Well, now I know why my markers were going up but scans looked stable; MRI showed Mets in my brain while PETScan didn’t pick up the brain lesions. I will be seeing a radiation oncologist to cyberknife some of the Mets. Not sure if he can treat all of the lesions, so wondering what other therapies (drugs) any of you may have had for brain mets. Most targeted therapies don’t pass into the brain.
My oncologist want to start me on Avastin to help shrink microscopic mets. Has anyone had that treatment?
Also, I read that Xeloda might be able to get through the brain/blood barrier. Has anyone taken Xeloda with brain Mets?
Many thanks.
Helen
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HelenWi
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’Avastin (bevacizumab): What to Expect, Side Effects, and More
Avastin (chemical name: bevacizumab) is a medicine that prevents the growth of blood vessels that feed cancer cells. It was used to treat certain advanced-stage or metastatic breast cancer but is no longer approved for use in the treatment of advanced-stage or metastatic breast cancer.’
If you were diagnosed with metastatic HER2-negative breast cancer and didn't receive chemotherapy, your doctor may have prescribed Avastin (chemical name: bevacizumab) in combination with Taxol (chemical name: paclitaxel).
Avastin is a type of medicine called a blood vessel growth inhibitor, which prevents cancer cells from forming new blood vessels that are needed for their growth. The medicine is delivered directly into the bloodstream via an IV.’
I think this means it is given with one of the taxane IV chemotherapies.
This information is provided by Breastcancer.org.
In the plus side, I’ve heard really good things about the gamma knife. We have one at my hospital clinic and they’re getting really good results from it. I’ve been told I would be a candidate for it but to be honest, I hope never have to use it, or not too soon anyway.
This study below analysed Xeloda and stereotactic treatment together.
In our single institution experience, we demonstrate stereotactic radiation and capecitabine to be a safe treatment for patients with BCBM with adequate LC. Further study is needed to determine the potential synergy between stereotactic radiation and capecitabine in the management of BCBM.
Thanks, Kerry. Yes, since getting this news, I’ve done some fast research and read the same about Avastin. I will ask questions of the radiation onco today and I also set up an appt with Univ of California San Francisco breast oncology — I’ve gotten second opinions from them before. They see only BC patients so should have some reliable info.
I’ve had some mets removed from my spine using cyber knife and it worked great. I also think this radiation oncologist is brilliant. I think radiation is the main tool to treat brain mets.
This is so frustrating because it seems that my targeted therapy Piqray is continuing to keep my bone Mets stable. And it seems that brain meds are better treatable if you are her2+.
I learned to be so positive about MBC and now this challenge. It’s 4am here and I’m I’m awake. Ok, will try to get back to sleep.
Please don’t be hesitant about the gamma knife radiation. I have had 4 liver tumors resolved with gamma over the years. It is an amazing tool in your arsenal!
Find out your radiation oncologist’s and the physicist’s background and experience. Gather your questions and get answers.
My BIL just had brain gamma and did beautifully, he had one tumor, one treatment and back to work in 24 hrs. Mine were liver so more treatments, some “maybe I could take a short nap” fatigue but nothing debilitating at all.
Please keep us posted….but it’s a definite thumbs up from here! 👍
Thank you for your encouragement. I actually had gamma knife with several spine mets and it worked great. After that, my remaining bone mets stayed stable and still are. I have no fear of the procedure but I have quite a number of brain mets. Hopefully he can get rid of all, I’ll find out today. The radiation onco is really brilliant and I have total confidence in him. But I am getting a second opinion from UCSF where the oncos only do breast cancer. In hindsight we should have been more vigilant on the brain because my first met ever was found on the skull, but it disappeared so was out of mind. Anyway, have to look forward!
I had numerous brain mets, lesions on my dura, and brain swelling. I was scheduled to begin Enhertu (it crosses the blood-brain barrier) so the neuro-oncology team wanted to wait until after my third infusion to make a final decision about using the gamma knife. Well, my results were excellent! A couple of my dura lesions disappeared, swelling is gone, and everything else is smaller. They’re going to recheck every two months with a brain MRI. We still have the gamma knife as plan B.
