Brain Mets Sisters
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December 23rd, I had 19 brain mets zapped by the Gamma Knife, and one skull mets located at temple of my head just right over my right eye. The radiation oncologist who did the Gamma Knife along with a neuro-surgeon said he rather take out a lot of tiny brain mets then a few big ones. I talked to a few doctors who would not consider doing Gamma Knife on that many brain tumors. I did a little research and challenged the last radiation oncologist I saw to reconsider. He did more research on his own and saw with new research that you can Gamma Knife a lot of small brain tumors.
I am recovering with little to no side effects. In fact when I had 4 brain mets zapped by Gamma Knife 9/11/14 I had more problems and side effects than I did with getting rid of 19 brain mets. I'm very happy about the recent Gamma Knife surgery. I can't believe how normal I feel without fear of dementia and etc (or loss of hair).
Someone here mentioned earlier that they weren't for sure my cancer was her2+. After dx with metastases breast cancer, my oncologist ordered a lung biopsy and sure enough it was HER2+ and estrogen + which is characteristics the chemistry of my breast cancer (triple +). My oncologist said all my scans including brain are characteristic to HER2+ METS.
. I was on Xgeva and will go back on it at leas for a while due to bone progression of disease. I hate it. I am on low dose of Herceptin every week as it almost caused heart failure when I took it when first dx with stage 1a breast cancer. I am on a low dose of tykerb due to horrible side effects.
I'm also doing alternative, which is helping...about half and half. Half alternative and half conventional. It's been a crazy dance! All and all I am doing well. My liver mets disappeared almost a year ago, and now my lung mets is starting to retreat. The nodes too are shrinking. I've a lot to be grateful for so with the brain mets zapped I'm ready for the new year with lots of hope and still life to live.
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Anastrozol is a part of treatment, also in brain mets.
Hormonal therapies such as tamoxifen, the aromatase inhibitors Femara (letrozole), Arimidex (anastrazole) and Aromasin (exemestane), and Megace (megestrol acetate) have been shown to be effective in treating breast cancer brain metastases in some women with ER-positive tumors.
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Hindsfeet - good for you in pushing back on rads to get gamma knife for multiple lesions. I think docs are not up on the latest treatment options or advances and so we get offered practices and treatments that are decades old a lot of the time. It sure is frustrating as the patient but we often know more about treatment options than they do.
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So, more about me. I've been thinking and in the absence of more testing, which I requested and is somehow being withheld due to cost considerations, I don't see how we can determine anything from one scan.
I asked and expected a CSF assessment now, in conjunction with my brsin MRI and was told that it is always negative and it's expensive do we shouldn't do it. I honestly don't care about the CTCs part, I just want to see if the CSF glucose and protein levels indicate any changes. If they are normal then something is working most likely. Only ~5% of the time will they not show anything.
I also asked several times for s metabolic scan. I had one done a month ago and had I known they could do that we wouldn't have waited a month to start treatment. The PET-MRI scan has been in use since about 2012 and it is fairly new. It lets them compare an area of interest to one that is believed to be in good health and they can see metabolic activity at the surface level to compare. This can help differentiate between scar tissue and active tumor, as well as tumor and healthy tissue. I know some brain mets gals have had craniottomies only to learn that there is just scar tissue. Push to get this PET-MRI done first.
My neuro-onc said it a) wouldn't show anything new or different, b) would be inaccurate, c) required the head of radiology there to do the test properly. From what I have read the first two are untrue and the third isn't my problem. Really? Like dying or irradiating my brain doesn't have costs associated with them? Please.
My friend said it is time to do a higher dose of IT Herceptin to penetrate deeper lesions. There is another cost factor here. It costs about $5k per dose of Herceptin and it is packed for systemic use not the smaller quantities used for IT Herceptin (Genentech can't you get your shit together and pack smaller quantities?) they are trying to time my dosages so that they can use the rest for IV Herceptin of a HER2 patient. I don't know how that works, does the patient get the same amount? I have been getting 30 mg twice a week but my friend said I should bump it to about 100 mg a week. My guess is that 100 mg once a week would be most cost efficient than 30 or 50 mg twice a week. I just don't know what is driving their decision-making and in spite of them wanting to be in control I need to know these things.
I get a headache after getting treatment. My neuro-onc wanted to say that my resolution in symptoms was because I was taking Dexamethasone enough to have that help. I really think it is from the IT Herceptin. I have to drink another liter or two of water and then I take 4 mg Dexa, 500 mg Tylenol, and 600 mg of Boswelya Plus and my headache goes away. Like any bad headache from dehydration, if you wait to treat it medically it gets worse.
