Monday, November 1, 2010
Some drama....
Well today was a weird day. I had my 18 month checkup and it went ok. While my counts remain stable, my genetic testing is not where he would like it at this point. So, we have decided to stop Gleevec and go onto a new, better medication called Sprycel. From all the reading, this is superior to Gleevec in many ways and will likely become the primary treatment for many patients soon. I am a bit apprehensive since I am now one step closer to the dreaded Bone Marrow Transplant, but still a long ways off. Chrissy did not handle the news well at first. Since I have read up on all these medications, I was aware that the new medication can cause a cardiac condition known as Long QT syndrome. When I brought that up to the doctor, she became upset. They ran an EKG to make sure I am not at risk, and I will start sometime this week!
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Well, you didn't really fail Gleevec, so I wouldn't consider a change in therapy one step closer to BM transplant.
ReplyDeleteI stumbled across your blog on Facebook and it is absolutely amazing. My 17 year old son was dignosed with CML in May 2010 and although his care at Cincinnati Children's is phenemonal and he is doing wonderfully on Gleevec, it is impossible to find any kind of support system because CML is so rare in teens and young adults like yourself. We will follow your blog and wish you continued good health on the Sprycel.
ReplyDeleteThat is the right approach to medication which most of us forget.The treatment as decided by the doctor has to show improvements on you ...if not then you must learn to take another route soon enough.
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ReplyDeletecase there is anyone who has similar problem and still
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sicklecell
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It is no secret that I have a very deep and personal relationship with God. I have pushed and resisted that relationship this past year through all the bullshit I have had to go through living with Herpes but once again, God is bigger than my stubbornness and broke through that outbreak cold sore and all I had Genital Herpes. For me personally, hearing over and over how I am not good enough has really invaded my mind in the worst way possible. I completely shut down and I was just waking up like is this how life going to end this temporary herpes outbreak “fuck everybody with herpes if you know what I mean” but let's be honest here...
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