News from Hopkins

I had an appointment with my doc at Hopkins on Friday to follow up on my incident in AZ. My lesions have not grown nor have they shrunk. He also does not think we have hit the plateau needed to stop the progression of my symptoms.......obviously since I need assistance to walk right now.

We have the following options for reaching the plateau needed:

1. Take vitamin E - harmless and helps some people
2. Coumadin treatment - a blood thinner taken with the idea that there are possible tiny blood clots in my spine causing this problem. Risk is bleeding and I am a HUGE fall risk.
3. Hyperbaric oxygen treatments - the idea here is that my spine is being deprived o2. Risk is my lung condition from before (BOOP) and would I not be a good candidate. Also this treatment could put stress on my heart; an organ I have managed not to mess with yet.
4. Cytoxan - a chemo drug I have taking in the past that is sort of stepping the steroids up a notch to knock out any inflammation if that is the cause. The drawback with this treatment is my sensitive liver.

So my doctor is consulting with all the other docs to see what is best and hopefully get started with a treatment early this week. Pretty much he laid it out that there is not a lot of research for radiation myltetits. We don't know what is causing the flare ups (need for O2, inflammation, blood clots) and there is no simple test to do a check see. Pretty much we need to start trying treatments and hopefully something will work. He stressed again that this is a long road and that none of these treatments are going to have me wakeing up the next day feeling better.

I am in somewhat uncharted territory and it is reminiscent of the pregnant with cancer feeling. You just have to take the leap and have faith.