Talk Cancer

Question:

Actually we aren’t really concerned, just kinda surprised that OHSU sounded shocked…she has built a fairly good relationship with her doc and they seem to comunicate well.   Thanks all for your input. Sue D. On Sun, 19 Aug 2001 14:43:03 -0400, "jan g" <gillett…@hotmail.com> wrote: – Hide quoted text — Show quoted text ->nowadays, I sometimes just talk to my neuro on the phone, he orders lab >tests to rule out infection, and that’s it.  but, I’ve had MS since 1978 and >have had the same doctor for the whole time.  this wasn’t always the >arrangement between us, and I still go in for major flares. >my insurance is BCBS and Medicare. >I guess whether or not you should be concerned depends……..but if your >daughter isn’t comfortable with this arrangement, I think that she should >question it. >jan g >"Davis" <pack-al…@verizon.net> wrote in message >> Hi all, I’m asking a question for my daughter.  She just started in a >> tcr peptide study at OHSU, and is seeming to have a flare up. >> Reported it to OHSU, they said she should talk with her doc >> and they would let them know the dosage of steroids they could >> use.  So she got started yesterday…three day thing no taper… >> anyway, OHSU called her today, and wanted to know what >> her doc had said…well she never sees her doc when this >> happens…she just communicates with the nurse, nurse >> talks to doc, doc talks to nurse, nurse talks to DD…OHSU >> was freaked!!!  So how many of you actually see your doc >> when you have a flareup?  Is this just a Kaiser thing? >> Should we be concerned…or is OHSU  overcompetent? >> The nurse there talked like this is a "not done" thing >> starting an MS patient on steroids without seeing them… >> anyone have any experience like this? >> Thanks, >> Sue D.

Response:

nowadays, I sometimes just talk to my neuro on the phone, he orders lab tests to rule out infection, and that’s it.  but, I’ve had MS since 1978 and have had the same doctor for the whole time.  this wasn’t always the arrangement between us, and I still go in for major flares. my insurance is BCBS and Medicare. I guess whether or not you should be concerned depends……..but if your daughter isn’t comfortable with this arrangement, I think that she should question it. jan g – Hide quoted text — Show quoted text -"Davis" <pack-al…@verizon.net> wrote in message > Hi all, I’m asking a question for my daughter.  She just started in a > tcr peptide study at OHSU, and is seeming to have a flare up. > Reported it to OHSU, they said she should talk with her doc > and they would let them know the dosage of steroids they could > use.  So she got started yesterday…three day thing no taper… > anyway, OHSU called her today, and wanted to know what > her doc had said…well she never sees her doc when this > happens…she just communicates with the nurse, nurse > talks to doc, doc talks to nurse, nurse talks to DD…OHSU > was freaked!!!  So how many of you actually see your doc > when you have a flareup?  Is this just a Kaiser thing? > Should we be concerned…or is OHSU  overcompetent? > The nurse there talked like this is a "not done" thing > starting an MS patient on steroids without seeing them… > anyone have any experience like this? > Thanks, > Sue D.

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I also have Kaiser and live in the Portland area.  Kaiser has what is called a Nurse Practitioner who specializes in MS.  She works in conjunction with the neurologist.  She has groups for Newly Diagnosed, Helps you decide which ABC drug, if any, to use.  Works with your employer if you need special accommodations at work.  She covers multitude of areas, one of witch is being the go between you and your doctor and any third party if oked by you. She converses with your doctor regarding each contact, call, or question. And she is there for moral support. I think having an MS neuro nurse is great.  I get my questions answered usually the same day.  However, I have pretty much outgrown the need for her, only because after being on Avonex for 2 years I have not had any major flare ups that I need to deal with.  I just see my neuro about every 6 to 8 months, to check my stability and meds. – Hide quoted text — Show quoted text ->"Davis" <pack-al…@verizon.net> wrote in message >> Hi all, I’m asking a question for my daughter.  She just started in a >> tcr peptide study at OHSU, and is seeming to have a flare up. >> Reported it to OHSU, they said she should talk with her doc >> and they would let them know the dosage of steroids they could >> use.  So she got started yesterday…three day thing no taper… >> anyway, OHSU called her today, and wanted to know what >> her doc had said…well she never sees her doc when this >> happens…she just communicates with the nurse, nurse >> talks to doc, doc talks to nurse, nurse talks to DD…OHSU >> was freaked!!!  So how many of you actually see your doc >> when you have a flareup?  Is this just a Kaiser thing? >> Should we be concerned…or is OHSU  overcompetent? >> The nurse there talked like this is a "not done" thing >> starting an MS patient on steroids without seeing them… >> anyone have any experience like this? >> Thanks, >> Sue D.

Response:

On Fri, 17 Aug 2001 17:49:42 -0700, "Michael" <muirh…@island.net> wrote: }Not me, that’s for sure.  This is the first time I’ve ever even *heard* of }anything like this.   Should you be concerned?  I dunno, really… *I* sure would }be.

