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Portrait of walter327
Thanks all for your comments. It is nice to be appreciated
Great news, I think, on the Fentanyl front. I've been able to stretch a 72 hr/ 12.5 mcg patch to 100 hrs w/ no ill effects. I hope one day to be off the stuff, as it interferes w/ marital bliss ;-), and this, hopefully, will make the weaning off easier
Had a wonderful Christmas in Columbia, SC w/ my family and Mom's home cookin'. Lotta love in that house
Have a new Christian song that my gut says is very good. I just need to get a home studio to be able to get it recorded. But, that's way down on the wish list due to responsibilities comin' 1st.

Portrait of walter327
My Dr. made a good point. He feels that, since I'm stable at present, maybe we shouldn't risk all the dangers involved w/ the Leustatin. I tend to agree. His advice is to see if I become symptomatic at some point, then move to a more drastic med. Plus, I want to make sure this Thanksgiving and Christmas are extra special. If I'm on Chemo., I might feel like death frozen, thawed, left in the fridge for two weeks and then micro waved before anyone noticed the green fuzz making an appearance. Don't want that .

Portrait of walter327
Got notification from Johnson & Johnson that I do qualify for assistance w/ the Leustatin. I think I get up to a year of the med for free. The infusion is covered w/ a $40 co-pay per visit
We see my Oncologist next Fri. and will learn all then.

Portrait of walter327
Learned of a possible ECD study in Bethesda, MD to, hopefully, be done late '10 - early '11. They'll be focussing on the history and progression of the disease, which may lead to better treatments and a cure. It's being considrered by the National Health Institute (NHI), who will also pick up the tab for travel, lodging and yummies. My chance to, at last, help my fellow "Afflicteds" w/ other than a blog and letters to the editor
Doc upped my Testim (Testosterone gel) from 3-5 tubes a wk. I negotiated him down to 4 tubes due to cost (stuff is over $400 for just over a month's supply). Ya gotta keep in mind I'm on Fentanyl, Clonazepam, Testim, Interferon and numerous supplements and herbs to ease the side effects. W/ eats, heat, doc appt.'s, etc., we actually need the help. Be nice if a song got picked up
Reminder. I have a more detailed blog at: http://walter327-goodintentions.blogspot.com/

Portrait of walter327
Rubbin' elbows w/ our State Rep., Heath Shuler, to try and get the insurance to cover Cladribine. It's shown promise w/ this disease I have in common w/ VERY few. I'm trying to keep up w/ my blog at: http://walter327-goodintentions.blogspot.com/ .

Portrait of walter327
Potentially great news! A drug called Cladribine has been shown to make drastic improvements in the ECD patients it has been tried on, to the point that no growths were found after about 9 mo.'s to a yr.
I's excited.

Portrait of walter327
Doc says since I've been stable for an extended period, I don't need to bear the cost of MRI's for a while unless I become symptomatic. That means we can actually make some headway on the radiology balance. Alot is happening w/ ECD. The curious can read up at http://walter327-goodintentions.blogspot.com/ or go to erdheim-chester.org.

Portrait of walter327
Ophthalmologist & Time-out
The ophthalmologist was very pleased today. My field of vision has improved along with my vision clarity and eye pressure. I do hate having my pupils dialated, though
Starting Saturday, I'll be giving my wonderful bride a break from me. Family is coming up to give me a ride to Columbia. Wifey will be on vacation for four days and then meet me in Columbia, where we'll spend time w/ both our families and just alone together.

Portrait of Shiloh
really like in america very well written and great job but like me i guess your not puttin out the cookie cutter tunes they are looking for i put some of my tunes out on nsai and they hammered me so i'll just keep on pluggin along and maybe someday

Portrait of walter327
Thanks, Greg
Cancun was wonderful, and we both miss it. There are other places we want to see, though.
 

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