Appointment with PCP

[Guest guest]

I know I've been promising an update for a while and thanks to the

combination of my pain and fatigue (caused by CFIDS and/or the tumor)

I've been in bed for the past 2 days. I hope I didn't worry anyone.

I don't have the energy to talk about all of the atrocities that came

out of that " man's " mouth, but I want to update everyone and I am also

hoping that someone will pass along a few more words of wisdom to help

me get through the hell that is my life right now.

Changes:

Breakthrough medication: Still NOTHING fast acting (no

Actiq/Fentora/Lazanda/Onsolis/etc, no injectable medication, such as

fentanyl, hydromorphone, or oxymorphone)- Apparently waiting up to 2

hours for breakthrough pain relief is acceptable

Discontinued the oxycodone 30mg [2 pills every 4 hours (6x/day); 360mg/DAY]

Started Norco 10/325 2 pills FOUR times per day

1) he asked me how many breakthrough episodes I experience, I told him

6/day and he still only prescribed EIGHT PILLS PER DAY

2) Oxycodone is STRONGER than hydrocodone and he refused to prescribe

30mg hydrocodone at a time

3) On oxycodone, I could take it 6x/day, now I only get 4x/day

4) I asked for 10/300 (less APAP), he prescribed 10/325; when I

quested it, he said that there was no 10/300, when I showed him he was

wrong, he said " well, it's not that much of a difference "

Duragesic- Being reduced from 300mcg/hr down to 200mcg/hr THIS MONTH,

more next month (f|u on 4/13), if I make it that long.

I was told that unless my neurosurgeon is willing to put in writing

that my pain is from the tumor (at least in part), he will be

discontinuing my medications completely (I'll never live that long, my

vitals are already at dangerous levels).

Other Updates

The good news it that I have an appointment with my NEW medical

oncologist in about two weeks (I believe 4/5/12 2:40pm). I hope I have

the energy to make it to the appointment because I have another MRI on

4/4/12 and I have a f|u with Neurosurgery on 4/9/12. Also, the

appointment on 4/5/12 is an HOUR long intake appointment, so you

probably will not hear from me for a few days afterwards. If the

medical oncologist is convinced that my pain is caused by the cancer,

he will prescribe ORAL opioids (no pumps) (according to the office

staff). However, they also said that they do refer some patients out

to pain management for pain treatment (I'm guessing patients who need

high doses, LIKE ME).

I also called back (after leaving PCP office) the office of the pain

management office that I saw a few weeks back (the interventional pain

management office without the word " interventional " in the name)

because they never called me back. Apparently, my PCP was supposed to

call me back on their behalf, which never happened. I asked again

about the possibility of the MD there taking over my pain treatments

and/or intrathecal opioids. The lady that I talked to said that she

would speak with the doctor about both. She had no idea if he would

handle an intrathecal pump, but I know the he's never ordered one

before. She informed me that he doesn't prescribe opioids to MOST

patients (he likes to focus on injections), but in patients that fail

injections or he decides injections are not warranted (like me), he

will [on a case by case basis] make the decision to prescribe opioids.

Basically, he prescribes them once in a blue moon, but she'll ask

anyway. I haven't heard back and I know there isn't much of a chance

of him taking me on, but I need to hope for something right now.

Wells**n Interventional Pain Management hasn't called us back, which

isn't a good sign. I'm hoping that this just means that they haven't

decided yet, but I know that this really means that they decided not

to take me and don't want to admit the reason(s). We'll probably

follow-up again soon, but it is undoubtedly a waste of time.

I'm trying to look for an up-side to the torture that I am being put

through, so I am telling myself that the lower doses of opioids and

dropping of the Actiq could be just enough to tip the scales for just

one pump doctor so that they'd be willing to accept me. Again, my

better judgement tells me this is crap, but I need to believe that

this torture will not all be for nothing.

Thanks to everyone who has been there for me and continues to be here

for me as I endure this [insert synonym for torture because I'm sick

of using that word; agony, anguish, torment do not seem to cover it].

You guys have reminded me that fighting is worth it.

Steve M in PA