Friday, April 1, 2011

Chemo by Mouth?

I will write in much more detail soon, but here is a very brief update:

We made it here to Houston, TX, without a hitch and have had fabulous accommodations with our friends Mike and Brenna who have been incredibly gracious.

My consultation with the MD Anderson lymphoma team went well and gave me a lot of hope that we'll beat this without a problem. There has been lots of back and forth between my team here and at Sloan-Kettering and lots of changes over the past two days i.e. I have cancer, I don't have cancer, I qualify for the trial, I don't qualify for the trial, etc. etc. craziness.

But today, on April Fool's, it all settled. I am enrolled in MD Anderson's clinical trial combining Panibinostat (LBH589) and Everolimus (RAD001). They are both experimental targeted therapy oral medications, technically not chemotherapy as they work in a totally different way to go after the Hodgkin lymphoma cells. It will get those chemo resistant bastards.

I'll take an Everolimus pill every day and Panibinostat three times a week. I took my first two today while riding in the car just like taking an aspirin. I didn't explode and I feel nothing so far, this is good. They want to keep me in Houston for the first month to monitor me weekly with blood work and heart test checks. We've secured a sick apartment that we are moving into Monday or Tuesday for our one-month stay.

It's estimated that the side effects won't set in until the third and fourth week - mouth sores, low blood counts, GI fun, but nothing crazy. So, until then I can just live a totally normal life being in constant contact with my nurse practitioner with any strange symptoms. They'll likely have to keep adjusting my dosage for this first month as no one on this trial has been yet able to maintain the highest dosage without a break. We'll be in constant contact about my symptoms and especially how my platelets are holding up.

So, with that said, we're going to all the free Final Four concerts happening here: Sublime, Kings of Leon, Kenny Chesney and we're actually getting to see UConn play at Reliant due to a totally unexpected surprise from some very special people. Final Four, Baby!

It is expected to be in the mid-80s and sunny all weekend and this makes me very happy. We've sampled the Mexican and the BBQ food, and I'm looking forward to eating my way around Houston. My nurse, Amy, told me today that they don't want me to lose weight so I should eat anything and everything. Will do.


  1. Wishing you the very best Karin. I hope things continue to go your way. Can i suggest that you eat at Ninfa's (a mexican chain), we used to live in Corpus Christi and it's delish. Keep staying positive. You are an inspiration.
    Jen (a Morley mom)

  2. flights have been booked and we will be on our way- can't let you have all this fun!! mom and dad will be down during week 3! Love ya!

  3. Welcome to Houston! Glad you made it into the trial. The folks at Anderson are amazing. Hoping for great results for you. Enjoy the basketball & festivities.

  4. You are one tough cookie! Don't you LOVE MD Anderson? They are the cat's pajamas:) If you have a chance (and the appetite) check out Goode Family BBQ on Kirby, not too far from the medical center. Yummo! Enjoy your dear friends and some bball!!! rock on girl!

  5. Welcome to Houston! I work at The Methodist Hospital, right around the corner from MD Anderson. The Texas Medical Center is amazing!

    Ninfa's is fantastic. Any Pappas or Goode Company restaurant is also very good.

    You have been in my thoughts and prayers.

    Tricia L.

  6. Love, love, LOVE reading this post!!! I am feeling really good things for you and hope you enjoy your culinary adventures in and around Houston!