I finally discussed my last PET/CT with Dr. Ram and he confirmed the basically stable report. He said he is starting to learn more about my disease. There are some people who are on the trial that get an immediate response, go into remission, then within a few infusions find their disease progressing. I have to admit that after my first couple of scans, I was disappointed that I couldn't achieve remission. After talking with Dr. Ram however, it seems like my disease trait is that of a slow growing type that likely won't go away but also won't get real agressive (hopefully). He mentioned that I may be able to stay on this drug for a while. This of course is good and bad news. It's good news if we can figure out how to control the neuropathy. However, if this neuropathy gets worse and I can no longer use my hands or walk of course it's bad news. Hoping Mrs./Dr. Ramchandran can work some magic for me in 3 weeks.
We also discussed the issue of my eroding vertebrae. He mentioned it was pretty small and it appears that my body is "filling in" the area that has been infiltrated. Its confusing to me though as the cancer is still active in there. He told me that they'll be keeping a close eye on it. I may need surgery down the road which of course is always risky... He also brought up radiation again although did mention that radiating the area would further weaken the bone. I guess I'd have to choose the lesser of the two evils if and when we get to that point.
Anyway, that's about it for now. I'm here with my Mom and Sister today and conned them in to taking a picture, ha! My Mom is making me a little bear that's supposed to be from my younger cousin (her idea, very sweet) who can't do it herself because of her eyesight. So, thanks Kristina and Mom!
My Mom and Sister Nicole cheesin in the room with me.
My nurse Melanie, she's very nice :)
Need to come up with a name for this bear... Is it me, or does he look like he's on something...?!
3 comments:
That bear is definitely on something...your computer!!! hardy har har ;)
With my Chris ( who's sister is also a Nicole) seemed in hindsight to have great responses to all the Chemo and stem cell transplants, was told three times he was cancer free but within weeks the signs of the obscenity were back and it moved very fast.
I noticed on the SGN35 that after the 2nd infusion his symptoms and lumps were gone. I have to wonder if the H1N1 hadn't taken him would the obscenity come back ? I don't know.... what I do know is that intitially the Dr. didn't take this HL seriously enough as they believed their own stats 95 % cure rate so time was wasted twice in Chris case ....
I wonder did you ever have mono or exposure to the Epstein Barr virus , that is what at least one Dr. thinks set Chris's HL off to begin with and the fact that his immune system actually helped the cancer cells grow as they didn't see them as a threat? Anyway best wishes Loraine
Just read about the bathroom in Atlanta and it actually made me laugh. Adrienne was in the New York Presbyterian ER once, all night, with all the recent arrestees and a lot of cops (they put her in a private room, thank goodness). I listened to men trying to pee most of the night, usually behind a curtain (note the usually). Yes, it was disgusting but you need to have a sense of humor about these things. Eventually, one of the cops got a nurse to get me a sleeper chair for Adrienne's room. Ah, quiet.
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