Brain Mets Sisters
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Lori,
I'm sorry to hear of your progression. I had a craniotomy to remove a single met in my temporal lobe last February. It was a relatively easy surgery and I found the recovery from it to actually be easier than from my mastectomy. My neurosurgeon and onc recommended I follow up the surgery with GammaKnife radiation to the tumor bed and I had that done 6 weeks post-op. Brain MRIs have been clear since. You'll be in my thoughts as you navigate your treatment path.Carrie
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Arg- don't let me keep you from asking. It might be worth trying for you. it never hurts to ask. I know I did. Just didn't make sense in my case.
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Lori-
I had a craniotomy in February. I found the recovery from the surgery pretty easy. The drugs I had to be on after we're not my favorite. I was very happy to get off those meds. they were the worst part for me.
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lol...leftfoot...I meant Arrrrrrrrgh!!!!! But you can call me Arg. I feel like Arg! Love ya!
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LOL. I am blaming it on my Herceptin infusion today. But that is funny. Glad you thought so too.
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update on WBR. taste changes. I can taste spicy and sweet. Hair gone 4th time decreased steroids and had headache today. Could've been weather related because it seemed like a sinus headache. Legs ok but I don't Rush up or down stairs. I had run errands today and was really tired. 20 minute nap helped a lot. See Onc tomorrow and I don't know the plan if any. I'm holding my own so far. Good luck ladies and thanks for listening
Maureen
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Here is the MD Anderson article.
http://www.mdanderson.org/newsroom/news-releases/2015/risks-whole-brain-radiation-therapy.html
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My sister has WBR (at 35 years old) for aml leukemia and is ok, though one could argue she has some cognitive issues and her hair never came back. She wasn't supposed to survive. That was a stem cell transplant and 7 years ago.
I posted a MD Anderson article above on WBR. I am on the fence about WBR. I think my personal objective is not to undertreat the multiple mets but to try to hold off on WBR all long as it is feasible. Currently, I am on Xeloda/Gemzar and the Xeloda seems to be working at keeping things stable - and one of my mets in the frontal lobe shrunk 6 mm to 4 mm.
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great news. I had gamma knife 3x before agreed to WBR and did so after careful benefit to QOL. my driving goal is fight as long as possible until QOL suffers. So far so good. The only thing I miss is the driving part. So I need to see if I can drive again.
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Hi Everyone,
My brain mets have multiplied from 3 to 6 after I failed multiple cycle of chemo drugs. My radiation onco advised that she cant do Cyber Knife since there is some swelling due to the previous WBRT ? Has anyone faced something similar. Let me know how it was managed. Would really appreciate the advise
Cheers and good luck to us,
Usha
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Update on me: New PET scan result is unable to confirm any recurrence disease (not even the concerning ones shown on MRI) YET... Well, I guess at least this is better then somthing lights up too brightly on PET. But will be doing the SRS anyway.
Agness- I really admire your courage of fighting back! I also feel sad dealing with this and ending up in this situation at a young age. Thanks always for your encouragement and newest information. You are my new hero!
Freakzilla & Sue2009 - thx for your concern! It was picked up in a post op routine scan, there were no significance symptoms that made me feel alerted.
Leftfootforward - thx for thinking about me.
Maureen813 - congrats on finishing WBRT, and thx for sharing your story.
To everyone else- good luck! Thinking about all of you and sending hugs....
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Well, I will not be having surgery. That's the good news. Unfortunately the MRI showed the one tumor on the frontal lobe, but there are also 4 other small lesions in the cerebellum. That is too many to do surgery or targeted cyber knife treatments. The next step is whole brain radiation. That would target the whole brain to kill the current lesions and anything else that might be forming. It's a tough regimen with lots of possible side effecte but I would most likely be able to have it at my oncology practice in Blairsville which would be much easier on us since it is closer than Asheville. We are absorbing the news and will contact the local radiation oncologist to set up the treatment.
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Bourscheid - I would push back on WBR, sometimes if you push they present you with other options like "well I guess we could do SRS..." They are technicians and tend to rely on past experience even if we know it doesn't improve anything really.
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I posted this elsewhere but I thought it might be helpful. This is kind of a summation of what I have learned at this point in relation to HER2 brain mets but some of it might hold true for other types of BC malignancies.
With CNS/brain mets there are a few options to consider:
Was there progression to the brain at time of diagnosis or progression during treatment?
Was there progression within the brain -- more mets developed?
Are you stable of disease elsewhere in the body?
How many lesions are there?
Do lumber punctures (3 draws are 90% accurate) show any indicators of leptomeningeal spread? (Not just CTCs)
Standard treatments are rads (WBR or SRS) and craniotomy if appropriate. Multiple rounds of SRS to treat spots preserves cognitive function and appears to be effective based on recent published studies.
