Brain Mets came back -- Help Needed - Page 2

krisvell · 01-27-2011, 05:55 PM

Grace,
I am happy the Gamma and Xeloda are working for you. It gives me great encouragement as that's what my oncologist recommends for me. Sending prayers and support you are healthy.
Kris....

Kris...

Rich66 · 01-27-2011, 11:16 PM

Quote:

Doctors are not Gods and I refuse to treat them as such.

Ah...if I could put it on a flag.

GracePang · 01-29-2011, 10:05 AM

I saw my onc yesterday and asked again about Tykerb. He finally agreed to add it to Xeloda. However, he said he has to cancel Herceptin, since there is no evidence that the two together is safe or not. Nobody here in our local hospital takes Tykerb and Herceptin together and he is very uncomfortable to use them. What can I say. I already gave him the info from SABCS summary about their Phase III study. No matter what, I will start Tykerb along with my 4th round of Xeloda. I am thinking that if I tolerated Tykerb well, I may push him adding Herceptin for me. Thank you all for your support. Love, Grace

Joan M · 01-29-2011, 10:31 AM

Grace,

A few days ago I heard an online discussion with three oncologists. One of the oncologists, Eric Winer, with Dana Farber, Harvard Medical School, spoke only about HER2. Dr. Winer is well known in this field. He said that Herceptin and Tykerb work very well together and should be given together even if a patient progresses while taking Herceptin. Perhaps you should let your onc know about this. I don't know why your onc is "uncomforable" about giving them together. Please ask him why.

During the discussion, I asked Dr. Winer whether the standards for treating breast cancer as put out by the National Comprehensive Cancer Network (NCCN), indicated this combination. He said that he didn't know. The last time I looked, which was not recently, the standards did not support Herceptin and Tykerb, but only Tykerb and Xeloda if a patient progresses while on Herceptin. And often doctors and insurance companies follow those standards.

Dr. Winer said that Herceptin and Tykerb are not FDA approved in combination. But Tykerb and Xeloda are.

The NCCN standards were posted recently to this board.

Joan

Jackie07 · 01-29-2011, 05:41 PM

Thanks for the update, Grace.

Be sure to check the Tykerb/Herceptin Board and take preventive measures on the side effects of Tykerb. I've seen some members who're able to tolerate as many as four pills...

Sending you good vibes.

Leslie304 · 01-30-2011, 01:34 PM

Hi Grace,
I became metastatic in November with four mets to my brain! (happy 50th birthday to me!) After wbr I was put on Xeloda/Tykerb/Herceptin and contine that regimin still. My onc also feels that over with chemo drugs is not a good thing, but this was the protocol she recommended after the dx. I often wonder if I had stayed on Herceptin if the cancer wouldn't have metastisized. I'll never know now. Now I pray that they can control/freeze what is there. After wbr a scan showed the tumors had significantly decreased in size and I'm wondering if gamma knife or targeted radiotherapy would be an option. When first diagnosed they said it would not be beneficial because the tumors (4) are in four separate places, not near eachother. so we just let them sit there? Doesn't make sense to me.
Good luck to you. I pray things remain stable.