It’s been a stressful couple of weeks to say the least. The saga of my bilirubum count continues. Since my last treatment on September 25th my bilirubin levels have been going up and down. When my total is down my direct is up and vise versa. A sure sign of Gilbert’s Syndrome. Should be interesting when the test comes back ( in approx 4-6 weeks) to see if it’s confirmed that I have this condition.
This week’s blood test came in right at the cutoff so I’m cleared for chemo tomorrow. I’ll also see the doctor and need to get some things clarified with this trial. The way it was explained to me last week that even if I have Gilberts, it would have needed to been documented BEFORE I started on the trial. Considering only 6% have this condition (and until now I never heard of it) who would have thought to test for it. Doesn’t sound logical but when did medicine and logic ever cross paths. Odds are that getting both numbers in line to meet the requirement are not good. So you’re probably wondering why this hadn’t come up in the past – well because until recently I was only tested for the Bilirubin Total and not the Direct.
My doctor did share with me that she thought this trial drug was going to be released soon so hopefully we can hang on until then. My good friend Vicki who is also an Oncologist also suggested that I may want to apply for “compassionate care” with the trial which basically lets them give it to me but the data will not be used for the trial.
Stayed tuned for part three of this never ending tale.
Until then – Keep On Dancin’
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment