Responding to Lindaw's question on 9/14.

[Sandy H]

I have been at camp so just read the post tonight. I thought I would start a new post for everyone to see. Wednesday will be 3 weeks on the Tykerb. I did report the first week the skin mets looked much improved. On day 9th of taking Xeloda I had severe diarrhea. My potassium dropped, I was shaky, my heart was fluttering and I was weak. I called oncology and was told to stop the Xeloda, go on a clear liquid diet with lots of gatoraide until the diarrhea stopped. I saw my oncologist today and he was impressed at how much the skin mets had disappeared!! He told me to start the xeloda again on Wednesday at 2000 mgs. instead of 3000 mgs. He said they both can have the same side effects with diarrhea. For me its too much. I am praying that I can tolerate this low dosage if not I don't know what he will do. I can scanned again next month at 6 weeks. That is the only side effect at this time. I am curious as to how Irene in Tampa is doing. I hope she didn't have this problem traveling! hugs, Sandy

[chrisy]

Sandy, thanks for the update - I was hoping you'd keep us posted! I'm so glad you are seeing improvement continuing. Take a deep breath...and good luck with the lower dosage on Xeloda. Hopefully your body just needs to adjust.

You're a real trailblazer, and it is exciting to be able to follow it with you. Makes me glad GSK FINALLY applied for FDA approval today, and that women may not have to fight as hard as you did just to get the drug and can focus that energy, as you are, on fighting the cancer!

Take care
chris

[lindaw]

Thanks Sandy


I was wondering where you were. I had my last rads today amnd am very sore. Am hoping to get the Tykerb next month. Funny as I had the rad anothe patch developed on my shouder. Its as if it found a refuge from the rads.Are your skin mets still improving or have they stabilized. No skin rash?

love
Linda

[Sandy H]

I still have a rash but it is not itching, burning or bright angry red. It is light purple, pink, broken veins, in different areas. This can mean stable disease or damaged tissue. I did have a few small nodules around the port but those have decreased in size and flattened out. My oncologist was mostly concerned about the port area. We are both very please with the results thus far and its only been 3 weeks!! When I had my 5 rad treatments that is what happened to me the skin mets went out of the radiation field up my neck and down my breast bone and onto the other side of my chest. They know how to play the game!!! I will keep everyone posted it may be a few days before I respond because I am a very busy person. If it is a few days then I will post under a new thread so everyone sees it. This is such an active board that a few days away and its like weeks which is wonderfull!! Wishing you all well, hugs, Sandy

[Shell]

Sandy-

I'm glad you contated the office right away w/ your side effects so they could tell you to go off the xeloda. And I hope the lower dose helps.

I have to say after 5 months on xeldoa w/ tykerb, when my symptoms of diarrhea get worse are totally random. The H/F symptom is usually worst in my off week of the xeloda, and I can plan for that. But it's hard to anticipate the other, although for me it usually gets resolved pretty quickly w/ immodium.

Continued luck with it,
Shell

[Joy]

Sandy, i appreciate you taking time out to keep us posted on your pioneering with tykerb. I'm also glad to hear that you are busy and LIVING your life. Also, such great news about your pup. Thanks for all you do for us.