Sunday, May 16, 2010

Trial Update

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!!


  1. Thanks for the update - was really thinking about you. Stay strong!!

  2. I hear you on the jinxing...just as long as we know you are okay and things are looking up...that is what I want to hear.
    Keep fighting girl!

  3. I'm so glad to read the tumor is shrinking. I'm glad you updated!

  4. Prayers and well wishes continue to be sent your way! You are doing an amazing job fighting....keep it up!!!!

  5. oo I wouldn't want to jinx anything either! So glad to hear the one tumor is still going down and your counts coming back up!

  6. yea!!!!!! 'nuff said. Oh, and I pray for no bad side effects. Oh, and one more thing (starting to sounds like Lucy here) do you wear hats ever???? Can't believe I dont' know this answer. School's out Friday...wanna have a playdate soon?? Or better yet...Wednesday night 5:30 Outback on West side of town??? Kristin and our friend Becky and I are having dinner...wanna join?

  7. I am so glad to hear that things have been going pretty good lately. YAY!