Having rads before craniotomy may reduce risk of spread from cutting into an active tumor.
Systemic treatment options depends on disease elsewhere in the body but can include: biologics or chemo drugs depending on the type of cancer and type of progression.
Here are some of the drug protocols that I've come across:
Tykerb/IV Herceptin
Taxol/Herceptin/Perjeta
Tykerb/Xeloda
Tykerb/Xeloda plus IV Herceptin
Kadcyla
Some of the drug trials I have identified include:
ONT-380 plus Xeloda and IV Herceptin (I think I got that right)
IT Herceptin -- developing protocol includes IV Herceptin/Perjeta plus Topetecan in the IT dosing
Neratinib
There are also trials going on with Herceptin antigens but I'm unaware of any trials targeting brain mets patients at this time. Access would require petitioning to the FDA Investigational New Drug program to get approval for pre-approval use.
https://en.m.wikipedia.org/wiki/Investigational_New_Drug0 -
Thanks for the info! I will do my research before I meet with rad onc.
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Lori I had 12 mets they treated with gamma knife before WBR. it was performed at Roswell park cancer institute by a dr prasad if you'd like to tell your onc
Urs. I was put on low dose steroid to cut swelling from WBR can they put you on steroids then do surgery?
Agness I'm her2 negative so options shrink. I'm having success with halaven for systemic contol for bone and liver. The brain? Time will tell when they do MRI in a month or so. They tell me that is how long it takes to work? I guess the radiation initially keeps them from multiplying and start to die off in 4-6 weeks later.
I will keep you posted
Love
Maureen
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Hello everyone. Warms regards to you all. I know there are a bunch of us going through some "stuff". The support here is awesome.
Was wondering if anyone is on the ont-380 clinical trial or considering being on it.
I am not entirely sure I undrstand how the drug works in comparison to lapatinib or neratinib. Anyone want to try to explain?
Thanksin advance.
Edited to add link: http://www.oncothyreon.com/product_pipeline/ont-38...
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Sorry I don't know that trial. Hopefully someone along soon to offer information
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Bourscheid
Having WBRT is not so bad, although I know there are some on this thread who are opposed, there are also a number who have had it. I am one of them. I had a craniotomy and then WBRT in July 14. I do not believe my cognitive faculties have declined. I returned to my job in October 14 full time (I am a senior partner in a large professional services firm) and none of my clients or partners have noticed any difference. My husband says the same as every time I read a post on here about avoiding WBRT I worry about it and ask him.
I am sure if you can be treated less intrusively it's a good thing but if WBRT is the only option, it's not necessarily going to damage QOL.
Good luck to you and everyone else on the thread undergoing trea
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I've heard with brain cells and rads it goes both ways. While the tissue is highly resistant to oxidative stress from rads, it also is very slow to turnover so damage lingers longer.
I think all of us understand that WBR might be called for in our futures but current thinking is that treating the lesions as they crop up is the least toxic and can be repeated successfully resulting in less damage.
With the sophisticated computer-based rads systems push back might just be that they don't want to spend the extra planning time. Or maybe they worry about insurance pushback (something others aren't seeing and could be easily contested I think), and some might be relying on their training. I like my RO who treated my cerebellum but she did throw out to me when we met that WBR was the current standard. Having spent time with brain cancer patients when I was having proton therapy last year I had coincidentallyresearched the topic a bunch so I already knew that WBR wasn't the best (most of the time).
When unavoidable WBR might still be best given in combination with SRS to soecific lesions. There are also methods to "shield" the hippocampus that are supposed to help preserve cognitive function.
Even with WBR some of us might not ever notice much of a cognitive difference as it might take years to emerge, years that we might not live to see. That said, I believe we should always treat our bodies with the least toxic options possible.
HTH
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Anti Epileptic Drug Use Improves Overall Survival in Breast Cancer Patients With Brain Metastases in the Setting of Whole Brain Radiotherapy
Just read this title this morning and thought you'd all find it useful. Continued prayers for you all.
Littleflower.
Sorry I don't know how to copy the link to the article, I'm sure a Google search of the above article' s title should get you to it. Please post if you have trouble, I'll work on getting it to you
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I am one of those who is avoiding WBRT, but I know that it is an option for me if I choose to do it later. I have multiple brain mets and chose to go on a clinical trial so I could feel "normal' and not lose my hair at this time. I'm already so self-conscious about myself with my implant surgery failing on my breast cancer side. I am also lopsided with only one implant. So losing my hair, possibly permanently, will most likely add to my depression and make me a hermit. I also feel the effects of "chemo brain" and I can no longer multi-task. It frustrates me. I have significantly reduced the hours in my job that I love. Although not everyone gets the cognitive effects of WBR, I feel like I will be in that unlucky bunch. I have heard success stories with WBRT and I love to hear them. I had SRS in Dec 2014 and it shrank my 4 tumors for about 6-7 months. Then they started growing. So my theory is WBRT might not work on me. But who knows.
