I am two months post TX. I stopped taking the time released oxycodone this week. Will this make my mornings any easier? I have a rough time getting out of bed.

Hi Bill,

Are you weaning off of it? I think stopping cole turkey is hard.

Hi Bill, If you are doing OK with out pain meds. then good for you. Do not go off if you need them. Yes, it will help some.

You will be tired for a while. It takes time for our bodies to re-coop. So give it more time. I use to get up for about 15 min. then back to bed. Slowly I was able to stay up and awake for half a day. I thought that was doing really good!!

Everyone is different as they recover. You really need all the rest you can get. So hang in there. Just look for small improvements as you go.

So take care...Don't rush it... Diane

Cold turkey is hard, as this turkey found out by not tapering slowly enough...

The correct protocol is to taper off with a doctors input. Suddenly stopping narcotics can not only cause dramatic withdrawal but convulsions and death. Fatigue is another issue although the narcotics may play a small role.

I stepped down over 6 weeks. I was down to 10 Mg A.M./P.M. before stopping. I had some times in the middle where I had to step up for a day or two.

I just quit but had no side affects. Didn't touch thm for about 3 months, now if I need a perc I cut one in half. I handle it pretty good. Just be careful because my body seems to handle meds different than most do.

Wow through all of this the most I have taken is tylenol #3...and have been taking them for years for other issues...I am having trouble with pain off and on yesterday wish I had something stronger... Oh well good luck with the pain killers. I find that I have to stop to have them be effective but nothing else to take so I just bite it. Doctors in this area are not very sympathetic to the pain involved with my situation.

And they're pushing socialized medicine here - God help us! Only being given tylenol, for the procedures you have had, sounds barbaric and inhumane to me. It is a basic patient right to have your pain managed properly and the NCCN Oncology Practice Guidelines (noy that Canada is bound to follow it) has a specific section just for that. There are a lot of US citizens who want the health Canada type system here. I hope that they read your story. And you are being treated at their ONLY CCC! I get really angry when I hear of stories like yours.

Quit wishing and start demanding - don't let them get away with it!

Bill, 6 weeks is a typical phase out plan -I feel better now.

The medical profession here I think is more concerned with addiction. They figure T3's are the strongest they can give I guess I have asked for other medicine and they are telling me I should start wiening off of the t3's. I am having a great deal of pain yet behind my ears in my jaw even cheekbones hurt sometime. It almost feels like I am pulling stitches at times. I can't explain mostly when I have been up and doing things like yesterday. Did some driving and walking around at the malls by the end of the night there was no doubt in my mind I had some kick ass surgery...I am getting the pain killers from surgeon my family doctor can't see why I would even need those three+ months out of surgery. I am lucky to be able to get t3s

Oh yeah I know what I was gonna say when I started posting (Duh JIm you catchy lol) I too was feeling good not needing much pain killers two months out. Not to be negative nelly but I would keep them available cause I am feeling more now then I was at two months...But everyone is different... physio kills...

It has been brought to my attention that I intertwined socialized medicine with Dianes particular medical issues and that was an error in my judgement.

First off, although healthcare in the US is far from perfect, I am still personally opposed to socialized medicine. This is my own personal viewpoint and does not reflect the views of OCF. One only has to questionn the fact that the government can't even run a viable VA or military hospital system let alone a nationwide system of healthcare. Look at the trainwreck that Medicare is and the crisis that is looming as millions of babyboomers are just entering the system.

Please do not comment on my views in this thread - it is not my intent to start a debate on socialized medicine here. Start a new topic if you want to. I am sure that all of us would appreciate differing viewpoints on the subject. I do not want to hijack Dianes thread. As a matter of fact I'll start one in the general topics section go to:
http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=86084&#Post86084


Diane, others have pm'd me, (from Canada) that their pain was adequately managed so there may be contraindication issues with your other medical conditions that may have played a role in your physicians decision not to give you better pain relief.

Many doctors in the US also have the same viewpoint about addiction and needing pain meds so far out from Tx or surgery would be questioned here as well. Not that it would result in an automatic denial. Nerve endings can be damaged and give phantom pain for long periods of time. I would still question it however. I found that my MO was my best source for understanding my pain management issues. I got very little sympathy from the RO, H&N surgeon or even my general care PCP. Pain medications are frequently abused here as well so it is not surprising.

It's sad really that they are abused and it depends on what abused is. My mother has chronic pain and is on a patch for it. I have a lot of the same issues as my mom but do not take anything stronger. I am also concerned now more than ever that if I should not be feeling pain this far out of surgery what the heck is wrong. I have a very high pain tolerance and in my view have taken meds sparingly. Weather it is phantom pain or real I do not know and am very confused. If I am not supposed to be feeling much pain how come I am? Guess it is back to the doctors. I have sharp pains like pulling stitches and a burning feeling lower on both sides of my neck. Not like the sharp pains of nerves reconnecting. It is constant. I also have what seems to be pressure not in my ear but below both ears. Again Surgery or something else, or just my mind. This is all very confusing. I never really had any pain with the orginal cancer so nothing to compare with. Oh well as usual I will be told it is all in my head. lol...

Phantom pain is very real. The nerve endings get mangled up in surgery.

For what it's worth - I don't think it's in your head (once again I need to dsclaim that I am NOT a doctor)...

No worries just looking for backup or possible answers doc won't do follow up scans unless abnormalties. I do not know what is abnormal. I just know it isn't right to be in tears due to pain still, not all the time mostly after a full day or therapy). All the talk of managing pain and it really isn't there. Everyone's pain tolerance is different. I can handle arthritis and joint pain, back pain but when it comes to my mouth it always has felt like throbing when I have dental work done. Even when I had all my teeth out it hurt much longer than most. I guess this is not good.

Diane,
Even the NCCN guidelines, used in the US, only call for physical exams and an annual chest xray for H&N follow-up. Some people here get annual PET's, MRI's etc. but some institutions will not perform them and then there is the insurance reimbursement issue.
I managed to get annual MRI's but only had a PET scan in the beginning, as part of my initial workup.

You could invent a cure for cancer and if the insurance compaies won't reimburse it's dead in the water.

You got that right....I was under the impression that it was a part of your post treatment to have scans done. I agree that cures would not have a chance if not supported financially somewhere. I have heard of needles costing almost $1500 and they only last a month not covered by most insurances. Same as here physiotheropy and nodal massage is not covered only a couple of people do it. I am lucky to have been referred and accepted by both (with the aid of a perscription)

Dianne, get them to do a needle biopsy in the gland below your eras.. It only hurts for a little while. So the song says. LOL It quita hurting as soon as they are finished. I don't wqant to scare ya buddy. I had it and they found nothing that way , but It still hurts, especially when it's cold. Old DUH here was told to keep my ears warm and to not put anything including a wash cloth in them. Slow learner in the fast lane.

My FNA took seconds and it was similar to a shot. No additional pain what so ever.