Brain mets...a plan, (T/X now, rads later?)

[hutchibk]

9 AM today: My oncs started leaning back towards WBR over the weekend, (much to my dismay) due to deeper consideration of my brain mets. I thought we were going to do targeted Linac of the 3 spots and add Tykerb/Xeloda. But, the rads onc says that that is not the way he would go after further consideration, and he said that it is a really gray area with no easy answers. He would love for targeted rads to be an easy answer, but he doesn't believe that it is that easy. He believes that my brain is more than likely "peppered" with other little punctate spots that are beneath MRI detection just now. My med onc agrees with this assessment and they both think that WBR with Tykerb/Xeloda is the most prudent way to approach it...

Noon:30 PM today: I called the rads onc and expressed my fear about WBR and the long term cognitive effects. He said he understood. Then in convo I wondered out loud if we would lose any ground by waiting a few weeks (6-8 weeks) and getting started on the Tykerb/Xeloda first...then MRI again to see what it might gain us. He started getting on board with the idea, saying that he didn't expect that it would lose us any ground and that he expected in that amount of time for the 3 mets to only grow at most by about 10%, if they grow at all. And that that amount of time might be able to reveal to us whether or not more punctated spots start to show up. I started to feel really good about the idea and called the med onc to talk about it. He is leery of the idea at first, worries that we could lose ground with the brain mets, and is not ready to be too confident about Tykerb just yet, as it is so new... he is cautious, but is willing to give this plan a go, and says he would be surprised, yet pleasantly so, if we see some shrinkage from the T/X - as well as no new spots by that time. He is reluctantly on board.

9:00 PM tonight: I am all over the map about this. One minute I love the idea of giving it some time. The next minute I feel as if I might be making a HUGE mistake.

Oh, and my PET last week revealed that we have had slight worsening (while on taxol/herceptin) of the other mets in my mediastinal and neck, and that there is a new small met showing in the chest.

Yuck, yikes and HELP. I am at such a loss here. I thought I had a reasonable idea, and now I am second guessing everything beyond belief. I suppose I can live with it for a week or two, get into the Tykerb/Xeloda routine, and in the meantime do some more reasearch. Maybe see a neuro-oncologist? I am not too far from MD Anderson, but they don't do second opinions. They make you sign off from previous docs and sign on with them. I'm not willing to do that.

Any thoughts or ideas from you lovely ladies? Did any of you hear a similar theory from your docs? Is targeted radiation in this circumstance just a never-ending game of wack-a-mole? does WBR really work and does anyone ever escape the cognitive problems?

[Zoid]

Hi there,
I had mets to liver and brain 2 yrs after stage IV breast cancer. I had herceptin and navelbine for the last 2.5 yrs, but the tumors had started growing again. I had full-brain radiation since the oncologist said that the three tumors were probably just the ones we could see. After radiation, I started on Tykerb and Xeloda (3 mo ago). Based on scans 6wks ago, the T/X combo is shrinking all of the tumors. One in my brain is gone and the other two are significantly smaller.

Hope this helps,
Susie

[Esther]

I'm in a similar situation as you. I had 2 new lesions treated this year, one via Gamma knife, and one via frationated rads.

The rec of the neuro-surgeon and the rads onc. was to do WBR. However, after discussing the possibility of Tykerb, they agreed that a waiting and allowing the tykerb a chance to work was a good solution. They said if Tykerb was not in the picture, they would have continued to rec. WBR.

You can always do WBR later.

This is your personaly decision to make. But I would go with the targeted treatment for now, and start the Tykerb. It has shown the most promise in preventing new lesions from forming.

[hutchibk]

Thanks Esther and Zoid - every bit of info helps. I meet with my onc tomorrow and I plan to have a "research paper" written to present to
him, LOL.

I am just not ready for WBR at this stage in the game. I know that the fact
that we saw a new chest spot and worsening of an existing chest node and the neck spot (at C3) is part of what is complicating this for them and the plan. But I still think we can do targeted rads, Ty/X and buy some time to see what that yields us.

