Tuesday, April 12, 2011

Of Mice and Men

I have spoken to Nick a few times and he is having a great time in Moab with his rock climbing campers. I am excited to see the pictures and hear the stories!

Because he was neutropenic, he had to have labs done last Monday. His platelets were very low so he got to take a break in his blood thinning shots. Nothing like rock climbing when you have to be careful about bruising and not being able to have blood that clots and potentially face internal bleeding. Ok, that's a total "mom" comment. He had to have labs done again on Thursday (he was able to go to Moab Hospital and they faxed results to Huntsman). Platelets are back up a bit but confirmed his hemoglobin has been steadily dropping over the past couple of months. This is the part of the red blood cells that carry oxygen to the body from the lungs. He is very anemic, feeling pretty fatigued. He might get a blood transfusion next week when he goes in for his dr appointment next week just to give him a boost. This is also indicative that his bone marrow isn't bouncing back like it used to because of how long he has been on chemo. Frankly, we are all surprised he has been able to tolerate the chemo this long.

So, since NY still isn't ready to enroll patients for their clinical trial, Nick will enroll in the Salt Lake trial LDK378, developed by Novartis. It was designed for anaplastic lymphoma kinase (ALK) but doctors determined that the rhabdo cell has similar characteristics and have agreed to accept rhabdo patients, too. We will learn more on the 18th, but all I know so far is that it is an oral pill. Nick said he is only concerned about the side effects, but I need to remind him that is why it is a phase one trial - they are using HIM to find out what the side affects are! It has never been tested on humans before. The good news, in a weird and disturbing way, is that this new drug slows down cancer growth in mice. It's the dosage they have to fine tune. Nick is in for a barrage of tests: EKG, PET, CT, MRI, labs, labs and more labs.

That's it for now, we will post more about camp and clinical trial details next week. Blessings to all!



Chris Ulvin said...

Good Morning Lori and family,
Thank you for the up date. I see it as answered prayers (thank you to all who follow this site and pray) that Nick is at, participating, and enjoying First Descent Climbing Camp. Today's news has inspired me to go to American Red Cross and donate blood. I'll be praying for LDK378 as my life-saving blood is being drawn. May God's life giving grace cover Nick and his family always. Amen.
Love, aunt Chris

Jay Paterson said...

Sounds like it's a good thing he's out at Moab having F.U. N.

Anonymous said...

And so the roller coaster ride continues!!! Okay clinical study - do your thing and be the answer to our prayers. Love & light - GM Jennie xxx