Doc wants me in Tykerb trial...

[Steph]

I am new here, have visited a couple times and thought I have read others that are in the trial for Tykerb or Tykerb w/ herceptin. My Doctor wants me in this trial so we are moving forward with that. I am having a hard time wrapping my head around the whole idea of "no chemo" though. When I was first dx'd the doctors kept saying you need the chemo to kill the cancer but now they are saying they don't want me to have it and that Tykerb can take care of it. I was also wondering how the others on this trial...if any are doing with it. I have read that alot of people want this drug and have been told that I am lucky my Doctor can get me in on this trial...just having a hard time understanding it all I guess.

Any input would be wonderful.

[Joe]

Steph,

Herceptin and Tykerb are a new class of drugs called "targeted therapies" ie: they do NOT kill anything, but rather interfere or inhibit signalling among the cancer genes. There are very few side effects.

Chemotheraphy on the other hand are the drugs that kill fast dividing cells. These are the drugs which make you lose your hair, induce nausea and other side effects.

No chemotherapy does not equate with doing nothing but rather indicates the type of drugs that you will receive.

Warmest Regards
Joe

[CLTann]

I have been asking my onc to let me have Herceptin without chemo. He said single agent Herceptin has not been approved. Where do you have the single agent trial?

Ann

Dx stage 1, triple positive, no node involvemnt, 1.0 cm ductal, mastec. No chemo, no radiation. Arimidex daily since dx, sept 05.

[Sherryg683]

Steph, are you stage IV? I thought the only way you could get on the Herceptin w/Tykerb trial is if you were stage IV and had failed on other forms of chemo. You said you haven't had any chemo..wondering how your doc is getting around that. I want to get Tykerb with my Herceptin but since I am in remission at the moment my oncologist said I would not qualify, at least not until it is released for use other than compassion. I am stage IV ..sherryg683

[Steph]

Sherry,

I am stage IV and I have been on chemo...gemzar w/herceptin.

[Sherryg683]

Tks Steph, I was wondering if your Doc had figured out a way to get around the loop. I really would like to start Tykerb with my Herceptin. I don't want to have to wait for a reoccurance. ...sherryg683

[fitztwins]

If offered the chance I would love tykerb. It supposedly breaks the brain blood barrier.

I am IIIC...I would go for it!

btw, It is a form of chemo!

I too am stage 4 and would like to know how your onc can get around the 'loop' as I would like to get Tykerb before mets in the brain...also to add with Herceptin in current tx. According to what I have read, Tykerb is current for compassionate use - so please if there is a trial going on, let us know! Thank you and good luck to you!

[Shell]

Steph-


I was in the xeloda w/ or w/out tykerb trial, in the arm w/out tykerb. When they broke the trial, I started taking it (in April). There are very few side effects with it (they come with the xeloda!), and as it is in pill form, it is very convenient.

Good luck with things,
Shell

[stina]

I am on a Tykerb trial. It is a single arm study. Tykerb is the only agent. I take three pills in the morning and three in the evening. I started the trial on June 21. I have not had any scans (other than a PET scan two weeks after I started) but have not had any other scans. I will have scans in 4 weeks.

Here is the trial #: EGF105084

It is for people with brain metastasis. I am treated in Nasvhille, TN. There are numerous studies around the country that are recruiting. If you go to clinicaltrials.gov and search the trial # it will locate it. If you have questions, let me know. I am happy to help anyone.

Here is my story:
Original Diagnosis: 25 yrs old, ER+, PR-, HER2+. Treatment: Chemo (Adriamyacin and Taxotere x 4). Bi-Lateral Mastectomy. Chemo: Taxol x 16) Radiation 35 Treatments

Metastatic Disease: 28 yrs old. 11/2004 to liver and bones (T-10, pelvis, 2 ribs and C-5,6). Treatment: Rads to T-10 and C-5,6 X 10 to each area, Weekly Chemo: Taxotere, Herceptin, Navelbine and Zometa-monthly. I continued on this path for 18 months. Brain Mets: Diagnosed 10/2005. WBRT 14X.

I had my C-5 vertebrae replaced with a titanium cage on May 17, 2006. The cancer had overtaken the bone and compressed my spinal cord. I then had radiation to my T-5 (10x).

The next step: Tykerb.

[thankful]

my daughter has brain mets. lapatnib did not work for her. she is on xeloda and herceptin and has been stable since dec. 05. had innumerable brain mets. liver mets. let me know how you are doing. prayer has kept my daughter going. love, and light gail, mother and advocate for 44 year old daughter