I am on my 2nd reccurence of oral cancer. I am in a great deal of pain all of the time. I have a tumor on my jaw, open wound on my neck that leads into my mouth so I have not drank anything in 6 months, and I finished radiation in mid june. The doctors have me on oxycodone 30mg every 4 hours, methadone 15mg, and gabapentin. I still seem to be in pain most the time, its only about a 4 tho. My major problem is I am going to have to stop taking the methadone. This medicine is making me fall asleep even while I am standing. I went to the restroom went to wash my hands and I fell asleep standing there. I then fell, I was lucky because I fell right in between the toilet and the bathtub. So I just missed slamming my head into anything. I only hit my arms. Anyone else have this problem with these medications? And does anyone know some pain medications that may help me? I just want to be out of pain, even if its not all the way I want to be a lil more comfortable. I have also tried the fentanyl patch, that makes me sick and I can not take oxycotin because you can not crush it and put it down a gtube. Any suggestions please.

Samantha,
I am deeply sorry to hear of your recurrance and pain management issues. My suggestion would be to immediately discuss these issues with your MO (they seem to be the best at pain management) or, if your hospital has a pain management specialist, make an appointment with them.

Most pain meds, except Fentanyl, are also available in liquid form.

Most pain meds require an adjustment period while your brain chemistry adjusts. It sounds like you should have some in-home assistance during this period.

I was on Fentanyl, 72 hr., time release patches. They typically start at 25 mcg and slowly advance them to as high as 500 mcg. It's your best shot (it is the strongest pain med available). You may be able to also get an antinausea med to help with that issue, Ativan, Compazine, Zofran, etc.

It is also VITAL to stay well hydrated and watch for constipation issues (which all narcotics, synthetic or otherwise will cause). Constipation can cause nausea as well when homeostatis stops. This can occur rather quickly after pain management is initiated, sometimes within days.

I would also recommend getting your blood pressure checked to insure that your respiratory system is not overly depressed.

You may also wish to consider a portable commode by your bed (and waterless hand cleaner). They also make chairs for the shower so you can sit.

You were lucky this time.

Pain management is a basic patient right - demand it.

Oops I wrote Radiation ended in mid June I meant to write mid January. I seem to be doing that sort of thing a lot. I am on so many meds right now.

Keep a written log of your meds - you don't want to OD.

Keeping a log of meds is SO important! My son had insisted he could keep his own log in his head but when he starting sleeping so much and sleeping past the time for his meds, I really worried about him especially when he couldn't remember when he had taken them. I finally made a spreadsheet with the names of the meds, how often to be taken, time of last med taken and how much, as well names of the doctors prescribing them with phone numbers of the doctors and phone numbers of Drugstore where they came from. I taped a copy to his refrigerator, laid a copy by his bed and kept a copy for me and I insisted he had to record the med on the spreadsheet with time taken, noted so that when I wasn't there, I would know what happened when I got back.

You should also keep a log, or journal, of daily calorie intake, water and "other" bodily functions. Record your temperature every morning.

I received liquid oxycontin when I was recovering and put it in my feed tube. You might check on that.

Its so sad... I am very sad to heard about you... I think you should consult with pain management specialist.... because i am not able to recognize your pain. So don't waste time..Just contact to your doctor follow their suggestion....

All robins pain meds were in liquid form and went down his feeding tube.i know the drugs available in america are slightly different but Rob had 300 mcg fentanyl plus liquid morphine for breakthrough pain,they added ibuprofen for inflammation,paracetamol ,amytriptaline for nerve pain,my point being that every different type of pain requires a different type of medication so one broad spectrum analgesic may not do the job.You should not have to suffer any pain and at the very least you could ask for a pump syringe to give you continuos relief,

Is anyone in communication with Samantha? I am concerned that she has not posted back recently.

Brian,
Samantha posted on FB around 6 hours ago and I see you are a friend so you should be able to read what she wrote.
Send me as message if you cannot see it.
Cheers
Gabriele

Brian, here is Samantha's FB post....

I will be starting back up next week, hopefully on the 28th. I will be doing 2 to 3 drugs. The 3rd drug depends on if another doctor will sign off on it. It has only been used a few times for head and neck cancer. I will do anything and everything. This has to be gone. Period. I will be doing the 5fu again to, which stays connected to me for 4 days straight.

Thanks guys for the update. I'm only on FB occasionally, between OCF's emails, the Forum, seeking out news stories, and reading the current research, (and that's just after work and the weekends�) something has to give. FB is at the bottom of the I've got to keep up with it stack.

She's doing okay - they were treating her for several things - she's been getting chemo to prepare her for up coming radiation. She was afraid the cancer had spead further a few weeks ago but after a ct she was told it was an infection... She's had a lot of problems with infections and her grafts. They had a local fundraiser for her this past weekend - to help her our financially. She has photos up on her Facebook and looks okay for all she's been through though she's very swollen of course - my prayers are with her she's a brave girl.

Sorry typed the above before I realized Christine had replied... Duh!!