Brain Mets Sisters
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Erkipper......I would fight like hell for targeted rads. They told me Whole brain was my only option. It didn't work. All of the original tumors came back within a year. I got a different rad oncologist, who just zapped 14 of them. He said that WBR was the standard of care, but he would have done targeted rads to start with. You need to stay strong.
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Sorry for yapping so much on this site but, well, I'm scared.
My wife and I are to meet with her oncologists representative next week to discuss the next plan of action. So far my wife's options seem very few. She's not BRACA 1 or 2. Also, many chemo's can't cross the Blood Brain Barrier. Currently she's on eribulin and it works but can't cross the BBB. She'd been on Xeloda for a year before it stopped working. My wife's TNBC and has been tested twice for actionable mutations for a trial but none are available. Carboplatin is good against TNBC and crosses the BBB but it's for BRACA + people. Her oncologist is against an Ommaya and methotrexate (I don't know why).
I need some help here. Any ideas? I'd like to have a few to mention at the meeting.
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mine- I am in a similar position. I am not triple negative as I am her2+. I am stable from my neck down but not in my brain. Even though I am Her2+, most of the drugs used to treat it are cardiotixic and have hurt my heart. I therefore have very limited options. Also, what has worked for my liver Mets doesn’t cross bbb and has led to numerous brain tumors. What has previously worked on my brain Mets has failed in my liver and has hurt my heart. I have been battling the last 1.5 years balancing the two. So I understand the frustration, fear, and concerns.
Currently I am in on weekly taxol and get herceotin and perjeta every 3 weeks. I have a brain mri on June 17th to see how the last gamma knife treatment I had in February worked. I am hoping for ( or less new Mets in my brain on This scan. Then I’d feel like the rate of Mets to my head will have slowed down.
I am very scared. Nothing in the last year has slowed or prevented my brain Mets and I have so much to love for.
Anyway, all this is to say I understand some of how you are feeling. I hope they find something for your wife that will help you turn the corner and help her start to feel better.
You are in my thoughts.
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Oh Left foot, I really understand; that horrible feeling nothing is working. My wife has cancer to the brain lining dura so gamma knife won't work for her, just WBR and hope for the best. Meeting Wed to go over her treatment plan. I hope Kaiser can pull of some sort of miracle, and I wish the same with you.
I notice DX stage 4, 2012. Wow, you've been wrestling with this beast a long time.
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mike- I have Kaiser too. We live in seattle but I grew up in portland.
Yep, I’ve been battling Mets for 8 almost 8 years and this disease for flimsy 10.
I’m tired of the fatigue and SEcand not feeling well. I wouldn’t trade the battle however as I have seen my kids get older. I hope to be battling gut many more years. But I’m very tired. It’s been a long 8 years. Totally with it.
Best wishes to yo
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Yep, the longer you're in Tx, the harder it gets in terms of se's and fatigue.
I'm so tired and weak now compared to where i was a year ago.
We drove to Palm Springs last year...very long drive from the Bay Area. Don't think i could do that this year. I can barely stand up and walk. Eyes still really messed up from brain mets, short term memory gone, back is killing me, and now lymphedema all over. No fun
L
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Thanks for the info. I meet with radiology tomorrow to discuss options . I would also like to know more about the side effects for the whole brain radiation. How long have you been to tumor free since your last gamma knife procedure?
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Kktenz. How many times did you have the gamma knife procedure?
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Erkipper....two times with gamma. WBR kicked my ass. I was useless for 6 months.....had to go on disability. I tell everyone it broke me.....but keep in mind that everyone reacts differently. You could sail right through it. Keep me posted.
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I sailed thru WBR...Just lost all my hair and taste buds, that's all.
