Oh this just keeps getting better and better. We had our monthly visit with BR's pain management team today. The doctor sat in on this one, as there has been some turnover in his office staff. I thought this was going to be the standard "take the vitals and collect the scripts" visit. Instead, BR and the doctor exchanged words during which the doctor suggested BR might be better off under someone else's care. Wow. We haven't seen this guy in the flesh since April, and he completely loses it in response to BR's frustration with him not being more engaged with the case.
How was BR to know that the Which Doctor, as I will call him from now on, had finally done some research and actually had a recommendation?
He is ready to refer us to the Pain Management Center at the MD Anderson Cancer Center in Houston. In particular, he thinks that given BR's opioid tolerance, he might respond better to Prialt delivered via a pump intrathecally. Prialt is a synthetic drug modeled after the toxic venom of the cone snail.
BR's pain levels are steadily getting worse, and we are no longer finding that "sweet spot" between pain and mental fog. Toxic snail venom is starting to look pretty good.
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9 comments:
Wow 10,000 times more potent than morphine - that is quite a kick from a snail.
I hope this works out for BR.
If you ever find an answer to dealing with the Docs let me know I am to the point where I just have KRP communicate with some of them (usually "specialists") as I think they sometimes go out of their way just to confuse me and then blow me off.
Toxic snail venom? Wow it is getting stranger than Star Trek!
I wonder if we could farm these wonder gastropods and put the poppy fields of Helmond out of business.
Good luck with the new drugs.
It looks like the insurance company were less than truthful with Herrad and she should have been getting mediweed for the last two years- as it is we have been buying or own from the coffee shops. I wish they gave receipts so I could claim the costs back off the swine but as it is we are quite a bit out of pocket. It is ten Euro per gram and when the pain is bad (any day warmer than 26C for example) she can use up to three grams a day.
Oh well at least we can get it!
Hi Steve, Hi BR,
Toxic snail venom!!!???
Hope ot works.
Big hugs.
Love,
Herrad
Steve - and I thought it was weird that one of Skip's drugs is a bird poison. This is so far past that on the continuum of "weird."
As for the doc, sounds like he was willing to let his ego get in the way of his therapeutic role. Does the referral to the pain management center get you out from under the Which Doctor?
Good luck on your new quest for pain relief.The LSU Tigers play on CBS at 2:30 tomorrow.I am off work for a week. Hope your house is sparkly!!!!
If it works and has an acceptable balance of side effects to benefit, I'd be all for it. Fingers crossed that this works. What are the logistics of getting to Huston from where you are? That's got to be several hours by car, no?
Oh, and a hearty tough shit, Sherlock, to the doctor's hurt feelings.
love to you both,
Kim
I really hope that this treatment works well for BR. His frustration level is completely understandable. Sounds like a heated moment with the doctor.
Jan - Powerful, and only on the market since 2004. This one has more risk than spinal cord stimulation and the dilaudid pump combined.
Richie - To farm the snails, we'll need to preserve the coral reefs, which requires much more coordinated attention to the environment than I know my country has the political will to pay. Instead we are extracting the venom from dead snails, identifying the toxins, and making synthetic versions. Keeps the drug companies in business, and we don't have to preserve anything.
Makes me want to go to Jamaica and lick a frog.
Herrad - I hope your recent and delightful visitors have helped raise your spirits a bit. To combat increased spasticity in BR's legs, we have increased his Baclofen dosage, which has made his arms much more weak. Still, he swings from the trapeze like a circus star.
Cranky - To be honest, I thought we were done with the Which Doctor. In my plan, we would continue to collect our monthly scripts from his office staff until BR was placed in hospice. We are still try to comprehend the risks and benefits of changing that plan.
Dede - Tigers won, but wasn't that a nail-biter?
Kim - Houston is a four drive. It should be no more difficult than our vacation in New Orleans last April. We'll just have to make sure we get everything line up and accomplished in a week or so. Since I've been working out of the house, I should be able to get a minimal amount of work done from the road as well.
But that all may be moot anyway. BR is tired of one failed experiment after another, and is leaning towards declining the referral.
Lisa - The doctors are supposed to be the calm, rational ones. Turns out they have the same hair trigger for disrespect as an inner city gang member.
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