Friday, February 20, 2015

Where did the last month go?!

Well, guess its time for an update, cant sleep which isnt anything out of the ordinary as I havent really been able to sleep for over a month now...

Mid January I went in for my nivolumab infusion thinking everything was kosher and after a long wait in the room, dr came in and told me I wasnt getting drug that day, in fact, I'm going to need an infusion of prednisone stat as my liver enzymes were out of control, my AST was almost 20 x higher than normal.  My own body was attacking my liver.  It happens with this drug sometimes, it mimicks gvhd for some reason even though I've never received someone elses stem cells. 

So, I was on 200 mg of prednisone every day, what a trip...  The time I was on that dose is a total blur, literally.  The side effects were horrific.  Imagine wanting to jump out of your skin at all times of the day, heart racing constantly,  not knowing weather I'm coming or going, not able to think straight and having an appetite of two or three of me!  I would wake up from a hazy half sleep needing to eat to re-enter that same weird almost sleeplike state at night. 

Then the cramps started....

This was the worst part by far.  Its still happeing now but nowhere near as bad as it was.  For a little while there, the cramping or uncontrollable contorting of my hands would last for hours on end with nothing I could do about it but bear the pain and try to do whatever I could to counter whatever contortion was happening at the moment.  For instance, if my hand was locking up, I tried to pull my fingers back into place.  It was futile trying to fight it but there was nothing else I could do.  I discovered icy hot helped a little to loosen the muscles but it became too much after the third night of zero sleep and I decided to start reducing the prednisone dose earlier than scheduled, at that point I didnt care what happened to my liver, I couldnt live like that...

Good news is I just went in last Monday and thank God, my levels are starting to resolve and I'm down to 30mg of prednisone now which is so so much more manageable.  I still have the racing heart and an episode tonight of cramping in my abdomen and back strangely but I think it may have been a hydration issue instead of prednisone side effect.  Who knows actually, I have come to expect the unexpected regsrding side effects with this crap.  Cant wait till I can wean off completely. 

So I'm taking a break obviously from treatment while my liver recovers and the hope is to resume asap with reduced dose and hope my body adjusts as the drug works for me at the moment and with generally mild side effects if you remove the liver damage situation haha.

Life otherwise has been good.  My family is more stable, Nicole is slowly doing better, my Mom is doing much better, so proud of both of them for what they've been through, all of us actually, crazy what we've all been through.  Makes the wins in life so much sweeter when you've struggled so hard to get to ground zero...

That's all I've got for now.  Thankful for everything I have - most importantly my health - which I treasure every day that I feel ok.  I am truly blessed.



Wednesday, February 11, 2015


Has taken over my life for more than a month.  Ready to be done with this shit and onto the next chapter of my life.  Will go into more detail and recall what I can remember when I'm ready.  Thanks for checking in and all of your support!