| Joined: Oct 2014 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2014 Posts: 41 | My dad is awaiting surgery in 2 weeks and he is in unbearable pain. Hes currently taking oxycodone liquid every 4 hours with some tylenol every 6 hours. I asked the dr what options he had to assist with pain and I was told this was the best medicine for him. He said unfortunately the cancer pain is outweighing the strength of the medicine. My dads working full time and he previously didnt want to go beyond the oxycodone so he could function and drive. It looks like its gotten to the point where he cant take it. Its hurting me to see him in constant pain day after day. What suggestions do you have for pain management? Should I be asking for something else? What has worked for you?
Caregiver to father DX:4/14 Surgery:5/14 resection, ND TX: 33 IMRT complete 9/14 Scan: 10/14, suspicious area tongue & neck. Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue. 11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND 12/14: debridement surgery, small area removed for clear margins 12/14: biopsy positive for SCC dermal metastasis 1/15: chemo: erbitux, taxol and carboplatin 3/15: 5FU, Erbitux 8/15: enrolled in PD-1 Immunotherapy 9/15: Heaven got a new angel <3
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Im so sorry your father is in so much pain. Call and ask the doc about the fentayl patch. It has worked very well for many here, including myself. This medication is a step up and step down one where it would gradually be increased or decreased. Read the directions thoroughly. The fentanyl patch is the strongest pain killer available. Never fold, bend tear, cut, rip or damage the patch. Always put it in a different place, changing it every 72 hours. I used to change mine about every 68 hours to make sure it didnt wear off. It can take up to 24 hours before it starts to work. If he could get the patch on today, about 12-16 hours later he would begin to have some relief. When wearing the patch do no long hot showers or baths as very hot water could trigger too much medication being released causing an over-dose. It also can make the patient tired and constipated. I would guess your father would start at at least 50mg, maybe even 75mg. He can also use other pain meds in case he is having breakthru pain. Liquid lortab, oxycodone or neurontin (aka gabapentin for nerve pain) all are great for breakthru pain.
Hope your father gets some relief very soon! Being in pain is never good for any patient, it just makes everything so much harder on them. The doctor should have offered fentayl, its much stronger than oxycodone. Please dont hesitate, call right away and get this prescription for your father.
Best wishes! 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 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | There are pain meds that can stop the pain. Christine mentioned fentanyl. There is morphine as well which helped me. If that did not work the patches were the next step which always seem to work once given in the correct dose.
Sometimes some doctors are not very helpful in the pain department. If one doctor is not being helpful, tap another to get what is needed to stop the pain.
Good luck
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 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Maybe see a Pain Management/Palliative Care doctor associated with your CCC. Mine was helpful. But I didn't need their service before treatment, only during, after for neuropathy, then teeth pain, brachial plexopathy. They were really helpful, kind of heavy handed in the dosage frequency for my taste, but are committed to treating your pain, and have had no problem with them writing scrips in these days of controlled substance abuse, doctor scaredness, and required tracking of these meds, even pharmacies are afraid to carry, issue them too.
Good luck.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Paul,
Good point about the heavy restrictions and controls now placed on those involved with prescribing and dispensing these very strong pain medications.
Even for clearly essential medical need, the procedures are a real burden. Triplicate hard copy scripts on special imprinted paper, pharmacies always doing double triple checks and then checking their very limited inventory.
I'm certain there is some system that monitors how many scripts each doctors prescribes of the schedule II drugs too and fearful about getting a call from the DEA.
On a personal note of the three main specialists: MO, RO, ENT, I found the RO was most free with writing the heavy hitting pain meds. I got the sense prescribing these are far more part of their daily pattern than other doctors.
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 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | In New York State, which may go nationwide, there is I-Stop, which is an Internet controlled substance registry since 2013. The doctor has to check the registry to see your history, for level II, III and IV controlled substances before issuing a written script to you. The pharmacist has to do the same, enter the information, and doctors who prescribe often are flagged, so some don't bother getting involved in this. My PCP refused to give out anything stronger than Ibuprofen 800, a joke and waste of time, when I was in real pain. I had just finished seeing all my specialists for follow-up, and of course is when issues usually arise right after that, at night, and weekends too, so I went to pain management who I knew would issue a script. Just to get Percocet, I had to go to/call 10 pharmacies to get it filled, and they look at you like it's a robbery. It's going to get worse, so find a doctor/pharmacist that will work with you, if needed now or in the future. Like you Don, my RO was helpful. My Oncologist even more so. I don't ever remember my ENT prescribing pain meds, or me asking, except after surgery upon discharge, but otherwise I usually turn down meds too often. The system doesn't apply for hospital discharges, after surgery and such. On the other hand, oxy meds are out of control here with doctors, pharmacists and others, even ice cream trucks lol, involved in theft/fraud. https://www.health.ny.gov/professionals/narcotic/prescription_monitoring/
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 | That's why I have used the same pharmacy since 1999. One of the pharmacists is still there. The other one I use is the same the cancer center/hospital system uses and they deliver 24 x 7 if I ever needed anything.
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: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Going to the same pharmacists certainly makes the survivor more comfortable not getting the evil eye and magnifying glass on the ID card but it does not reduce the burden related to managing and tracking the controlled substance.
While I was getting bottles of the stuff filled, I heard ridiculous prices each pill was worth on the street. No wonder there is so much abuse. I'm keeping all my leftover for the revolution; they ought to keep food in the pantry for awhile longer. :-|
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: Oct 2014 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Oct 2014 Posts: 41 | After a few calls to the dr, I was finally able to get dilaudid prescribed for my dad. The on call dr this morning was nice enough to try something different. I was starting to get concerned because my dad is refusing to eat due to all the pain. Hopefully this helps. My dad works at night so hoping this isnt going to cause crazy side effects. Any feedback on side effects for this medication?
Caregiver to father DX:4/14 Surgery:5/14 resection, ND TX: 33 IMRT complete 9/14 Scan: 10/14, suspicious area tongue & neck. Biopsy confirmed SCC BOT 2nd Primary, right lateral tongue. 11/14: surgery partial glossectomy, pec flap, trach, NG tube, ND 12/14: debridement surgery, small area removed for clear margins 12/14: biopsy positive for SCC dermal metastasis 1/15: chemo: erbitux, taxol and carboplatin 3/15: 5FU, Erbitux 8/15: enrolled in PD-1 Immunotherapy 9/15: Heaven got a new angel <3
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Sorry, no experience with this one. Of course, side effects are impacted by dosage which is a balancing act between pain relief and increased side effects.
If there is still much pain keep pressing for adjustments. Paul; mentioned earlier the pain management unit that specializes in managing pain. Ask around if you have access to this group as they are most capable of dealing with pain issues.
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 | | |
Forums23 Topics18,166 Posts196,921 Members13,103 | Most Online458 Jan 16th, 2020 | | | |