L
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Hello,
I had stereotactic radiation to six small brain mets at the end of January. My MRI today showed that one is still growing. My RO is out of the office until June 17th. I'm devastated. I wanted to know if anyone had that situation and if so what did they do. It was my MO who called and'ts not her expertise and I think she told me other mets were stable but I had hoped to hear they had reduced. Pretty sure my RO had sad the SRS was highly effective so was not expecting this news
I was worried about maybe potential new lesions. I have been on Xeloda which apparently crosses the BBB and at my follow up last week for the first time in my 3.5 year journey the areas in my body ( a couple of lymph nodes under sternum and two in my lung had all responded to the Xeloda and showed regression which was the first time I'd had that with all my treatments. Feeling devastated. Blessings to you all.illimae my inspirationI made a decision a while back to not spend too much time on these boards and try and live i n the moment. I was upset to see you had a setback but looks like you're getting it taken care of. Wishing you continued wellness. I don't understand the difference in the treatment you had versus mine. I had a mask and you have that metal thing. Is that also stereotactic radiation?
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Hi dorimak, I’m sorry you have a stubborn met, I haven’t dealt with one that didn’t respond yet but I’m sure your RO has and will know how to proceed. Is it possible the increase could be tumor flare or radiation effect?
Also, yes I had gamma knife SRS again. I’ve accepted that there will always be setbacks at one point or another, it’s the nature of the beast. The mask vs frame varies by hospital and while it looks terrible, the worst is over in a matter of minutes.
Please share what your RO’s plans are, if you don’t mind, until then I hope you’re able to focus on more pleasant things while you wait.
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Erkipper, as someone who has had WBR and radiation to one area, I am still going strong. I took a LONG time to get past the WBR fatigue, in my case depression was the most debilitating side effect. I got over that and recovery was quick once it started. This was probably over 3 months. The spot treatment did not cause me ANY side effects. I do not perceive any major deficits in my memory over the last 3 years. I paid the bills for two households until my condo sold this past may after my mother's death in January. I took care of her as with much help from family til she passed. All of this AFTER my treatment.
As someone said above, everyone is different. Lita did well after WBR, some of us deal with fatigue etc. Not everyone develops depression like mine but starting to walk again spurred me out of the depression and fatigue. Good luck.
FYI, last MRI showed spots still shrinking that were treated last year.
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Re my freak out above on one of the brain mets treated in January by SRS had grown, I came across this on a site on the WBR vs SRS topic. Most of the articles on brain mets are often for lung cancer and I tend to bypass but this was helpful. " "In our experience, spots on magnetic resonance imaging that appear to have grown after stereotactic radiosurgery are often radiation-base necrosis or hypertrophy of the brain. This is well known in the radiation literature, but many surgical and medical oncologists may not be aware of this.".
It was my MO who called me as my RO was out. Hopefully it's not what I feared. Also learned that it can take up to 12 months for tumors to regress. I was upset the others were stable but they're so small it's probably too soon to see any visible regression. Prayers gdood energyappreciated.
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Dorimak, thank you for adding that info, I hope it gives you some peace until you’re RO can clarify. In my own case, I was disappointed with the initial results of my first gamma knife as I expected (incorrectly) quick shrinkage but it does take time and they did eventually disappear.
Sending you good vibes 😀
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My mets that came back are still shrinking and they were done Easter of 2018.
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Well not the news that I was hoping but not hopeless. RO said that they're assuming the growth in that lesion is cancer. He explained that the main part of the lesion was showing cell death but there were likely there some smaller edges or like little tentacles that would be too small to be visible on the MRI. He said there's inflammation and fluid around it that indicates that my immune system is trying to kick in. I've had no symptoms but am on steroids.
When they treat a lesion they do treat beyond with a margin but because the radiation does damage the brain they don't go too far out. The plan is to go in and do another treatment. I asked him about the probability of success on a second around. He said that they have success.. He explained that a lot can depend on your overall performance status. He said that patients that have more extensive disease in their bodies, especially multiple organs, might have less success. My disease is limited to lymph nodes around my sternum and a couple on one of my lungs.
I just have to accept like all of us that I need to lead my life in 2-3 month increments and move on. I am desperately unhappy living in this current old house that I moved to after divorce so still plan to put it on the market and move on. When I got brain metx dx in January, I became resigned to the fact that I couldn't think about selling and moving while dealing with this disease. I found a lovely new counselor who was a former nurse and she asked me "Let's pretend you only had a year to live, where do you want to spend it?". As homework she told me to go out and look for places I might like to live. I did and it gave me such a lift. She did it to give me hope because I was feeling so hopelessly stuck for many reasons in my current environment. I have found a newer apartment complex back in my old neighborhood where I loved and I'm going to simplify my life.I firmly believe that hope and a desire to live has a huge impact on us, and I was losing my will this winter in this environment. I feel cautiously optimistic right now.
