Tag Archives: sarah cannon

I’m winning, Leukemia is losing!

Blood Counts

After 3 1/2 28 day cycles of treatment in this ipi-145 clinical trial, The trends from my CT scans and CBC tests are all pointing towards more normal blood counts and hopefully a partial remission. The WBC and Neutrophil counts show quite a bit of variability from week to week but they are trending in more normal directions. Can’t thank Dr Flinn and the team at Tennessee Oncology/Sarah Cannon Research enough.

Merry Christmas to Don!!!

Happy Thanksgiving

turkey-dinnerAs we celebrate Thanksgiving Day here in the US, I want to share my gratitude for this difficult but good year. In the middle of the hardships have been many blessings.

  • To my Lord Jesus and Father God for keeping me going each day and somehow always providing for all my needs
  • My family and friends for their unwavering love and support.
  • To the entire team at Sarah Cannon Research Institute / Tennessee Oncology / Sarah Cannon Center for Blood Cancers for helping start to beat this wretched leukemia into retreat.
  • To all my new friends and family at Middle Tennessee Camp Bluebird for their cheer, support and love.

Rallying Cry

When I first got this CLL diagnosis two years ago, I picked out this Tom Petty song as a rallying cry; something to remind me of everything that was truly important to me on those coming days when it might not seem like the future was so bright. Right now, thanks to my clinical trial team at Sarah Cannon Research and Infinity Pharmaceuticals the future is looking pretty bright indeed but as a musician I still really wanted to do this and the song has taken on a very personal meaning. If you’ve seen my Fight Song page, you’ll understand. 😎

My good friend Chris generously supplied the guitar/drum track and we did the rest at home on some fairly inexpensive recording gear. Sheila and I are both singing and I played the bass guitar. It’s a bit country, it’s a lot Rock & Roll. No, we’re not pros by any stretch of the imagination but I was really pleased with how it came out.

Hey, I will stand my ground and I won’t back down!

Hold that thought…

WaitingForDoctorI saw my hematologist/oncologist Dr Flinn today and he is encouraged with the results we are seeing so far on the ipi-145 investigational drug (Me too but it’s still early in the game). My blood counts are seemingly on their way back. We discussed my recent ER visit and gall bladder issues and for reasons I don’t yet understand, he said he would probably want me to wait a while on the surgery. I know my risk for opportunistic infections is pretty high still. I am still meeting with the surgeon later this week and after that will have another talk with Dr Flinn about where we go from here.

PeeKay

PKMany military vets are familiar with the term KP or Kitchen Patrol. It’s not much fun but basic work that has to be done to feed the masses. Clinical trials on the other hand offer days filled with PK or Pharmacokinetics. Yesterday, I had a PK day. According to Webster’s, it means:

the study of the bodily absorption, distribution, metabolism, and excretion of drugs.

What’s all that mean in English or practical terms? This drug I am taking (ipi-145) is being investigated for safety and effectiveness in treating leukemias and lymphomas so the drug company has to compile a LOT of data to make decisions about it for future phase 2 & 3 trials and ultimately to request approval from the FDA to market and sell the drug for general use. The first day of every 28 day cycle in the clinical trial, I have to go to the clinic for what amounts to a 10-11 hour day. First I arrive for 7am where my vitals are checked and basic blood panels are run (CBC, Chemistry and a baseline (before dosing) trial drug level sample is collected). Assuming there are no negative indicators in those panels, the trial drug will be administered about 1-2 hours later which is followed by successive blood draws and 3 consecutive EKG tests at 30, 60,120,180,240,360 and 480 minutes following. All those blood samples are sent off to the drug company primarily for them to measure the blood (serum) level of the drug at those intervals.

yawn

Wasn’t that exciting? No, not really but my goal in participating in this is 1. That I can regain my own health from CLL and 2.  That I can help this new drug come to market so that others in the future may benefit from this research and not have suffer through toxic and often ineffective chemotherapies.

The moment that really made our day was seeing Barbara, the bread lady. Nothing helps break up a long day like being offered some yummy home made treats!  🙂