New to the site....Lapatinib

[Nicola]

Hi, my name is Nicola...

I was diagnosed with DCIS in 2004 and was told that it was caught so early that they considered it stage "0", which I had never heard of before, didn't know there was such a thing as stage "0". I had surgery to remove the microcalcifications then had a second surgery to re-check the margins, pathology report came back that the margins were clean. I underwent radiation therapy and have been having mammograms every six months since then with nothing showing up in the breasts.

On Dec. 1, 2005 I started with terrible abdominal pain, after being fully examined and having an ultra-sound they determined that it was a gallbladder attack. I went in to have the gallbladder removed and when my surgeon went in he was shocked to find cancer spread throughout my liver in both lobes, he immediately did a liver biopsy and it came back HER-2 positive. they also found cancer in my spine at the T8 & T9 vertebrae.

I am having a very difficult time understanding how stage "0" DCIS could have possibly metastasized. Apparently there was invasive breast cancer some where that was not caught.

The original plan was to attack the cancer through chemotherapy using the drugs Carboplatin, Taxol and Herceptin. I had a portacath put in on Dec. 16, 2005 and was scheduled to start chemo that very day but my onc called at the last minute with a change of plans and now wants to use Lapatinib, Taxol and Herceptin with Zometa given once a month. I am going in tomorrow to discuss Lapatinib which is still in clinical trial and to sign up for the trial. Hopefully this combination of drugs will be successful in putting me into remission. I am a little nervous about being on a clinical trial but willing to try anything. I was told that the only side effects of Lapatinib were rash and diarrhea and only occured in a small percentage of people. I am very anxious to get started on chemo but hate that I know very little about these drugs. I have done plenty of research and read about how wonderful Herceptin is but there isn't much info that I have found on Lapatinib.

If anyone is on this combination of chemo and can tell me anything about it I would greatly appreciate it. I am only 36 years old and lost my mother, aunt, and mother in-law to breast cancer so I know some of what to expect but things have advanced so much since then and I feel I am really behind on the latest treatment options. My sister directed me to this web site and I am so glad that she did. It is wonderful to be able to talk to other women who are going through this horrible ordeal and it already has helped me in knowing what questions to ask my onc.

Thanks so much for any help that anyone can give me.

Sincerely,
Nicola

[Tom]

Dear Nicola,

I am sorry to hear that you have found yourself in such a position, but I think you have reason to be quite hopeful. You have been blessed, in an odd sort of way, to have your disease in a time of wondeful new treatment options. I for one, would be tickled if I could get my Mom permission to use lapatinib. I believe this drug will be even better than Herceptin.

Lapatinib targets not only the same receptor site that Herceptin does, but also another very important one called VEGF. Lapatinib is referred to as a dual action tyrosine kinase inhibitor. This gives you twice the bang for the buck. VEGF allows the tumor to grow a new blood supply to feed itself (angiogenesis). So, you will have lapatinib shutting down the HER2 defect in the tumor, as well as it's attempt to provide enough blood to grow larger (HER1). I am actually jealous that you have been offered such a drug. It is not available right now other than in clinical trials. It is thought by many to be the next "big deal" in the area of targetted therapies, and will be used in those patients for whom Herceptin has stopped working.

Please keep this website informed of all that is going on with you, as we all need incouragement from time to time, and I think your story just might turn out to be one of great hope for all of us. Take care, and keep up your faith. These are amazing times in the world of cancer treatment.

Sincerely,
Tom

Nicola;

I too am so sorry that you find yourself having to deal with this awful disease. There is information on this site about lapatinib in other areas so just use the search engine. My understanding is that another plus with lapatinib is that it is a much smaller molecule than Herceptin and so also can penetrate the brain. Sounds horrible I know but I think it is wonderful to have a treatment that can affect any possible micrometastises anywhere in the body. Herceptin can't do this. I agree with Tom that we are so lucky to be Her2 positive at a time where there is effective treatment. Please keep us all informed with your treatment. God bless.

Cathy

Hi Nicola,

First, off let me say how sorry I am to here that you thought you only had DCIS, stage 0 and now you are facing metastatic cancer. Makes you wonder how you can trust the medical professional when there seems to have been a misdiagnosis in your pathology. However, don't loose faith in medicine, I concurr with others on this site that Lapatinib is probably the next cancer wonder drug and in the words of Dennis Slamon, founder of the her2 oncogene, lapatinib is more effective than herceptin against her2 bc. As others here have said, its also small enough to cross the blood brain barrier unlike Herceptin. So good luck to you; keep us posted on your progress.

[athena453]

Hi Nicola-

So sorry to hear of your recurrence. I am also sorry to say that I do not have any information to add with regards to lapatinib, but I have heard wonderful things.

I was dx this May at age 27, stage 3C, ER/PR-, Her2+++, 30/34 nodes.

I live in Yorktown, VA.

May I ask who your onc is? Just curious as I have heard about several in the area.

Arielle

[Nicola]

Hi Everyone,

Thank you so much for your words of kindness and encouragement and for the info on Lapatinib.

Made me feel pretty good this morning being called a "Trailblazer" as I get ready for my doctors appointment to discuss this clinical trial and treatment plan.

I will share every bit of information I get on Lapatinib combined with Taxol and Herceptin with all of you, and my progress as I start down this long road.

I feel so very blessed to have such good care givers and now to have a place to come to where I can relate and share with others that are going through the same thing.

I am currently going to the Virginia Cancer Institute, my onc there is Dr. Christopher Desch. He is supposed to be the top onc in the region, he is actually leaving the VCI and is going to be heading up a national cancer study but has assured me that he will stay with me even after he leaves the VCI. My onc surgeon is Dr. George Parker from Saint Mary's Hospital and my radiation doctor is Dr. Judy Chin. They are a wonderful group of doctors with the best bed side manner I have ever seen in doctors. I am very fortunate to have them treating me.

I will keep you all in my thoughts and prayers always, we will be triumphant in this battle no matter what, because what we experience will help others, as those that have gone before us have helped us.

Big Hugs,
Nicola