November 2, 1998

I don't believe this (Why do people say that, I do believe it!) I'm stopping treatment.

A followup on the left ventricle is showing that a slight weakness is occurring. My doctor feels that I could be at risk if I continued. What I don't believe but it's par for the course, is that they (Germany 91, Journal #1) did followups on over 4000 people and found 3 people with any cardiomyopathy! Considering that I feel that I've gone as far as I can with improvements (my second reason) which are not as apparent as they should be after a year this month of trying, I'll be stopping. Granted, my environment hasn't helped, which I think has had a damaging effect. Along with exercising or lack of exercising, my body hasn't had a chance to be put to its limits on a regular basis.

"Dexrazoxane (DEX) selectively blocks the development of irreversible diffuse myocardial toxicity induced by anthracyclines and related antitumor agents,such as mitoxantrone (MTX).

"I don't know if I can get Dexrazoxane, I'm looking into that now.

Looking back, I'm in that 40% group (Journal entry #1) that had "Some" improvement but not that "58% Remarkable" improvement. I'll continue exercising, hopefully on a regular basis and using the EMS unit, (if it's ever approved!!). Jesse, the person exercising me has made contact with an Instructor of Swedish Massage, that's going to arrange for her students to practice on me. This should improve my ROM and circulation. AND hopefully my disposition! I'll find out now, if this treatment stays with a person after they've reached the maximum.

I haven't given up. All though I do feel like the character, Charlie in "Flowers for Algernon"! In that I've had remarkable (in my opinion) improvements at the beginning but they've slacked off, not completely going back to before treatment but lessening from the beginning of treatments. The improvements I have don't add up to 40% by any means but improvements are there. My hand opening easier than before, tapping my index finger,touching my eyes and sitting up without having my chest strapped in while exercising my arms. Again, I don't know if these improvements are less due to my MS individual response or the stress of my home environment, which I've mentioned many times! These factors Can be detrimental to an MSers health, as we All know too well!

Novantrone has been studied for at least 13 years, with positive results. I've said from the beginning "I've got nothing to lose" and "I'm too stubborn to quit!" I was hoping to be one of the people in the 58% range but I'm not really surprised! That sounds like a Defeatists, but I'm not. I don't know why I'm here, maybe it's to be a voice for the MSers that aren't as stubborn and don't yell quite as loud! < smile >

I had an MRI done this October, the results don't really apply to this treatment because I didn't have an MRI at the beginning for a baseline (thanks to Medi-Cal!). My last MRI was in 1993, showing 3 lesions (if I remember correctly). This MRI there's ?? lesions., much more than previous. The first MRI was done when I was still driving and using a manual wheelchair. So the statement of the Reading Radiologist that reported on this MRI, "Appears to be an increase of white matter lesions" only means that from '93 to now my level of disability coincides with the added lesions! I wish I would have had a MRI at the beginning of this treatment but that wasn't in the cards or in "Their" (Medi-Cal) wisdom.

So, I'll be trying to get Dexrazoxane and continue Novantrone until I meet the maximum Allowable. While this is going on, I'll be looking into other options. I have a few ideas that have been getting noticed but aren't accepted... but what's new about that!!

With continuous exercising, massage and eventually a conducive environment, something positive should happen! With this Dexrazoxane no one should be denied treatment, at least there's a way to stop the damage that mitoxantrone can cause.