Tykerb/xeloda Update

[IRENE FROM TAMPA]

I had my second set of scans this week since starting on the compassionate use of Tyker/Xeloda combo.

My echocardio measured 55% this time.

My CEA is at 3.4 (within normal range)

My PET scan showed an increase in the uptake in my tumor of 7.4 up from 4.7 of last scan.

On talking to my onc. he mentioned that since I had to switch Imaging centers due to changing our Insurance co. - there could be a little difference in their machine. At looking at the film he did not see an increase in the size. I was disappointed in the way they did their report at this center. They did not report a size in tumor just the SUV which means the standard uptake value to the tumor (how much it lit up showing increase in activity and cell division)

Upon calling the Imaging center myself they said that the radiologist only reported one tumor (I had two) so it looked like one was gone. This is a good thing but I am very confused now. When I called my oncs. office back to confirm what we had discussed, he had already left the office and is on vacation for the next week. I will check with him upon his return. VERY good thing if one of the tumors is infact gone, but it worries me that the uptake increased in the bigger one. My CEA is good and I have always been sensitive
to that test.

Another good thing is that there are no other tumors showing anywhere else which is always a big concern for me so at present looking stable.

I am feeling good. Still having the hand/foot thingy and occasion bouts of stomach issues but much of that has been resolved since we lowered the dosage to 2650 mg.

I have started experiencing muscle spasms/cramps along my waistline on either side of my hips and also in my hands. I also get them on the left side of my neck. I had severe legs spasms when I was on Herceptin and we are thinking this is from the Tykerb. Something in my sytems and this type of drug must be giving me this reaction.

So that is my update for this 6 weeks period. I am scheduled for another set of the same in another 6 weeks.

I guess I could say that all this was good news, just have to confirm my confusion about the Pet report to put my mind at ease.

Good luck to everyone trying to get on this trial. My onc. thought that Food & Drug would be approving Tykerb sometime soon. Hopefully so.

Take care