That is great news for you! I’m wondering though, are you her2+? I’m not, I don’t think I’m even her2 low, so not sure if enhertu would work for me. I’ve read that some people change, but not sure how I can get another biopsy. I will ask all those questions. Good to know how well you’re doing. Best to you!
Sorry, I should have added that I’m HER2-low. My understanding is that if there are ANY HER2 receptors (as in HER2-ultra low) it might work because of the bystander effect (kills cancer cells adjacent to the targeted cell).
I just had my consultation at UCSF - second opinion. So, as we know there are better opportunities for brain mets if cancer is her2+ and so far I'm her2 0. However I do have a couple *alterations* in my her2 gene which indicate perhaps a HER2 drug is still a possibility. The breast oncologist I consulted with is suggesting tucatinib which does penetrate the BBB. This is different than what my onco initially suggested, so will need to think and discuss. For now, I'm sticking with. my existing systemic therapy and going forward with the gamma knife.
Thanks! The anticipation of the scans given my tumor markers and then the results, gave me a bit of a stressful time, But now I’m sort of back into the mode of “hey today I feel great and I have tons of time to do all the things I love”.
Have to document/discuss alternative suggestions to my local oncologist. Bothers me that he didn’t even mention those. But he’s a general onco and she’s director of breast oncology at UCSF.
My mom has had the gamma knife to 4 small brain lesions not all at the same times. Three different times . But she did great!!! And no side effects for her at all.
It kept saying that your original post has been deleted and I couldn't see it. It still says that but I can see it.
See if you can get a liquid biopsy. I just had one and discovered that, after 5 years, I am ESR1+. I am not sure about changes in HER status. That must happen, too.
Someone I know professionally was just diagnosed with mbc with brain mets. She had gamma knife and is now on Verzenio. She finds it rough, but her oncologist said it is the only one of the three targeted therapies (Ibrance and Kisqali are the other two) that crosses the blood-brain barrier. -- I know you have been at this for a while, so you may have done Verzenio.
(For some reason they published my post twice and I deleted one so that may have caused the issue)
As others have mentioned, Enhertu also crosses. I’ve only been at this for two years. I had to stop Ibrance because it caused pneumonitis plus it didn’t seem to work in those three months. So I’m not sure if another cdk 4-6 inhibitor would work .. maybe?
On Tuesday I’m going for second opinion at UCSF with a breast onco I’ve gotten second opinion from before. It will be interesting to see what she says. Also starting in on the gamma knife process right away.
Thanks for citing your friend’s treatment. This gamma knife just blows my mind.
Ehertu can cross the blood brain barrier. I've been on it over a year and no further recurrence of brain mets.I've previously had 3 lots of Gamma radiation.
Wow, that’s great .. but I’m not her2 positive. I’d love to get a new biopsy to see if maybe I’m her2 low. But with bone mets, it’s hard to get tissue and I’m not sure they want go into the brain….
Just one more question … is she taking an additional therapy, such as a standard targeted therapy or chemo? Since Piqray is working on my bone Mets, onco wants me to stay on Piqray.and add an Avastin. I’m wondering about the interaction. The combo hasn’t been tested officially.
Thanks for all your answers and suggestions. This is the first time that I needed advice due to progression and I now understand how it is to be grateful for all the support and friendship from this forum.
After seeing the radiation oncologist on Friday, most of my fear is gone because he was very reassuring that gamma knife would remove all of the lesions and now the question is about ongoing therapy. We will start on gamma knife right away. Piqray is still keeping the bone mets stable. My onco wants me to start avastin infusions to manage brain mets and I was able to get in at UCSF on Tuesday for a second opinion so I’m doing some prep work to make sure I come up with good questions. I’m pretty certain that the UCSF oncologist will have a different suggestion because she really wanted to meet with me prior to starting Avastin, so that will be another challenge to figure out what to do. Maybe I’ll want a third opinion🤣🤣
Heartfelt thanks to all of you and I will update you on what ensues.
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because she really wanted to meet with me prior to starting Avastin, so that will be another challenge to figure out what to do. Maybe I’ll want a third opinion🤣🤣
Exelixis Clinical trial XL091 pill and Tecentriq (Atezolizumab)
Enhertu
enhertu
progressed on xeloda to Doxil…some fun things that happened on the way… with pictures… 
