Thursday, September 2, 2010

Traded to Houston?

Hey all! Im hoping this message finds everyone doing well. So as Mandy probably mentioned recently, I had some of the blast cells show up again in my blood results about 3 weeks ago. My doctor was prepared to manage this with an additional chemo pill called Hydroxurea. She was on vacation recently, but with strict instructions to contact her if my blasts were increasing. Apparently the last two tests since the bad one have been fairly normal other than my red blood cell count and platelets decreasing a bit. Also three weeks ago my liver function test was a bit high and concerning.

Well I just got off the phone with Dr. Oehler this morning, and she informed me that she could not find any blasts in the blood from this Monday's blood test, and that my liver function had improved to non-concerning levels. She also told me she had approval for a new drug called Busatinib from the company, but would need to go through FDA approval and SCCA ethics committee approval. That may be about 3 weeks away. At the same time it looks like the race is on between an Ariad trial opening up in Houston and Seattle. The one in Houston will probably open up first, but the one in Seattle may not be too far behind. When we had talked with Dr. Oehler a few weeks back it appeared likely that upon acceptance I may be headed down to Houston for awhile, and then brought back up to Seattle when the trial opens here. At the time it seemed likely there would be about a 6-8 week difference, but now it may be less.

So essentially we are in a holding pattern based on drug approval, trial approval, and of course my blood results going forward. I am encouraged that my Nilotinib has held me up this long, and that I feel relatively okay. Ive been able to get out occassionally for golf and Ive also been able to attend a couple Sounders games. As usual I continue to play what my father calls (little boys games)........keep in mind he participates in these also..........fantasy golf, baseball, football. In Yahoo fantasy golf, there are approximately 120,000 to 150,000 people involved competing in various leagues. There is one section where you can see how you compare to all users, and I recently cracked the top 50 and sat at 26th place overall for all users. I am now back down to 64th with 3 weeks left, so wish me luck. I know I know its just fantasy sports, but how often can you say you were in the top 50 in the world at something?? Okay enough bragging!

The next couple weeks will probably find us steering the ship towards our next course of action with my Leukemia. I continue to remain positive that eventually we will find ourselves headed in the right direction, and maybe just maybe get to a place where it could appear further in the rearview mirror.

Take care everyone and have a great Labor Day!


1 comment:

  1. good to know that there is a plan in place for you...I've been following your journey for awhile now...I have no matches for me can be found on the I will proceed to a Haplo with cells from one of my children should my response to the Tasigna start to slip...I live in Canada and access to trial drugs are a bit slower here...I am glad to hear that you are feeling well...I find Tasigna so much better than Gleevec in terms of side-effects...

    I'm sending prayers your way that the nasty blasts are behind you...

    Cheryl Thornton