HER2 Support Group Forums - View Single Post - Skin Rash

Lolly · 01-14-2008, 04:46 PM

Tonya, I know you're devastated right now, but don't lose faith in Herceptin just yet. Although it hasn't been enough on it's own to keep recurrence at bay, many of us Stage IV'ers have found that it just needs that extra boost of a chemo added in to knock the cancer back. I've been Stage IV since January 2001 with skin and lymph node recurrences, and my first recurrence was treated with a combo of Herceptin/Navelbine. Complete response, No Evidence of Disease (NED), and Herceptin maintenance kept me NED for 2 and 1/2 years. Then 2nd recurrence and we had to add Navelbine again, for 6 months, and again I was NED with Herceptin maintenance for almost a year. Then another recurrence, Navelbine again, but since then I've had to be on continuous maintenance chemo along with Herceptin as I continue to have systemic disease in my lymph nodes plus this past year dealing with skin recurrence again. I've only recently stopped Herceptin as my onc wanted to try Avastin with chemo, and there's no data on interaction with Herceptin so we've decided to take a "Herceptin Holiday" for now. May be able to go back to it later.

My message is that Stage IV disease can often be kept within very manageable levels with the help of Herceptin, and now Tykerb, and our options continue to grow.

Do not despair, wait to confer with your onc, but be sure and bring up the subject of Herceptin/chemo combo's as there is pleanty of data out there to support that plan of action. If Tykerb is offered, that has also worked well for some of us.

Take a deep breath, keep your chin up, and keep us posted.

<3 Lolly

01-14-2008, 04:46 PM	#6
Lolly Senior Member Join Date: Aug 2001 Location: Oregon Posts: 1,756	Tonya, I know you're devastated right now, but don't lose faith in Herceptin just yet. Although it hasn't been enough on it's own to keep recurrence at bay, many of us Stage IV'ers have found that it just needs that extra boost of a chemo added in to knock the cancer back. I've been Stage IV since January 2001 with skin and lymph node recurrences, and my first recurrence was treated with a combo of Herceptin/Navelbine. Complete response, No Evidence of Disease (NED), and Herceptin maintenance kept me NED for 2 and 1/2 years. Then 2nd recurrence and we had to add Navelbine again, for 6 months, and again I was NED with Herceptin maintenance for almost a year. Then another recurrence, Navelbine again, but since then I've had to be on continuous maintenance chemo along with Herceptin as I continue to have systemic disease in my lymph nodes plus this past year dealing with skin recurrence again. I've only recently stopped Herceptin as my onc wanted to try Avastin with chemo, and there's no data on interaction with Herceptin so we've decided to take a "Herceptin Holiday" for now. May be able to go back to it later. My message is that Stage IV disease can often be kept within very manageable levels with the help of Herceptin, and now Tykerb, and our options continue to grow. Do not despair, wait to confer with your onc, but be sure and bring up the subject of Herceptin/chemo combo's as there is pleanty of data out there to support that plan of action. If Tykerb is offered, that has also worked well for some of us. Take a deep breath, keep your chin up, and keep us posted. <3 Lolly __________________ Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation. Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.