Tykerb longer than a year?

Faith316

My oncologist told me this week that even though my Xeloda will be ending after December, that I would most likely stay on Tykerb for a long time -- maybe even indefinitely.  Anybody else been on it for longer than a year.  He also is going to increase the dosage of my Tykerb from 1250mg daily to 1500 mg daily when I stop the Xeloda.  Anybody else have it increased?

JeninMichigan

I believe my onc is going to stop my Tykerb after a year.  She said the results are not in yet on just how effective Tykerb is versus Herceptin.   However, she thinks the two of them combined are really a great combination.    I am only on 750 mgs.  I was on 1000 but has really hard times with heat sensitivity (so much that warm showers were painful).    Do you tolerate 1250 mg ok?   Seems like 1500 is a lot.   It sounds like maybe Herceptin did not work for you?   There are lots of newer HER+ drugs in trials right now so I think that something else will be around the corner for us that might be better and easier than Tykerb.

I know of a few gals (earlier stage than I... like you) that are on Tykerb for an indefinate period of time.   If you can handle it, I would stay on it!

Jennifer

Faith316

Herceptin did not work for me.  My original dx was IDC.  I took AC x4, then 12 weekly Taxol with concurrent Herceptin, then was only on Herceptin.  Then, during my radiation and while I was still on Herceptin, my IBC started.  I do have a lot of hand/foot syndrome and diarrhea, but don't know how much of these side effects are from the Xeloda and how much from the Tykerb.  Not pleasant and rather painful at times, but if it keeps me cancer free, I can deal with it.

What symptoms does your heat sensitiviy cause?  Showers are not a problem for me, but for awhile I was trying to soak my feet in warm Epsom salt water but it seemed to make the swelling and redness on my big toes worse, so I quit.  They are no longer as red and swollen but they are still very sore and somewhat oozing and bleeding on the sides where the nail meets the skin.  Just wondering what problems the heat causes for you.  Thanks for your reply.

JeninMichigan

Faith

 I am pretty sure your hand and feet issue are from the Xeloda.    I don't have any of these issues with Tykerb.    The heat sensitivity was if the sun was too warm or the bath or shower water was warm, it would feel like intense burning/itching on my legs and arms.    When I would be outside in the sun, it wasn't a matter of sunscreen it was the heat from the sun.   The reduced dose took care of that.  The only other side effect from Tykerb is a rash ... kinda like pimples... on my arms and my fingertips split open.   I have had a few problems with my nails getting little infections and two ingrown toe nails I had to have operated on.   The diarrhea can be from both.   I had some when I started Tykerb but have it all straightened out and no more problems.   The fingertip issue is my biggest beef but truly it is not unmanageable.   I have learned to wear gloves when I work outside and to keep my fingertips very well moisterized and my nails filed extremely short.

 I am sorry Herceptin did not work for you.   

Jennifer