[IRENE FROM TAMPA]

Hello all -

I need feedback from my sisters and brothers.

As most of you know, my response for the last 13 months has been great while on this trial.

Since I had my hip surgery, my Bilirubin count has elevated to over 3 (norm being 0.2- 1.2 according to Quest Labs ) It has come down to 2.8 and as low as 2.4 last Monday) The problem is that I may be kicked out of the study because they do not want a liver failure on there hands. I can certainly understand their point, but we are all so dissapointed since I have been NED now for about the last 6 months. I have never responded this well on any drug I have been on.

While I was in for my hip replacement, I had several units of blood as well as plateletts. Was on Morphine, Percacet, Tylenol, etc. I did get yellow while in rehab but at present do not show any other signs of and liver ailments, other then the Bilirubin. My AST & ALT are within normal range. My Alkaline Phos. is elevated (175) but slowly coming down.

I just had my blood drawn yesterday and we were hoping it had lowered but it is 2.8.

I am so upset since if they do kick me out of study and I have progression it will just be more toxins through my liver and maybe not work as well.

My onc seems to feel that all of the years of chemo has put a strain on my liver. I have kept all of my records and before the hip surgery, I was under 2.

I was wondering if maybe all of this surgery has caused it to elevate, which I am sure at the time it did, but it has been 4 months now from the surgery.

My research co-ordinator is still trying to get me more time with the Genetech people - but I do not have much hope. Meantime, my scans are good for now.
But I do not think I will hold NED until drug is approved by F & D.

Any clue? Anyone having issues with their Bilirubin counts and what to do. They do not want me to be on any liver cleansers(do not know if they really work) and since my platelettes tend to stay on the low side, I have to be causious of what I eat also.

Hope everyone doing well and take care.