Lapatinib

I would like to hear some experiences with Lapatinib.
I live in Germany and it is not authorized. There are some trials in which is allowed, so I would thank anyone who could give me some feedback about her experiences with it.
Thanks,
Leticia

Leticia,

There is a person on the Clinical Trials board who posted on February 18th. You may wish to contact her.

Regards
Joe

Hi Leticia,

My name is Martha, and I am currently is a study using Lapatinib along with weekly infusions of Herceptin. The drug was called GW572016, I was told by my oncologist not very long ago that it was given the generic name Lapatinib.

I'm not sure what it is your wanting to know exactly so I'll just give you a little bit of my progress on the drug. I take the pills everyday with no days off since I started more than 16 weeks ago. I was put into this study because I am stage four with Inflammatory Breast Cancer that is now in my lungs and standard treatment just was not working.

I get CT scans done every 8 weeks to check the progression of the cancer while on this drug, so far so good. The first scans came back and showed that two small tumors had gone away and all the others were stable in size. My second set of scans done about three weeks ago showed minimal increase of 7mm in one of the tumors and all others remain the same size. Even though there was a slight increase in my one tiny tumor they are going to continue to keep me in the study. They said that it was not a large enough increase in size to pull me out of the study becuase it's my best chance right now.

Back in September 04 they told me I had about a year to live, I'm sorry but I just don't feel like all I have is five months left to live. I'm a nursing student and continue to go to school in hopes of graduating in the spring of 06 if I can make it that long.

I guess the only thing that really bothers me about the study is all the CT, and Muga scans that I have to allow them to do on me, I know that can't be good for me. Like I said, I get them done every 8 weeks, but that's part of the agreement you make when joining the study. I am participating through Indiana University Hospital in Indianapolis Indiana here the US.

If I can answer any more questions for you please feel free to email me anytime. God Bless, and be well.

Martha

Dear Martha & Joe,
first of all, thank you very much for your help.

Martha, what I really would like to know is if it would be possible for me (as german citizen) to get involved in such a trial in USA.
There are 11 trials with Lapatinib in Germany (one of the them just 15 kms. away from where I live) but none accepts to reclute me because of my brain mets,
As far as I know, there are 3 places in USA where Brain mets would not be a problem to get involved in a trial with Lapatinib, that´s why I was wondering if someone who is already in such a trial could help me to contact the right person to send my medical reports.

Would it be possible for you to ask about it?? At the moment I am about to try an alternative methode to try to keep the growth of my mets stoped until I get into a trial, but in Germany will not be possible.

I am now on Navelbine/Herceptin weekly. I have mets in my lungs, abdomen and brain. According to the last scans (about 3 weeks ago) Lungs and abdomen are almost gone and brain is being stable since 6 months.

Please tell me if you think about a possibility to ask someone directly in where you are now or maybe somewhere else, so I can translate my reports asap.

Thank you very much for your help and please feel free to ask whatever you need.

Leticia

Hi Letitia

My sister is involved in a phase II clinical study of Lapatinib for breast cancer mets to the brain in Boston. Eric Winer at the Dana Farber Cancer Center is leading the study in the Boston area -- two other oncologists at Beth Israel Deaconess Medical Center and Massachusetts General Hospital (both also in Boston) are also participating with Dr. Winer. There is also a doctor in the Washington, DC area participating.

My understanding is that mets in the brain have to be progressing to be eligible for this study. When my sister was scanned 4 weeks post whole-brain-radiation, she was not yet eligible, because the MRI showed shrinkage to her 4 small brain lesions. A followup scan 6 weeks later showed further diminishment on 3 lesions, but a 4th had begun to grow again, which made her eligible for the Lapatinib. She will start her 8-week followup scans at the end of April.

We met another young woman who is doing well in the trial (12-16 weeks into it). My sister is tolerating the Lapatinib pills well after minor initial physical adjustment -- her headaches remain the same so far -- not better, not worse -- so it's hard to tell yet how well it's working for her.

Here's the link to the U.S. Nat'l Cancer Institute clinical trial:

http://www.nci.nih.gov/search/ViewClinical...earchid=1543565

Good luck and God bless you.

MA

Dearest Leticia,

I am not sure about the brain mets but I will be sure to ask my oncologist when I go down to Indianapolis this Thursday.

Maybe they can send you some information or you may be able to call them about it. I will be sure to get back to you.

I'm going to pull this up and print it off for them while I am there so that they can read it as well.

I'll post you a message after my appointment.

Dear Leticia,

As I promised I mentioned your situation to my oncologist at the IU Cancer

Research Center. She told me that at this particular facility they are not

participating in any trials that involve brain mets. Your best option would

be to contact directly the three facilities that you have found on your own

that are participating in brain mets trials with Lapatinib. Since it is the

drug company that pays for all the expenses of the study, all you would

have to worry about is the cost of living while in the study. Once you

contact the people running the studies, they will be able to tell you

about your qualifications as a non citizen of the US. I would get on this

away becuase different arms of the studies have deadlines and they

close. Once this happens, no one is allowed in. The study I am in is now

closed and no one else is being let in. I was one of the last to get in.

I believe there is less than 36 in the country participating in the same arm

of the study that I am currently in so I am very fortunate.

I hope this helps you in some way, please keep me posted.

Best Wishes,
Martha

Dear Martha and Think Pink,

thank you very much for your help.
I will try to contact directly the people in the other trials.
Sorry it took me too long to read what you wrotte, but I was trying a Hyperthermie treatment in South Germany.
I still don´t know if it worked, I will have some scans in June and I will report about it.

Thank you again for your help.

Leticia