Brain and Liver Update

I can't believe I didn't do a blog on this already... I'm a bit scatter brained lately. Guess we can pretend it is the brain tumor but after finding out it is SMALLER it is not as likely. Yes, it is smaller! In one month it went from 6mm to 5mm. This is very good because it wasn't thought that the meds would reach my brain lesion so to have it shrink in a month is impressive. My doctor was shocked it had shrank so much without radiation. That said, we are still pursuing the SRS radiation. The hope is to do it after my surgery is done and I have healed a bit. Hopefully in the next month.

My liver is down even more as well! Both are only 10-20 points about the average numbers. It was a good appointment for sure. They are having me stop the meds (as of two days ago) to see if the numbers continue to stay down. I will find out tomorrow (or the next day) whether or not they are still down. If they are still down then I can stay off of the CellCept (liver med) and just monitor the levels.

I really like when appointments have only good news in them, I could get used to that!

Liver ... I need you to work with me!

The liver saga continues!

I got the liver biopsy results today and it showed drug related inflammation and the same characteristics of autoimmune hepatitis. As not fun as that sounds, it is actually better for me for the moment. Because it shows the same properties as a compromised, damaged liver I am ok to start a drug that is usually used for liver transplant patients. This drug is called CellCept. I can also start tapering off, yes off, of the prednisone (steroids) that I dislike so much. The goal is to get me off of the steroids for a couple reasons, one being the long term effects are large and the general side effects are a lot to deal with (if you haven't noticed...) and the second and main reason is that I can not start a new systemic cancer treatment while on steroids. If everything goes well I will be down to 5mg or off completely in 3-4 weeks. Goodbye chipmunk cheeks, extra water weight, irritability, ravenous eating, shaking hands/body and sleepless nights! 

I also had my liver levels checked today and sadly they are elevated even more than I was when they admitted me two weeks ago, in the 700's. Thankfully they agreed that I could monitor from home and not be admitted to just sit in the hospital. I was worried that they were high again because I have been extremely tired the last few days and extra itchy (one of the signs that my bilirubin is higher than usual but I don't have any yellow discoloration). I don't have the normal symptoms of an elevated/pissed off liver like dark urine, yellow skin or eyes. If I start to see these things then I will go in, but even when I was at 1200 I didn't have these symptoms so I don't think it will be a problem. I am just happy to not be sitting in the hospital writing this! 

I will start these meds as soon as my pharmacy fills them - most likely Thursday morning (day after tomorrow) I am hoping that the side effects aren't too intense and are easier to deal with than the steroids. We shall see. 

So liver, I need you to work with me! Please tolerate and respond to this new med so I can move forward in treatment and not waste anymore valuable time. Just being off of a treatment for two weeks my tumors in my neck have started to grow. Who knows what is happening in my brain and lungs. I try not to think about it. Still no symptoms from those areas so I am hoping to keep it that way.