[bailey]

I wish I could be of more help although I have not started tykerb or xeloda yet - in the process of delivery to my home. I have been on Herceptin since 2003 and just a few months ago they found 2 very small lesions on my lung as the 2002 BC spread to lung and liver in 2003. So not the t & x and we'll see how it goes.
B

[julierene]

I asked my onc specifically about some protective notions of the tykerb/xoleda and he said that it didn't cross the blood brain barrier. (I feel like I get dizzy a lot more frequently, and headaches.) Is there something that is showing that it is?

[bailey]

That is weird because everything you will read about tykerb will tell you that it does cross the brain barrier - that's what is so great about tykerb to hopefully protect the brain from tumors. I have not heard of having headaches with tykerb/xeloda. The biggest side effects I know of are diarhea, nauseau, some vomiting,fatigue, rash on hands and feet - if you look up the drugs you will beable to see the side effects for yourself. You should let your Dr. know about the headaches because you should beable to get something for that. Also, sometimes it takes a few days till your body adjusts - do you have other side effects?

[hutchibk]

In my conversation with my doc on friday he assured me that Tykerb and Xeloda do cross the blood brain barrier. But we don't know if the Ty will eradicate the mets that we see. We have to go after those another way and hope that the Ty helps protect the brain from future mets.

[Esther]

When I spoke with Dr. Pegram at UCLA, he specifically said that for responders the Tykerb had a very high rate of success in preventin new brain lesions, and that the success rate in decreasing the size of existing lesions was in the single digits.

So some responders even see reduction in size in lesions already there. Tykerb and Xeloda do cross the BBB, that was evident in the clinical trials. You can do a search and get access to the trial results for further evidence.

[Lolly]

Here's an excerpt from GSK's web page on the data from Tykerb trials released last summer, along with the link to the site:

Tykerb Activity in Brain Metastases Associated with Breast Cancer
http://www.gsk.com/ControllerServlet?appId=4&pageId=402&newsid=843 (http://www.gsk.com/ControllerServlet?appId=4&pageId=402&newsid=843)
"...analysis from the EGF100151 study (Late-Breaking Abstract) suggests that Tykerb may play a role in decreasing the occurrence of brain metastases. Indeed, in the interim analysis, only 4 patients experienced CNS relapse in the Tykerb -capecitabine arm versus 11 in the capecitabine alone arm.1
Another study (abstract #503) being presented today at ASCO provides preliminary evidence suggesting that Tykerb may be effective in treating brain metastases associated with breast cancer. The Phase II trial was conducted by investigators at the Dana-Farber/Harvard Cancer Center, the Universityof North Carolina, and Georgetown Universityand was sponsored by the National Cancer Institute’s Cancer Therapeutic Evaluation Program (CTEP). The trial evaluated Tykerb in 39 patients with ErbB2 positive breast cancer who had developed CNS metastases while on trastuzumab. As reported in the abstract, two patients achieved partial response as measured by RECIST, a linear measure of solid tumors. An additional five patients achieved stable disease for ≥ 16 weeks. Volumetric analysis, which is a more precise three dimensional measure of tumor volume, was performed in 20 patients. Eight of the patients (40 percent) showed volumetric decline in CNS lesions – five patients showed ≥ 30 percent volumetric decline and an additional three patients showed 15-30 percent volumetric decline. Although the trial did not demonstrate the hypothesized level of activity as assessed by RECIST, the study concludes that there is sufficient evidence of preliminary clinical effect to suggest that Tykerb can penetrate the CNS.2 The most common adverse events with Tykerb were diarrhoea (grade 3, 21 percent), fatigue (grade 3, 16 percent), and rash (grade 3, 5 percent).

Following the encouraging results from the CTEP trial, Tykerb is now being studied by GSK in a large, international, randomized Phase II study designed to assess the impact of Tykerb monotherapy on brain metastases by monitoring lesions in the brain using magnetic resonance imaging, a volumetric measure."