Sorry for earlier post-not sure what happened

Last Feb I posted here about the extreme frustration caused by the incompetance of my Doctor's staff, and for most of the rest of the year (EASILY the worst of my life) we managed to get through it. Now, however, the incompetance has moved UP a level, and one of the team nurses and a pharmacist, that I met with at least twice (WITH my sister present, thanks to your advice)
We hammered out a treatment plan that includes Oxaliplatin IV, then 2 weeks of Xeloda orally twice day. The side effects are quite severe; the worst being the neuropathy in my hands and feet when cold. (did someone just grind out a cigarrette on my FOOT??!!) With 2 bouts of the coldest weather to hit Atlanta in 100 years timed perfecrly to give me the FULL range of the effects, I have NOT been the world's HAPPIEST camper! The tumor in my neck and upper left shoulder is still growing, but MUCH more slowly...but the dang things hurt like the DEVIL! (intermittantly) They had agreed to give me 6 10mg percocet a day to help deal with it. This was decided at the end of Dec and all went well for Jan. Come Feb, however, I was astonished to be given a prescription of 50 5mg percocets, which, at this point, are like tylenol to me. After some stomping and growling (AND kissy-face stuff, too!) I was given a prescription for 90 10mg percs that I took directly to the pharmacy; only to discover that they had called the pharmacy and ordered them to NOT fill that script! When I asked why, I was given no sufficient reason. I have placed repeated calls and NEITHER the NURSE NOR THE PHARMACIST WILL RETURN MY CALLS! This all happened on-you guessed it-the ANNIVERSARY of my diagnosis, 14 Feb. (One guess which is my LEAST favorite holiday!!) ;-)
I WAS able to get a script last week for 50 10mg oxycontin. So I'm thinking they probably want to change my pain med to that...? That would be fine, but STILL no one who can answer me authoritatively has returned my calls.
WHY ON EARTH should I have to play mind-reading games with this staff of so-called PROFESSIONALS at EMORY UNIVERSITY'S WINSHIP CANCER CENTER???!!!
I am absolutely DUMBFOUNDED! I CAN understand their concern for prescribing such a commonly abused drug, but why would this-or ANY- decision be made without MY input? I haven't EVER abused drugs, well, PILLS, anyhow...my drugs of choice back in the bad-ol'days of my teens, were always SMOKED. (gee, could THAT have anything to do with...NAAAA!!!)

I am scheduled to see the doc on Fri the 22nd before my infusion, and certainly don't want to start pointing fingers and raising my voice (as well as a little HELL!), but I want to clearly and fully explain my hurt, anger fear, and downright FRUSTRATION that I have experienced from these people since I was pronounced "terminal" My sister (who will NOT be present this week; my Dad got voted "most likely") thinks I get too angry too quickly and suggests a meek, mild approach. Actually, while I don';t plan on getting physical or anything, I feel that this anger is well-warrented and just MIGHT be playing a role in the fact that I keep on beating the odds! It may be my time soon, and if that is so, then so be it, but, DAMMIT! I'm NOT going to be experiencing bouts of EXCRUCIATING pain while waiting for that fateful day!

Am I wrong? Probably. Please post if you've had similar expiences or advice (good OR bad!) on how to best deal with this incredibly vexing recurring problem.

Sounds to me like this is all due to not your specific situation but because of the drugs themselves. Doctors seems to be making a shift to have patients who rely on strong pain meds see a pain management doctor to handle their pain meds. This would actually benefit you greatly so I think its a very good idea for you to try. There are many things available and the pain specialist will try a few different things and get something that actually works for you. Im so sorry you are so frustrated by what your nurse and pharmacist have been doing. I suggest asking to get sent to a pain management specialist. Its pretty obvious that your current physician prefers not to handle your pain meds.

Good luck!!!

I agree with Christine, its the pills themselves. There have been alot of new rules and regulations put on these pain pills, making it very difficult for those on long term pain management. Its not fair, but sadly to many people abused the system for these drugs and everyone who actually needs them has to pay the price. I do not feel they should be changing your perscription without discussing it with you first though, so as Christine said I would recommend getting in with a pain specialist. I am sorry you are having so much trouble and understand your frustration. I wish you luck.

Thanks, guys for your support by letting me vent my childish (but, OH so satisfying!) hissie fit all over ya! OPO
The trut of the matter is, however, that this doctor )(I've hadiforhasd fo 1 1/ is BY FAR the most distant , reseved almost secretive
I am (finally!) scheduled to see a pain specialist on Mon 10 Mar, Will report how THAT goes...the last one I saw a few years back was so set on seeing everyone who came her way was a big-time druggie just in it for the "high" that we just didn't frunction well together. I am NOT going to be made to feel like a criminal and/or drug addict just because I have a real need for pain relief...and HELLm woman, you call THAT a HIGH?

Send some good energy my way that this is truly a helpful, if not "enlightened" doctor that is well-versed in the entire field of pain relief; pills, massage, stretching

Gordon!
Where you been dude? Thanks for checking in. No matter what is crap about cancer, pain is the top of the list for side effects and there is NO reason why you should not have this addressed as fully as possible. My journey down cancer alley was short compared to many but I found as you have some doctors who write script like they are on commission and others who act like the Fed Drug Czar.

Hang in there buddy,
Don

Hi Gordon,

As rants go, I'd have to give that one a 9.5! Way to go, man, that was impressive without being excessive!

I think that we're all going to see (a lot) more of this as time goes on, mainly due, as has been suggested, the great roar on some drugs focuses more on opiate-based painkillers. This is because they are so much in favor of politicians and other high-profile celebs and so get enormous coverage in the press.

Like the others, I highly recommend seeing a pain-management specialist ASAP.

This hasn't been mentioned, so I will mention it. As one short-fused guy to another, I recommend that when you encounter a similar situation in the future, (notice I did not say "If you encounter") stop and recognize that you are about to go ballistic and take a chill-pill. (said the man better at giving advice than taking it. But I digress)

The fact is that stress is like sugar to cancer, cancer loves it. So, if you don't want to feed the beast, don't.

Good luck compadre,

Bart