Brain Mets Sisters
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hello everyone, I'm new and scared. Last Nov 2014 scans showed 5 brain mets. I received SRS and things showed shrinkage until yesterday! Onc said that MRI shows increase in size and several other lesions. Upon our initial conversation, I can do WBR or enter a clinical trial with neratnib and xeloda. I'm deathly afraid of WBR. The other twist in my dx is that I do not have systemic disease as far as we know. My BC was treated in 2013 and no other sites with mets except for my brain was found. Have you heard ofthis? Looking for some support and words of wisdom from you.
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Wishing you support and hope you find the right treatment. I have heard of people with just brain mets and I'm sure they will be on here soon to help you.
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thank you, smiley47!!! You can't know how much it means that you responded. I feel like someone is out there. No one understands this unless they've been through it. I feel like I'm in a deep dark depressive hole. I feel like I have no options. I'm 42 and I have a 4 -yr old who needs me for the long haul! Everything I read about brain mets scares me but It doesn't stop me from reading and googling. I'm reading through previous posts here and everyone seems so together. Me? I'm disjointed, lost, and feeling hopeless. This has hit me like a ton of bricks like when I was first dx'd. I hope these dark days pass soon so I can start thinking straight and begin the fight.
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letranger- Hang in there. You are still in the shock period. Its ok to feel like you do. We are here for you. From my knowledge, lots of people get brain mets without having mets anywhere else. You aren't alone. It is my understading that Her2+ patients have a higher incident of brain mets. Are you Her2+? Just curious. If so, you might check out that thread as well for people with the same diagnosis. And it is good news that you have options. Go with what feels right for you. I am also a mom ( have a amost 5 year old, 7 1/2 year old, 10 1/2 year old and almost 13 year old) and apprecaite all the fear that goes along with your diagnosis. I had brain mets but also liver ones. My first reaction is that I would try the clinical trial with meds before going to WBR. That way, you still have WBR as a back up plan if you need it. Xeloda and Tykerb were great at keeping my brain mets at bay once I had used gamma knife on them. So I have pretty good feelings towards Xeloda. Not sure what the other drug is. But like I said, go with what feels best for you.
we are here for you.
Hugs
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dear leftfootforward,
Thank you for those words! Yes, I'm her2 pos.
I just met with radiation doc and he seems to be pushing for WBR. I have 11 lesions all under 15mm. He says I can do the trial and if it goes well, continue. But if it doesn't then do WBR. I don't know if I like the idea of bailing out of a trial. I'm so spacey. And I have not even taken anything. I knew this could happen, but still totally unprepared for it. Just writing here has been therapy as I sort this out!Thank you.
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And he said I would do high dose WB rads for 3 weeks. That seems so long! He wants to treat it aggressively since I don't have systemic disease. I would lose my hair within 2 weeks, most likely permanently. But he says since I'm young, so it might grow back. Also said, short term memory loss is side effect but can be regained after 6 months to a year. He could not explain why most people experience heavy fatigue after 3 months of WBR. Is this info pretty close to what you ladies have experienced? Thank you again
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Just came out from craniotomy and got my one brain met out... So good that I can still exercise, eat.... Have to cherish life every moment
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good news Hahaha. Take it easy. I found the meds they put me on after surgery to be harder than the actual surgery. don't overdo it too fast. But very happy you had good results
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wow. Congrats on a successful surgery!
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letranger - my Onc went for aggressive treatment when I was diagnosed w brain mets a year ago - craniotomy and WBR and it seems to have worked. I described my Side effects above.but my hair has come back ( and I'm in late 50's), I don't think I've suffered from memory loss and my radio onc was adamant I wouldnt. Worst bit was fatigue.
Hahaha - so pleased for your good news
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I learned on Monday that in spite of my PCR to neoadjuvant treatment of my breast cancer, that I had a hidden tumor growing this long while in my brain causing neck and headache pain, dizziness, awkward gait and uncontrolled vomiting.
I had my brain tumor removed from my cerebellum this Thursday and I should go home tomorrow. In a few weeks they want to do targeted rads to the tumor bed.
The tumor wasn't well vascularized and it was well encapsulated so it doesn't look so bad yet. I'm really interested in targeted therapies through the blood-brain barrier as it worked so well elsewhere in my body.
I too have young boys (5 & 8) and this is taking up so much of their little lives. I can't even drive for a while and our school drop-off is going to be rough. I think we need toget some home help possibly.
Very frustrating that HER2 can hide out in the CNS.
Ann
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Hi, Fujiyama and all, I was wondering about your being grounded from driving. No one's told me that, although when I told the RO nurse that I was going to Yosemite with a friend, she asked who was driving. I said, "Not me", which was true, and nothing more was said about it. I know I'm not 100%, and so am being very cautious when I drive, but wonder if that's not medically advisable.
I called the RO nurse about my profound fatigue and if she had any suggestions. She said at 2 weeks post-treatment, they would expect my fatigue to be getting better. No ideas and not very encouraging.
xoxooxoxoo
Calico
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The driving thing was an order from my mother. She wasn't going to let up, so I had to ask my MO. It's because of the seizure. So we'll make it work. I am sure as time progresses she'll get a little better. I'm lucky thAt my kids walk to school in little packs of friends and other people are here. The WBR hasn´t been too hard. I only have to do five more. I know that they are keeping a few doses in the back pocket. We also have gamma and cyber knife in town. I just had too many itty-bitties. Bald I can handle. Don't care if it comes back. It's just another part of the story.
