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

[Joe]

The FDA had already given Tykerb "fast track" status last year. Fast track means that the FDA will rule within 6 months of application. I believe that GSK submitted the application to the FDA in Mid-September, so it seems reasonable that the drug will be approved by March.


Regards
Joe

[Vanessa]

I am glad to hear that most of your results sound good. I know you will feel better when you are able to talk to your doctor. I am praying that he has more good news for you. I also have cramping in my hips when I have to do very much walking. I was wondering if that is from chemo or from the Herceptin.

[Sandy H]

Irene, that sounds good to me. I have been thinking about you and was going to e-mail you. I know how you feel when its not clear cut for us. At least, nothing is showing any where else and possible one less tumor. I am experiencing some hand and foot syndrome. One finger is peeling and a couple small cracks. I keep right after them. Putting lots of lotion on hands and feet. I wrapped my cracks at night with antibiotic cream and a bandaide. I make sure I wear gloves outside, gloves inside if I have to have my hands in water to wash something. I have noticed more numbness in my hands and drop things. When I wake up in the morning they are asleep. Oh well, guess its minor. Let us know what you find out when your doc returns. hugs, Sandy

[heblaj01]

Irene,
Ultrasound imaging of breast tumors may give you the information your are looking for & allow you to check at shorter regular intervals the effectiveness of the treatment without invasive procedures.
For accurate size measurement it is said to be quite good & with up to date equipment it will distinguish cured areas from active areas within a tumour location.

[Bev]

I missed it. I don't know if I even want to know what a hand-foot thingy is. Just more to worry on.

I hope your onc has all the answers to your questions when he returns.

Hope all your news is good. BB

[Joy]

I was so happy to see your update-thank you. I am the kind of person who wants real SOLID answers too. But from what you've reported it sounds quite good. I will continue to think happy thoughts for your next doctor visit.

[MJo]

Irene. I am sorry you are going through the frustration and stress that comes from changing health insurance. I think it's really cruel when we have to change imaging centers.

Vanessa. Cramps can come from chemo or herceptin or both. I have cramps in my rib cage. MJO