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’
Tuesday, October 30, 2012
Wednesday, October 24, 2012
Wednesday, October 24, 2012
Another big disappointment today as I received a call telling me no chemo again this week.
Yesterday morning was spent seeing the liver specialist. After reviewing my records and examining me he declared that he see’s no evidence of liver disease (besides the cancer). It is his opinion that I may have Gilbert’s Syndrome which affects 6% of the population. Basically it’s a non-fatal genetic condition that causes a higher then normal bilirubin level. This was also my doctor’s opinion when I spoke to her last week. I had blood drawn to confirm this diagnosis. In the mean time because my level is higher then normal until this is confirmed or the level drops I cannot continue with the trial chemo.
To say I’m disappointed, stressed, mad, etc is putting it mildly. I now have not had chemo for 5 weeks which makes me worried that all the good it has done in the last 9 months is being reversed. For someone like me who takes the bull by the horns I feel helpless because there’s nothing I could do except wait.
Not much else to report and to be honest I’m so frustrated I don’t even feel like writing.
Until I know more….
Keep on Dancin’
Yesterday morning was spent seeing the liver specialist. After reviewing my records and examining me he declared that he see’s no evidence of liver disease (besides the cancer). It is his opinion that I may have Gilbert’s Syndrome which affects 6% of the population. Basically it’s a non-fatal genetic condition that causes a higher then normal bilirubin level. This was also my doctor’s opinion when I spoke to her last week. I had blood drawn to confirm this diagnosis. In the mean time because my level is higher then normal until this is confirmed or the level drops I cannot continue with the trial chemo.
To say I’m disappointed, stressed, mad, etc is putting it mildly. I now have not had chemo for 5 weeks which makes me worried that all the good it has done in the last 9 months is being reversed. For someone like me who takes the bull by the horns I feel helpless because there’s nothing I could do except wait.
Not much else to report and to be honest I’m so frustrated I don’t even feel like writing.
Until I know more….
Keep on Dancin’
Thursday, October 18, 2012
Thursday, October 18, 2012
Why is nothing easy? All I want is some normality back in my life. I guess I gave that up 2.5 years ago when this all started.
No chemo yesterday. It seems my bilirubin levels were up and I didn't have the energy to argue. If you remember from my post last month I had the same problem. For those not familiar with what bilirubin is here is some info:
Bilirubin (formerly referred to as hematoidin) is the yellow breakdown product of normal heme catabolism. Heme is found in hemoglobin, a principal component of red blood cells. Bilirubin is excreted in bile and urine, and elevated levels may indicate certain diseases. It is responsible for the yellow color of bruises, the yellow color of urine (via its reduced breakdown product, urobilin), the brown color of feces (via its conversion to stercobilin), and the yellow discoloration in jaundice.
In a nut shell high bilirubin can be an indication of liver damage.
The doctor called me this morning to see how I was ( I think she was more interested in how I was doing mentally rather then physically since she knows I hate changes in my schedule). Although she said I just may have a higher level then most, she still needs to be safe and have it checked out. I have an appointment Tuesday with a Liver Specialist to get a second opinion.
I did share my thoughts on it and thankfully she is open minded and listened to what I had to say. Three weeks ago when my level showed high I did a little research on how to reduce the levels. Basically lots of fruits and veggies, orange juice, low fat meats and no fired or spicy foods. Very similar to a diet you would see for gallbladder problems which makes sense since the liver and gallbladder work together. In less then one week of sticking to this diet my level went from 2.3 to 1.8. The second week it went down to 1.7. The third week I got lazy and didn't follow it like I should have and it shot up to 2.4. I have a blood test scheduled for Monday. I plan on sticking to this regiment and hopefully it will show a reduction. My doctor was very open minded to the idea so we'll see what happens next week.
A bit of good news is that the CT scan I had on Tuesday showed stable - no change.
Until I have more to share I remain strong, positive and ready to fight.
Keep on Dancin'
No chemo yesterday. It seems my bilirubin levels were up and I didn't have the energy to argue. If you remember from my post last month I had the same problem. For those not familiar with what bilirubin is here is some info:
Bilirubin (formerly referred to as hematoidin) is the yellow breakdown product of normal heme catabolism. Heme is found in hemoglobin, a principal component of red blood cells. Bilirubin is excreted in bile and urine, and elevated levels may indicate certain diseases. It is responsible for the yellow color of bruises, the yellow color of urine (via its reduced breakdown product, urobilin), the brown color of feces (via its conversion to stercobilin), and the yellow discoloration in jaundice.
In a nut shell high bilirubin can be an indication of liver damage.
The doctor called me this morning to see how I was ( I think she was more interested in how I was doing mentally rather then physically since she knows I hate changes in my schedule). Although she said I just may have a higher level then most, she still needs to be safe and have it checked out. I have an appointment Tuesday with a Liver Specialist to get a second opinion.
I did share my thoughts on it and thankfully she is open minded and listened to what I had to say. Three weeks ago when my level showed high I did a little research on how to reduce the levels. Basically lots of fruits and veggies, orange juice, low fat meats and no fired or spicy foods. Very similar to a diet you would see for gallbladder problems which makes sense since the liver and gallbladder work together. In less then one week of sticking to this diet my level went from 2.3 to 1.8. The second week it went down to 1.7. The third week I got lazy and didn't follow it like I should have and it shot up to 2.4. I have a blood test scheduled for Monday. I plan on sticking to this regiment and hopefully it will show a reduction. My doctor was very open minded to the idea so we'll see what happens next week.
A bit of good news is that the CT scan I had on Tuesday showed stable - no change.
Until I have more to share I remain strong, positive and ready to fight.
Keep on Dancin'
Subscribe to:
Posts (Atom)
