New Drug, still waiting for Tykerb

Dace · 10-02-2006, 02:57 PM

Hello, I am writing I guess because I need encouragement. I am 34. Last year I was diagnosed with Breast cancer, had a lumpectomy, chemo and radiation. I finished all of that in January of this year. In April I found a red spot on the same breast. It turned out to be IBC so in May, I had a Mastecomy. Three weeks after my mast, I found another red spot and it too turned out to be IBC. My first onc told me there was nothing else they could do, so I went to a new onc at The City of Hope, where she started me on Gemzar/Carboplatin. It seemed to be working, as the red spots have gotten better as well as the pain associated with the spots. But when I had my CT scan, I was told that the lymph nodes appear to have gotten bigger, which is discouraging. When I saw my onc at COH she said she didn't see any difference in the size of the lymph nodes but chnaged me to Navelbine until she gets the results back from her radiologist. Ideally, she would like me to start on tykerb, but as yet they do not have it available and probably won't for 6 months. I am not sure what to do, wait the 6 months and try different drugs in the meantime, or find someplace that has the tykerb clinical trial.
Dace

Joe · 10-02-2006, 04:17 PM

Dace,

There are several sites in California presently recruiting for Tykerb. Sandy H. on this board who has IBC has experienced great results so far.

Regards
Joe

California

Lapatinib EAP Call Center, Burbank, California, 91505, United States; Recruiting
Raul Mena 888-489-5372

Lapatinib EAP Call Center, Long Beach, California, 90806, United States; Recruiting

John S. Link 888-489-5372

Lapatinib EAP Call Center, San Diego, California, 92120, United States; Recruiting

Han Koh 888-489-5372

Lapatinib EAP Call Center, Gilroy, California, 95020, United States; Recruiting

Ronald Yanagihara 888-489-5372

Lapatinib EAP Call Center, Santa Rosa, California, 94503, United States; Recruiting

Ian Anderson 888-489-5372

Lolly · 10-02-2006, 05:12 PM

Dace; It seems your cancer must be Her2 positive for your oncologist to be considering Tykerb, so I'm wondering why Herceptin isn't being offered while you wait for Tykerb availability? Herceptin/Navelbine is a very effective combo, and a friend of mine with Her2 positive IBC was stable for many months on this combo.

<3 Lolly

Sandy H · 10-02-2006, 07:23 PM

Dace it sounds like you have skin mets when you say you have red spots on the skin. I have IBC (5 1/2 years now) and am doing the Tykerb/Xeloda (both are oral pills) and have had amazing results! Have only done it for 6 weeks and my chest is all clear, no itching or burning. Have not had mets any where else. The oncologist is thrilled over the quick results. I would push to find this trial close by. It sounds like if you are getting treated at City of Hope then, you should be able to find this trial close by. I wish you well and if you need to e-mail me please do. hugs, Sandy

Dace · 10-03-2006, 08:49 AM

Hello all,
Joe, thank you for the information. I called that number this morning and the operater I got told me she didn't think that the expanded access was for people with IBC, but she was sending me out a packet and my oncologist could look at it and call if she has questions. Are the names you gave me people that I should contact?

Lolly,
I did herceptin after radiation, and had progression while on it. So the City of Hope onc discontinued herceptin because she didn't see any reason to continue to compromise my heart and it wasn't working.

Sandy H,

i have so many questions, I very well may email you. Thank you!

Patty H · 10-04-2006, 03:59 PM

There are no extended tykerb places in Indiana. But the the lady I talked to on the phone said I could drive 3 hours to another state to get started on it. They are going to open up one in Indianapolis and when they do I could switch over to it. So if there is one with in driving distance, you only have to go every 3 weeks. Patty H

Christine MH-UK · 10-05-2006, 04:42 AM

Since GSK also has an ongoing trial for tykerb and IBC in some places, it may be that they are being a bit careful about putting IBC into the EAP for all places. However, since the nearest trial for tykerb and IBC to you seems to be Seattle, that might change matters.

If anyone is interested, the info on the tykerb/IBC trial is: http://www.clinicaltrials.gov/ct/sho...105950?order=2

Good luck,

Christine

PamP · 10-05-2006, 07:14 AM

I am also waiting to be eligible for tykerb. I have bone mets and according to my oncologist I am not eligible for a trial. But he also said it might be fda approved & available to me .... hopefully within the next several months. Anyone have any info on that?

I also have ibc, dx in 2001. Currently i have been on xeloda/hercpeting for about 13 months. on this treatment my bone mets have remained stable, but when I can get tykerb my doc will add that also.

Joe · 10-05-2006, 07:39 AM

GSK has applied to the FDA for approval. The drug had been given "fast track" status by the FDA which guarantees an answer within 6 months. So it may be approved by March 2007.

Regards
Joe

Dace · 10-05-2006, 01:47 PM

Well, although I am treated at City of Hope, I am a Kaiser Patient. I found out the other day, that Kaiser has the expanded access clinical trial. So I met with the clinical trial person today, and depending on the outcome of my MUGA scan, I am set to start on the 19th! Please pray my MUGA is better than the last one...

lexigirl · 10-05-2006, 03:27 PM

Dace,

Great news! Prayers being said for your heart to be strong and for the Tykerb to be the drug that will kick this cancer's butt!

Hugs and Prayers,
Lexi