For now, I wait on my scan results and hope that everything is at least stable so I can stay on the clinical trial and continue to pop the chemo pills in the comfort of my own home. That's not to say that I do not feel any side effects from it. I do. But I'm willing to put up with it.
I also appreciate reading about everyone's treatment plan and how it working for them. The info is invaluable as we choose different treatment options. I just hope any treatment plan we choose brings us closer to NED or at least stable and a good QOL. Love to you all. letranger
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Usha14 - There's not much info here to go on. Are you taking steroids to reduce the edema? Maybe after you do that, you can get SRS? Which chemo drugs did you "fail on"? Sorry not to be much help here but maybe if you post more info someone can offer some advice.
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I'm on tyberk (sp) starting Monday night. I am not taking it with its component chemo drug. Even my oncologist said that with my history it shows I most likey can't handle chemo. I am also working on a second opinion to zap brain mets with Gamma Knife. I have a few brain skull mets that I would like zapped as well. I do know of a neuro surgeon who will do gamma knife on multiple brain mets, but I wouldn't do more 4 at a time. I'll just keep zapping them until the little demons are all gone.
I'm working on building my immune system so I can handle the tyberk without side effects. The side effects are scary. In that I just gotten over c-diff/radiation that killed my flora, I am at high risk for the bacteria infection c-diff. My naturopath oncologist said I need to add whey to my smoothies as protein will build up my immunity, which hopefully will eliminate possible side effects. He also suggested a special type of probiotic that will crowd out any remaining c-diff bacteria. He gave me a few more suggestions to eliminate possible hand/foot/mouth disease, and oral mouth sores.
I won't do wbr as from what I read It doesn't increase life span that much and risk of the side effects can be devastating especially to those already weaken with a weak immune system. I see that there are those here who faired well with wbr. I also read forums where it didn't go so well. It seems to me the wbr is the last resolve in brain mets treatment.
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I am meeting with the rad onc on Monday at 9. The neurosurgeon I saw felt that 4 or 5 of the mets were deep into the cerebellum so cyber/gamma knife may cause too much damage. The one on my frontal lobe could have been removed surgically if the others weren't there. I am interested in hearing the opinion of the rad onc.
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Sounds like a plan, Lori. Best of luck with your Rad Onc appointment on Mon and let us know.
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praying for a good outcome Lor
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Please accept my apologies for posting on this thread. The reason for this post is to mention that I recently listened to a webinar delivered by Dr. Patricia Steeg. a prestigious molecular biologist with a keen interest in CNS metastasis. Dr. Steeg mentioned a clinical trial, NCT01924351, for HER2+ patients with 1-10 brain mets. The purpose of this trial is to determine if treatment with SRS followed by a HER-2 directed therapy regimen may result in a 6-month distant brain relapse rate of less than 30%. (Possible anti-HER2 agents include trastuzumab, pertuzumab, trastuzumab-emtansine, or lapatinib. Anti-HER2 therapy will be delivered in combination with appropriate cytotoxic therapy as per FDA indications).
Under normal circumstances, the number of brain metastasis that radiologists are willing to treat with SRS (such as Gamma Knife or Cyberknife) is fairly limited, so the fact that up to 10 brain mets can potentially be treated with SRS in this study renders it fairly unusual.
Those who might be interested in other brain met trials may call 1.800.4.CANCER and ask a skilled representative to run a complimentary customized clinical trial search.Sending each of you my best wishes, and again, please excuse the intrusion.
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Thinking of you, Lori. I hope you can get some good answers!!
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Had a good appointment with the radiation oncologist. Really felt comfortable with the decision. He took the time to answer all of my questions and addressed our concerns. We are going with 15 treatments over 3 weeks of whole brain radiation and begin on Monday. Get to to have the lovely mask made tomorrow. Also have an appt with my medical oncologist to plan what to do about chemo. Although I hate to do it, I am going to probably request holding chemo for the duration of the radiation to allow for maximum effectiveness. I am on Ixempra and it really,really does a number on my white blood counts and energy level all by itself. But it is also working. I do hope to be able to continue my Faslodex injections so I am not left totally unprotected from treatment (just had one last week so won't be due until rads are ending). Hope you all are doing well!
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