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I'm curious about the driving too. i was told i couldnt drive during the the WBR treatments, but then when i saw onc a cople of weeks later, he said that since i had never had seizures i could drive. i go for gamma knife in about ten days and he said i can't drive for a couple of weeks after tha. I'm curious what others have been told about driving?
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hi fujimama and others with WBR, I have a question: how many WBR sessions did you get?
Do you know the difference between 2 weeks and 3 weeks?
@surfdreams: I asked my RO about driving when I had SRS, and he had no restrictions. He also said I would have no restrictions during and after WBR. I think he mentioned something about seizures and I have not had any so driving is ok. Perhaps it's an RO preference as well?
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@agness: you asked about targeted therapies. Im her2pos, and I will meet with an onc next week to talk about a clinical trial with neratnib and xeloda. I don't know the details, but my onc said I could not have had WBR in order to participate in the trial.
I believe there is also Tykerb. Neratnib and Tykerb are believed to cross the BBB. I'll post more info once I meet with onc.
I'm trying to avoid WBR. But reading posts from the ladies here does not make it seem so bad. I hate to lose my hair again. But I'm trying to look past that. I never wore a wig during chemo when I lost my hair, so it's new territory for me.
Also, my initial MRI showed no brain mets. Then suddenly 15 months later, scans showed 5. I has SRS and they shrank for 5-6 months, only to show growth and progression on my lastest scan. My onc believes they were there from the beginning but too small to detect. Scans show no mets anywhere else. My theory is that it is localized only in my brain and if I treat it aggressively there, then hopefully we can get rid of the buggers and I can move on with my lifewith just the permanent scars from cancer. I go back and forth being hopeful and hopeless!
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Hi, letranger, I seemed fine after 7 sessions, talked to my RO after session 8 and told him all was well, and then was flattened with fatigue after session 10. It was never suggested to me that I have any more than 10 sessions.
xoxoxoxoxxox
Calico
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in the UK you have to report brain tumours to the drivingauthorities and your licene is then suspended for 2 years. Doesn't seem to matter whether you've had seizures or not.
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Hi CalicoCat! Boy, I'm so happy for you that WBR is over for you! Now you are on the road to recovery! I hope you gets lots of rest and the SE's are manageable. I don't understand the difference beween 2 weeks or 3 weeks of WBR. I wonder if it is just spread out. I need to ask my RO, but was hoping someone here had an answer, too.I hope everyone is enjoying a nice weekend.
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I was given a choice of two weeks or stretching it out. RO said it might help with memory issues especially short term. However, I was born without much of a short term memory to being with. Can't miss something you never had.
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Ok, I'm back again...Thanks fujimama for the reply. I was hoping it was the same dose just stretched out.
I also found this trial: https://clinicaltrials.gov/show/NCT01494662
I think it is the one my MO was talking about. I would have to see another onc conducting the trial. I am seriously contemplating doing this before WBRT. I hope I qualify. I'll find out next week. I've never been in a trial and looking forward to be helpful to others, too.
Hope the ladies with craniotomies this past week are doing well.
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letranger - you are too sweet. Yeah, how awful we had to have brain surgery. What an ordeal.
The drugs that I have been reading about are:
Tykerb/xeloda
IT targeted therapies
I had a pathologically complete response to neoadjuvant treatment (hoping it held true) so herceptin and Perjeta seemed really well targeted to my malignancy. The studies into trying to get through the BBB into the CNS are sll pretty experimental still.
My neurosurgeon said that surgery plus targeted radiation in my case has had a high success rate of getting rid of the tumor. I know they want to monitor going forward though which makes me think that they think it's coming back.
Who knows what the God-awful truth will be but I've got two young boys who need their mom. I'm gonna fight for my health every step of the way
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Hi agness, I feel your fight! And based on what I read, you have a great chance that this is it for you in terms of brain mets! Surgery + rads has a great outcomes. Warmest regards and hoping the hugs and kisses from your two boys is making the healing process more bearable!
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Agnes- and i will add that Tykerb and Xeloda worked wonders for me for over 2 years. My head is still clear, its my darn liver. So I am very happy with the Tykerb/Xeloda combination. Xeloda is a small molecule that they think also crosses the bb barrier.
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leftfoot- thanks. I'm about to start that combo this week. As soon
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Hahaha - great news about your surgery!!
About the driving - My doc originally said no driving for 6 months due to the seizure I had before surgery. When I saw him at 4 months post-op, he and my neurologist agreed that the seizure was caused by the met and since it was gone, I was allowed to drive. I started out slow and just going around town, but I've progressed to farther trips now. I'm a little over 6 months post-op. I'm still taking a low dose of Keppra, but the neurologist is talking about possibly weaning me off of it when I see him in the Fall. We'll see. I don't have any SE from it and I'm anxious about another seizure, so I feel like I should just stay on it for a little while longer.
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thank you ladies for your support and I love all my doctors!!
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regarding memory loss, my WBR radiologist put me on Namenda fpr the nect 6 months to tty to prevent it. It's an Alzheimer's medicstion thst apparently has proven beneficisl in preventing memory loss with WBR
I'll let u know how it goes down the road if i remember.
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sorry gor my horrible spelling. not nearly as accurate on my kindle as i am on my computer
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OK. I'm back on my computer, so hopefully my spelling will be better. So I have a question for those who have had Whole Brain Radiation. I had 10 rounds in June and will have Gamma Knife next week. My question is.... have you had hearing loss following your WBR? I sure have. Does your hearing return to normal at some point, or is this permanent?
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