Saturday, March 5, 2011

...Hello Gleevec...

Id like to make a HUGE announcement...
i got accepted into a clinical trial to take 'gleevec'!!

i am 1 in 20 patients that are going to be a part of this, it is open world wide, though i don't think anyone from out of this continent is in yet. i feel sooo incredibly lucky. i can not help but cry with what this means for me! you guys, this could cause my tumors to shrink! please check out this link if you'd like

gleevec is a drug that has been around for 15+ years for patients with leukemia and other cancers. a couple years ago they discovered that it can help plexiform tumors in nf1 patients, especially with tumors obstructing breathing apparatuses! um, see ya later scranton strangler and big bertha!! maybe i will get my vocal cord back?!?! Then i can start giving Jewel lessons again. (ha, totally kidding by the way...obviously)

i don't really know what to say except for, "praise the Lord"! could it really be that this is happening? we dont know how my body is going to take to gleevec. there is a chance that nothing at all will change. i do know that through it all i will tell you guys all about it. i will be flying to Indiana next month to start this journey. i will be getting a lot of treatment for free. i will have to pay for travel and labs (lots and lots of labs...good thing my veins are nuts-o and stick way the heck out there, nurses always compliment my veins...) the reason why i need to have all these labs is to make sure that my vital organs are handling gleevec ok. i don't have to move to Indiana or anything, i only have to fly out twice a year for this 2 year study. they will only keep me on the study for 2 years if they are seeing any benefit from it and if i am not having any severe side effects. i am hoping for great things, i am also hoping that i don't have to go up to see my specialists in Seattle during this, nothing wrong with them...i just want as little of doctors in my life as possible. =)

to clear things up, the Indiana doctors will only be seeing me for gleevec and not for general check up for my nuerofibromatosis. so i am unsure if i am going to have to be going to Seattle still. i may have to at least go once a year?

i hope that you all get to see new mri's in 6 months showing how much my tumors have shrunk.
i want to incorperate this clinical trial into my blog, telling you how it is making me feel, and my side effects, all things.

thank you all for your support and love. it is becuase of all of you and my loving God that i even have the courage to face this road before me. please never hesitate to ask me questions about anything. i am an open book. much love from the deepest of my heart to all of you! will get back to you soon.

p.s. please make sure to check out my remodeled blog! i am still getting more things together for it, but i am so happy i have figured out to do some of this stuff!


  1. !!!!!!! Wow. I am so incredibly excited for you my dear. Tears just welled up. You deserve this help. I'm sending love and prayers and I can't wait to have to get out my magnifying glass to find the tumors in your new MRIs ;)

  2. Came across your blog due to twitter. I have a daughter with NF...and ironically we go to the clinic at Riley in Indianapolis. GREAT doctors!! I blog about her story as well. I look forward to reading yours and hearing how the gleevec trial goes for you. :)


  3. So happy to hear about your gleevec trial! Dr. Druker has been helpful with another local Medford family with a rare disease call Niemann-Pick Type C. We wish you all the best.

  4. thank you all for your love and encouragement.... three wise menn... if you would like we can converse through my email. that is just so crazy that we will be going to the same doctors!