Tuesday, January 23, 2007

Shh! I'm thinking...

     Change of plans...the FOURTH original plan for my continued MS treatment is now up for grabs again.  Since begging Dr. She Who Will Not Be Named NOT to give me any more IV Solumedrol after last Friday's extravaganza response, discussions of the "plan" are back on the table.

     Dr. SWWNBN is pushing Novantrone...I've PUSHED back...neither of us have had much success with our shoving match, so it looks like we are now operating in more of a collaborative mode...and I am left "thinking".

     I don't WANT Novantrone...the doctor worries even if I qualify for the FTY720 study this summer (the soonest I COULD possibly qualify since I received IVIg last month) I may be (and I quote her), "too far gone neurologically to be benefited".  OUCH!!!  At least she shoots straight from the hip I guess...no mincing of words there.

     So...I am left THINKING...would y'all quiet down please so I can concentrate???  LOL  Or, better yet, throw me a comment if you have any experience with Novantrone, know anyone who HAS had Novantrone, or just have some sort of a "sign/omen" you feel compelled to share!  I'll just be sitting over here...thinking... 

3 comments:

crovira2 said...

It depends on how she said "too far gone neurologically to be benefited"

As long as both you and she realize that you and Dr. Stephen Hawkins share in disability. (And she doesn't.)

I wouldn't call Mr. Hawkins any sort of dummy.

I'm sorry but I don't have any experiences with Novantrone. (But I'll ask the audience of my show.)

mdmhvonpa said...

I'm not a victim ... umm, recipient of LDN either.  Everytime I hear that, I think LDS for some reason ... hmmm, Mormans.  I wonder.

pjorpeej said...

Linda, I don't have any personal experience with Novantrone (I'm sorta "saving" that option for when the manure hits the fan <grin>) but I've heard several people in JJ's discuss their treatment and, all in all, I'd say at least 2/3rds of them feel they have benefitted in some way from their treatments.  The rest got no better and no worse.  <shrug>

I can give you the email address of someone I know who's had the treatments if you want.  Or, you could just wander in to JJ's and take your own poll.  Either way, I think you'd get more real, useful information from the users than from any drug company site.  Let me know if I can help you connect to these folks in any way!

Are one of your offered treatments LDN?  I can't say that I know much about that other than there are people who swear by it and those who consider it to be nothing more than "snake oil" medicine...  There doesn't seem to be any rush to get a large scale study done on it's effectiveness in any case.  My dr. laughed heartily when I asked about it.  :)