Mara51506 so do I understand that you had mets initially treated by SRS that grew, and were retreated?
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Dorimak, sounds like a decent plan moving forward with the brain mets and big yay! for the optimism, determination and acceptance of the incremental living between scans. There are moments when all the “what if’s” drag you down, sometimes you just gotta say screw that and move on 🙂
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Thanks illimae
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Dorimak, I had a craniotomy and had whole brain radiation first in 2016 for a solitary 10 cm met. All was quiet for a long time and then in 2018 around Easter, we had to treat some local recurrence to the same area. I had two tiny areas in the original surgical area so the surgical bed was treated then. So far, my brain has held stable and shrinking. No swelling which is good. If I recur again in the same area, surgery would be my only options.
I was only offered whole brain radiation since I have the most aggressive and fastest growing breast cancer, RO wanted to make sure the whole brain was treated before it grew like crazy. As of today, I don't notice any residual problems from it so if your doctor mentions WBR, don't assume your doom. Local spot treatment would have been nice but sometimes there is no other option. This goes out to anybody new coming on to read about brain mets.
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going in to get results of my brain mri. Hoping that gamma took care of what was treated in feb and that I don’t have too many or any new spots.
Trying to remember to breath.
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Lots of prayers and positive thoughts being sent your way, leftfoot!
Hang in there!!!
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Sending good vibes leftfoot 😀
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verdict/- 3 new spots, other 14 noted are stable. The RO reminded me that he has treated well over 50 spots for me so to only have 14 left on scan is good. And 3 is the least I’ve had appear in recent history.
I guess I’ll tske what I can. We will watch these 3 spots and scan again in 3 months.
I am unhspoy that cancer continues to grow but I hopeful it might be slowing down.
Thanks everyone.
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I'm sorry the report wasn't an all clear, but as you said, at least it is slowing down. Your RO seems optimistic that treatment is working. Hopefully in 3 months those newbies will be gone or stable. Much love to you.
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ok. I am collecting names. Anyone have a great brain met specialist? It can be anywhere in the country. I am researching fir the future as it appears my brain Mets aren’t controlled yet. So I am searching for someone who might have more specific knowledge than my MO and RO.
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https://faculty.mdanderson.org/profiles/debra_yeboa.html
Leftfoot, I think my neuro rads onc at MD Anderson is wonderful. She’s smart, experienced and keeps a calm head. Her name is Dr. Debra Yeboa, she is Yale trained, politely answers questions and has been a wealth of knowledge for me. I tend to ask lots of questions for current and hypothetical situations.
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I see Dr. Dale Lunsford at University of Pittsburgh Medical Center-Presbyterian. He pioneered Gammaknife in the US in the late 80s/early 90s. https://www.upmc.com/services/neurosurgery/experts...
He has been unbelievably great throughout my treatment and does a fantastic job communicating with my MO at my home cancer center. Best of luck to you.
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Leftfoot,
Penny Sneed at UCSF did my WBR as well as gamma knife to two tiny spots a few years later. She specializes in BC brain mets. She is incredible and was able to do my eye tumor at the same time as my brain as well as avoiding my cerebellum and the top of my head (for hair regrowth). High precision WBR. I have heard rumors she is retiring soon. Hope not.
https://radonc.ucsf.edu/penny-sneed
Hope you are able to find answers in your search.
Hugs, Susan
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Hi, everyone,
Hope everyone is doing well.
I am looking for some advice, if anyone can help me I will appreciate very much.
In May I enter a clinical trial her2climb ,
And just by luck they found in my right lobe in my brain a 1.5 cm Tumor, so we have been monitoring since then , until just recently have grown about 1.9 cm this past June 20, the rest of my body is stable.
So I will have a apoinment with the brain radiologis soon, and I want some advice in some of the questions I should ask him, I want to prepare for the appointment and if anyone have any very important question to ask, I will appreciate the input.
Thanks in advance.
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