member | Member Joined: Apr 2013 Posts: 21 | Paul I have wondered about needing to have pain meds in the future and if it would require more or stronger than normal. Hopefully I will not need to find out anytime soon. Hope you find relief!
Uptown, thanks for the tips. Did you use Methadone to help with withdrawal? My pain management Dr. says the next step is continue with the Gabapentin and after a week on the 12s then skip 3 days and back on a 12 and then skip again I think. I will see him again before that anyway.
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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Like coming off is to build down to lower dosage, space more often, use a lesser strength meds, non opiods on the the pain ladder, like WHO. To start again, is the same, except to work up from lower dosage, non opioid, to build up on the ladder as needed to the opioids in strength.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Methadone blocks the NMDA receptors that cause you to feel intense nerve pain. I had a few years of the worst imaginable pain like head to toe toothache. As my muscles atrophied my scapulas started moving all over. The right one came around to the rib cage and I couldn't breathe because the rib cage wouldn't expand. The methadone made it better but ischemia set in and my body started disconnecting from the brain. I started losing all feeling and was diagnosed thoracic paraplegia. The end was in sight but I guess it wasn't time. I had to wean to live.
No pain meds this year!
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: May 2013 Posts: 63 "OCF Kiwi Down Under" Supporting Member (50+ posts) | "OCF Kiwi Down Under" Supporting Member (50+ posts) Joined: May 2013 Posts: 63 | Great thread. Thanks everyone.
I was on at least 140mg morphine (70mg morning, 70mg night slow release MS ESlon (morphine) + Sevredol short release morphine for break through pain). I'd stopped the Sevredol during the day and was only on the 140mg MS. Dropped the night time one all together last Wednesday at the same time as my daughter started coming down with a temperature. Thought I'd developed the same thing, shivering & chills during the day, then that went away but they continued every night and I just started to feel very tired & old.
On Sunday I dropped the night time meds as well so was on nothing and I've just been feeling very "off" Shivering & chills every night and not sleeping.
Why did it take me this long to realise it could be withdrawal and to not even think about dropping doses slowly like I did when I was on it and slowly increasing.
I've just taken 20mg and will see if that gets rid of the chills. If not, I'll up it a bit more and do this more slowly over the next 2-3 weeks.
STUPID, STUPID, STUPID...
39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+ 28 May 13 - Pharangoscopy & tongue biopsy 29 May 13 - BOT Surgery & right ND (lvls 2-5) 31 May 13 - Hemorrhage, emergency trach, critical care BOT clr mgns, 9/67 nodes & extracapsular extension Finished chemo (cisplatin) & 30 rads
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