Anybody on Herceptin+Tykerb without chemo?

Julie2 · 03-25-2008, 03:52 PM

Is anybody successfully treating their mets with just Herceptin+Tykerb without chemo? I just want to find out how effective is this combo.

Thanks,
Julie

SoCalGal · 03-28-2008, 06:56 PM

I'm on herceptin and tykerb for the last 12 weeks. It's helping but not enough so I just added in avastin. Next week I'll add zometa.
Flori

alw · 03-29-2008, 06:57 AM

Flori (and any others),

I was wondering if you could tell me how you and your doctor were able to come to the decision to use Herceptin and Tykerb together. Also - how were you able to get insurance approval?

My sister is currently on Tykerb-Xeloda-Zometa and would like to add in Herceptin - but her doctor is not convinced. And of course insurance is a whole different issue.

Since she has already been on Tykerb for more than a year, she is not eligible for any of the trials combining Tykerb and Herceptin. And, since there is some evidence that the Xeloda is helping to keep the brain mets at bay, she does not want to stop Xeloda.

Thanks in advance for any help and best wishes for continued healing.

Amy

Barbara H. · 03-29-2008, 08:24 AM

Go to my earlier posts. I was able to reach NED in 2004 from my mets for over a year and a half just from Herceptin. At the time I had mets in my brain, lungs, skin, liver, and nodes. I did need brain surgery. A year and a half later they appeared in my bones. Those are the hardest for me to treat, but are currently responding to the Herceptin MCC-DM-1 trial. It is important to note that when I developed breast cancer in 1998 (HER2 ER, PR neg.), Heceptin existed and I requested it. Unfortunately, Herceptin was not available to me then. I went six years before I developed mets.
Best regards,
Barbara

Julie2 · 03-29-2008, 09:27 AM

Hi Barbara,

I have been following your profile since long time and it gives lot of hope.
I am very inspired the way your mets were controlled with just Herceptin. I always wonder why Herceptin is such a miracle for some and not so for others. Will you be able to share with us your tumor profile? Is it a low grade tumor?

Thanks,
Julie

SoCalGal · 03-29-2008, 09:29 AM

A doc at UCLA gave me a consult and he explained his theory to me saying that if you are taking tykerb and it is serving as a partial road block but some cells are still thriving then you should not discontinue it but add another road block to help - in other words add herceptin. He felt that the two worked well together - the old synergy concept. So that's what I'm trying - plus I've just started Avastin. Another block to blood supply for the tumors. I hope this is making sense. I started this whole ordeal on Tykerb/xeloda and never stopped the tykerb. Insurance approved the herceptin for the her2 status and I think once you are on something they do not "take it away" but who knows. They did not approve the avastin but I'm on some kind of a drug company supplied deal until my insurance gets up to speed on the avastin.
Flori

Barbara H. · 03-29-2008, 10:54 AM

Hi Julie,
This is the report that I received July 9, 1998:
Invasive ductal carcinoma, at least 2.0 cm (tumor present in fibrous tissue over a 7 cm diameter area, moderately-differentiated. E/R and PR negative. The deep margin is free of both invasive and in-situ carcinoma. Extensive lymphovascular invasion is present, including dermal lymphatics. DCIS is present, including solid, comedo and micropapillary subtypes. In-situ carcinoma is seen in association with invasive tumor, and comprises approximately 20% of the invasive tumor. Metastatic adenocarcinoma involving seven of nine lymph nodes with extrandodal extension. At the time there was no mention on the report of HER 2 positve. A few years later my oncologist informed me that I has HER 2 positive, but I never saw that additional pathology report. It is interesting to note that it took me six years with ER and PR neg to recur. That seems to be unusual with my profile. It is also significant that I responded so well at first to Herceptin. I wish it had continued working by itself. Thankfully, it did not allow it to return to the places of the original mets. My CT scans are currently only showing stable disease. Does anyone know how you can determine if you are NED in the bones. All my tumor markers are now currently normal.
Thanks,
Barbara H.

sassy · 03-29-2008, 05:02 PM

Barbara,

I believe a bone scan will tell if you have any activity in the bone.

Barbara H. · 03-30-2008, 08:34 AM

Hi Sassy,
Unfortunately, the bone scans also only show stable disease, and Genentech is now allowing me to get them every twelve weeks. Apparently, it takes a while for healing to occur that can be picked up by these scans. PET/CT may be the way to go, but they are not indicated in the trial I am on and I certainly do not want to include any more scans. Tumor markers are very reliable for me and I feel fortunate that they are currently normal.
Thanks for responding,
Barbara H.