lapatinib

[pkw]

Hi all -

I'm stage IV , diagnosed May 2004; chemo, mastectomy and radiation in 2004. Brain mets in 2005 and 2006. I have been on Herceptin for nearly three years. My CA-125 has gone up; I had the full round of scans yesterday and am waiting for the results. I think my doctor may recommend lapatinib. I would appreciate comments regarding your experience with lapatinib - side effects, affect on tumor marker, etc.

thank you!

PK

[hutchibk]

HI PK - I am a 5 month lapatinib(Tykerb)/xeloda patient. I was DXed in April with three 8-9mm brain mets, 5 'punctates' (pin prick size mets) and a bone met at C3 in my neck. My CA15.3 markers were slowly but steadily inching up, capped out at 45 when we started my Tykerb/Xeloda treatment. My tumor markers plunged in the first 5 weeks and are now stable in the 9s. We MRIed my brain mets and neck bone met at six weeks and they had all shrunk by half. We did PET/CT scan yesterday and as of today, I have no evidence of any cancer activity anywhere in my body. I have had a tremendous response to Tykerb/Xeloda. I know that some do not have as good a response. I did not respond as well to 20 months of Trastuzamab/(Herceptin) as many have. Each person is different, and I am so very grateful for lapatinib/Tykerb. Best of luck if this is the direction you doctor suggests for you. I am a true believer!

You can find a lot of info about side effects and solutions on the Tykerb/Herceptin forum on this site... we post there regularly! Feel free to ask any questions that you might have!

[pkw]

thank you! that is very encouraging. did you have Gamma Knife for your brain mets? I've had that twice. each time, they've given me a little 'Gamma Gecko' pin. the pins are cute, but I don't want any more of them!

PK
Portland, OR

[hutchibk]

I opted to not do any targeted radiation at all until we saw what the Tykerb/Xeloda would do on it's own. And the Tykerb/Xeloda took care of my brain mets totally on it's own. That is pretty powerful stuff I would say! So, no, no Gamma for me (yet, maybe never, cross my fingers). Best of luck.

[micheleu]

PK, i'm on tykerb. I found the biggest side effect is diarrhea. I found if i don't drink fountain pop i do pretty well.

[Lolly]

Hi PK; I was on Tykerb/Abraxane for 4 months this summer, and diarreah and rash were the main problems for me. The rash just has to run it's course (about 6 weeks), the diarreah was controlled well with Immodium which I only needed once or twice a week. Be sure and take the Tykerb on an empty stomach, and wait an hour before eating, as the side effects are supposed to be worse if taken with food.
Best wishes to you, and keep us posted.

<3 Lolly