Wednesday, April 25, 2007

Is It Helping?...

I don't have much time today for a long-winded post (aren't YOU the fortunate ones?!?), but I wanted to respond to ADINA'S comment in the previous post regarding my experience with NOVANTRONE. Her question was generalized and surrounding my belief if the the drug was helping me or not. So here's my response:

Since I have only had one dose of the blue juice, it is really too soon to tell if there has been a clinical benefit from the drug. I am still awaiting Dr. She Who Will Not Be Named reply regarding my most recent MRI...however...in my humble medical opinion (cough, cough), it DOES appear there has been a lessening of enhancing lesions in my brain. I had a fairly large lesion in the back regions of my noggin that was lighting up like an interrogation light back in November 2006, and this does not appear to be enhancing currently...so I can only assume this is a "good thing".

Subjectively speaking (definitely a "scientific" term...LOL), I had about a week to ten days of feeling quite a bit of fatigue immediately following my first infusion. This was followed by what I have called my "flight into health" (because I'm still not sure if it was the drug or just a figment of my imagination) of another 3 weeks of feeling the best I had felt since before my diagnosis. This is not a typical or "usual" response to Novantrone...blood counts generally plummet by about 10-14 days post infusion, so one would expect I might feel quite fatigued at that point. I didn't...I felt great! Slowly, following my "happy" time, I gradually returned to my baseline norm of feeling tired, bitchy, having bizarre MS symptoms coming and going, and basically feeling like I have for the past 4 years. I had a return of pain in my legs, lower back, left arm, developed mystery migraines x 2, buzzing in my left ear, and an assortment of other creepy symptoms, which you can read about at http://journals.aol.com/baitulos/BrainCheese/ , the OLD CHEESE SITE, which has not yet been brought over to THIS site (if you're interested).

I remain hopeful this drug will halt the progression of my MS...this will be determined by a combination of subjective symptoms and MRI. But in "patient speak", I think there HAS been some improvement...so I'll keep signing up for the juice until I feel otherwise. Regardless of the arm-twisting techniques of Dr. SWWNBN!!!...

2 comments:

Adina said...

thanks for taking the time to answer…I am glad it’s helping you. My doc suggested chemo for me also(Cytoxan) but I am scared to try it .I am afraid of compromising whatever quality of life I have . …I actually do not have any more live activity on my brain so I was wondering how would chemo help me ?? I do IVIG monthly and seems to help some how …I always said that MS is a disease with multiple personalities , you never know which one will take over your body.. LOL!!!

BRAINCHEESE said...

ADINA:

Go with your gut...that's what I always say. Oh...and a basic understanding of the disease process helps, too! LOL

Frankly, I think MS might be a disease of the sarcastically intelligent...I mean, look around...we're all just too dayumed funny for our own good!

LD