Last Monday my mom and I went back to Nashville. I had labs and an appt with the Dr. One of the things I have noticed about Vanderbilt in comparsion to MD Anderson, is that they are not used to having patients from out of state. At MDA that is very common, apparently, at Vanderbilt that is not. Therefore, they do not really work with you in their scheduling. I am kind of at their mercy, which is quite annoying I must say! But, it is what it is. Nothing I can do about it.
Anyway, last Monday I had labs and an appt with the Dr. Luckily, my counts are going UP! Woo Hoo! When I was in the ER my white blood cells were down to a 1.5 and my red blood cells were at a 2, my potassium was low and my calcium was low. So, for some odd reason the RO5 is dropping my counts. That isn't typical, so they aren't quite sure why that is happening to me. I have been able to start back on my vitamins and that has certainly helped how I have felt. Which is nice! I do worry about how the supplements are affecting the effectiveness of the RO5. Since it is a new drug, there really aren't any statistics on that. I guess we will see.
On Monday it was decided that I would (re)start the RO5 at a lower dose. I am now taking 720 mg in the morning and 720 mg in the evening.
I have been a little hesistant in posting about this because I didn't want to jinx myself! Last time it seemed like the minute I posted that everything was going well, the side effects started! So, in fear of jinxing myself I am not going to say to much!
But, I will tell you that....the tumor I can feel in my groin is almost GONE!!! Can you believe it? For some odd reason I have some fluid build up above the tumor, the Dr wasn't worried about it so I guess I won't either. It doesn't hurt and it's "squishy" so I know it's not cancer. Chances are it's fluid build up from the rash that I had. My hands swelled really bad from the rash also. Luckily, that has gone away. The fluid in the groin has not for some reason.
I know some of you have been wondering what is going on. Sorry for the delay in posting. I just didn't want to jinx myself!!
Sjogren's and Bicycles
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