I have never had IVMP without being seen by my neuro first. He had to actually write the order. The clinic nurses would not advise it without my being seen. Sounds like very poor medical practice to me. Anyhow, nurses don’t, or should not, diagnose, especially over the telephone! Joan

Response:

"Davis" <pack-al…@verizon.net> wrote in message

news:3b7d6ae3.139201062@news.verizon.net… – Hide quoted text — Show quoted text -> Hi all, I’m asking a question for my daughter.  She just started in a > tcr peptide study at OHSU, and is seeming to have a flare up. > Reported it to OHSU, they said she should talk with her doc > and they would let them know the dosage of steroids they could > use.  So she got started yesterday…three day thing no taper… > anyway, OHSU called her today, and wanted to know what > her doc had said…well she never sees her doc when this > happens…she just communicates with the nurse, nurse > talks to doc, doc talks to nurse, nurse talks to DD…OHSU > was freaked!!!  So how many of you actually see your doc > when you have a flareup?  Is this just a Kaiser thing? > Should we be concerned…or is OHSU  overcompetent? > The nurse there talked like this is a "not done" thing > starting an MS patient on steroids without seeing them… > anyone have any experience like this?

My neuro would not think twice about a dose pack of steroids with out seeing me. He does put a lot of trust in what I tell him though. In fact he gave me a prescription to start if a problem started up during physical therapy with my neck like it did last time to get a head start on it. Gordon

Response:

Hi all, I’m asking a question for my daughter.  She just started in a tcr peptide study at OHSU, and is seeming to have a flare up. Reported it to OHSU, they said she should talk with her doc and they would let them know the dosage of steroids they could use.  So she got started yesterday…three day thing no taper… anyway, OHSU called her today, and wanted to know what her doc had said…well she never sees her doc when this happens…she just communicates with the nurse, nurse talks to doc, doc talks to nurse, nurse talks to DD…OHSU was freaked!!!  So how many of you actually see your doc when you have a flareup?  Is this just a Kaiser thing? Should we be concerned…or is OHSU  overcompetent? The nurse there talked like this is a "not done" thing starting an MS patient on steroids without seeing them… anyone have any experience like this? Thanks, Sue D.

Response:

Hi Sue, it may be just Kaiser. I’ve always seen my neuro whenever I’ve had a problem. I’m sure the nurses really know just as much (pls, no offense to docs) but I’m more comfortable with an "eyeball to eyeball" relationship with the dr.  Shirl "Davis" <pack-al…@verizon.net> wrote in message

news:3b7d6ae3.139201062@news.verizon.net… SNIP: So how many of you actually see your doc – Hide quoted text — Show quoted text -> when you have a flareup?  Is this just a Kaiser thing? > Should we be concerned…or is OHSU  overcompetent? > The nurse there talked like this is a "not done" thing > starting an MS patient on steroids without seeing them… > anyone have any experience like this? > Thanks, > Sue D.

Response:

Hi!  I  took part in a peptide vaccine at SUNY@Stony Brook, NY in 1997. I felt the vaccine helped but it didn’t move into wider trials here.         When I’ve had steroids for a flare the doc always checks if I might have an infection which might result in the sx I’m experiencing before choosing to begin steroid therapy. If I’m infection-free Dr. Coyle will then prescribe home infusion of iv therapy. This is because I’ve had steroid therapy in the past. If your daughter hasn’t she may want to do it in a hospital where her rection to this therapy can be monitored.                         Jayne

Response:

"Davis" <pack-al…@verizon.net> wrote in message

news:3b7d6ae3.139201062@news.verizon.net… >  So she got started yesterday…three day thing no taper… > anyway, OHSU called her today, and wanted to know what > her doc had said…well she never sees her doc when this > happens…she just communicates with the nurse, nurse > talks to doc, doc talks to nurse, nurse talks to DD…OHSU > was freaked!!!  So how many of you actually see your doc > when you have a flareup?  Is this just a Kaiser thing?

I dunno about Kaiser, but I know a little about IV steroids.   Anyone who prescribes medicine as powerful and potentially dangerous as Solu-medrol without an exam – in a second-hand conversation (please tell me this wasn’t done over the phone!) no less – should be forbidden to practice medicine, IMHO. You don’t need a neuro to prescribe a course of steroids (though your neuro should be advised in writing, just to keep your records up to date,) but you sure as hell outta have a doctor present to get a look at you before the IV is started. I’d actually be surpised if something like this would even be *legal* in Canada. Personally, I wouldn’t do a course of steroids without being hospitalized for the duration of the infusion, plus another 3 or 4 days tacked on the far end of it for safety’s sake… but then, I tend to go right out of my mind on that stuff, so it’s a good idea for someone to have a chemical straitjacket at the ready, and that means a having doc handy 24/7 for at least a week. > Should we be concerned…or is OHSU  overcompetent? > The nurse there talked like this is a "not done" thing > starting an MS patient on steroids without seeing them… > anyone have any experience like this?

Not me, that’s for sure.  This is the first time I’ve ever even *heard* of anything like this.   Should you be concerned?  I dunno, really… *I* sure would be. As an aside, however… if it really *is* OK to do something like this with as potent a drug as methylprednislone, how come it requires 2 specialists’ signatures and endless red tape, and can take up to a year to get permission to smoke a joint to curtail nausea from cancer chemotherapy?  (Even then, you have to be a Canadian citizen, living in Canada… it’s illegal everywhere else on Earth.) —      ((((((((((U))))))))))  Michael <muirh…@island.net> -=| Livin’ on Mercury Island |=-

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