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Been oh HIGH dose Fentanyl for FIVE years

I have a rare tumor/cancer for the last 10 years, I also have an oncologist at MD Anderson in Houston, Texas.  I have been on fentanyl patch and the oral "lolly pop" the same quantity the last four years. I have to say it has controlled my pain better than any other medications, tens units, patches with medication.  I have easily seen 5 to 6 pain doctors with all the moves to different states due to my husbands jobs. Long story short: Recently my oncologist of a year at the same clinic that put me on the fentanyl 5 years ago has decided she wants me to go off fentanyl and take methadone instead. I will have to be hospitalized and go through detox for a week, but I havent heard much in the way of assurance that methadone will be able to control the pain I will have again if it doesnt work.  I have asked what my options will be and I am told "she doesnt have time to teach me". I am scared and from her recent actions I have little trust in her to do what is best for me as her patient. I wish I knew before I was prescribed this drug I would be in this nightmare situation. I would HAVE NEVER started taking it!!!
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Avatar universal
How high of a dose? I've been on Fentany, too
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Avatar universal
1200mcg 180qty a month
800mcg 180qty a month
2-100mcg patches every 72 hours

WAY TOO MUCH!!!
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Avatar universal
If it were me, I'd get a second opinion.  Pronto.  You don't have to put up with that kind of high handed bull.
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Avatar universal
I agree you should try to get other opinions on this.  I've never had the Fentanyl lollipops but I was on (what I think) was a high dose on the patch.  I came off that gradually (on my own) and it wasn't too bad.  I do know Fentanyl can be hard to come off CT but I would think in your situation in wouldn't be hard to taper you down.

Why are they all of a sudden in such a hurry to switch to something else?

Please do your research on methadone.  It was suggested to me for pain control, and after all I read here and elsewhere, I decided it wasn't for me.  It is a very difficult drug to come off.  Even though my pain is not really well-managed, I'd rather have some pain than worry about methadone withdrawal.  What if you decided you wanted to come off?  The withdrawals would be much worse than Fentanyl withdrawals.  What if they decided to put you on something other than the methadone?  How would they get you off that.

I will say there are some people who say methadone does work for them for pain.  And if it helps them, maybe it's right for them.

It's also possible that your pain is increased by the medications you're taking.  It does happen in some people that you keep increasing the pain meds and it's not really helping.  I can't think of the exact name of it ... something like narcotic-induces hyperalgesia, maybe.

Have you ever thought of tapering down off some of your medications and try to get a better idea of where your true pain really is?  When you do this, initially your pain can increase, but tons of people have said it settles down after a short while.  I'm tapering down myself because I'm wondering where my true pain is.

I also want to suggest the pain management board for you.  It's for people with chronic pain, and you may get some suggestions or at least be able to vent over there.  Chronic pain is really hard to live with, and no one should have to live a life where there pain is so bad they can't do anything.  But sometimes doctors just keep increasing pain meds instead of trying to manage it in other ways.

Again, whatever you do, please do your research before starting the methadone.  You should always know the pros and cons of any medication before starting them.  And if your doctor doesn't have the time to explain things to you, you definitely need to find a new one.  Remember, he's working for you.
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