The really puzzling part is that there is no accounting for my resolution of symptoms. The facial nerve pains, numbness, escalating chiropractic issues, which progressed to unrelenting sensations of swelling on the right side of my head, pressure and swelling behind my right eye, and neck stiffness went away within a week. I don't see how 4 mg of Dexa a few times a week would fix that, do you? I passed every single neurological assesment at the hospital -- what I had isn't what they were looking for at any step in this process.
The only changes in neuro symptoms are myoclonus (roving limb twinges) at night in bed. These seemed to be related to the ommaya reservoir and treatment. I don't notice them when Im up and about. My neuro-onc seemed to think it was connected to progression.
I had a CSF flow analysis that showed full turnover of the CSF with four hours. Now my neuro-onc tells me that no treatment is getting into the posterior fossa. How can that be? It doesn't make sense.
Evidently, in spite of evidence that scar tissue and tumor are not easily discerned with gadolinium contrast and only 100+ cells are required before MRI will show tumor anyway:
IV Kadcyla is not working
IT Herceptin is not working
A strict ketogenic diet is doing nothing
Amazing that I produced this seemingly superior cancer cell line, no?
We are still going to meet with the RO to understand more about the options for brain rads. I am going to a different hospital next week because Incant stand my MO who took over for my MO who retired. I'm going to get more tests done and opinions from other docs before Indecide to irradiate my brain more. My head still hurts where I had the LINAC and it didn't do a damn thing to stop this disease. Maybe we should have irradiated the cerebellum back in September. Still, Intefuse to destroy myself in trying to save myself.
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Note that having surgery in the posterior fossa/cerebellum is associated with a ~40% increased risk of developing LM. LM is extremely rare and unstudied and IT Herceptin is completely unknown. A PCR to systemic therapy is not a consideration at all in the treatment of brain mets. Personally I find the practice of neuro-onc to be fairly miserable at documentation and far too little is published about any treatment options. No wonder women are dying from this dreadful progression.
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Thanks Agness/Ann for sharing all this information; it is very useful. In the last paragraph you write that leptomeningeal cancer (LM) is extremely rare. My wife has LM and I downloaded a few studies about it; one shows* that the percentage of all breast cancer cases with brain metastases, 12% are LM. Let me know if you'd like to get a copy.
Note*:
Ho VKY, Gijtenbeek JMM, Brandsma D, Beerepoot LV, Sonke GS, van der Heiden-van der Loo M. Survival of breast cancer patients with synchronous or metachronous central nervous system metastases. Eur J Cancer. 2015;51(17):2508-2516.0 -
Although rare, meninges mets are more typical for luminal cancers, especially lobular and signet-ring cell carcinoma; both these subtypes tend to metastasise to serous membranes, like peritoneum, pleura, pericardium and meninges. Luminal B IDC more often spread to pleura than Luminal A, but less often spread to meninges than lobular BC (LA and LB)
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Leptomeningeal disease is more likely in breast cancer mets than other types of cancers except for lung cancer mets. HER2 and triple negative are more likely to spread to the brain. Having the brain as the first site of mets is really quite rare compared to the overall population of cancer patients, breast cancer patients, and even breast cancer central nervous system mets patients. Having a tumor on the cerebellum develop into LM can happen up to 40% of the time -- but it is still a really small percentage.
Add off of this to the fact that brain mets is a completely under-researched area historically. They excluded us from drug trials, didn't know until fairly recently how to measure or quantify any successes and even now limit our access to certain trials and treatments -- many of which are standard from decades ago and don't confer increased survival benefit. It is appalling.
I have links up the wazzoo to studies about cerebellar tumors and leptomeningeal spread but they also say things like:
"Whether that favorable outcome can also be applied for Her2 3+ cerebellar metastases has not be widely explored because of their rarity."
You know that feeling when you don't know if you are having symptoms or if it is just the power of suggestion? That is me today. But I did just do my ballet workout just fine and my 5 yo kept me up half the night with his fever and bad cold -- poor bubby.
Hope you have a good day.
Ann
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Mets to brain are more common in HER-2 enriched and some kind of TNBC, but not to meninges. On the other hand, lobular cancers are more likely spread to meninges and other serous membranes, whereas ductal is more often spread to solid organs like liver, lungs and brain. Frequency of bone metastases did not differ significantly between ductal and lobular cancer, but differ between basal-like and luminal-like
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Agnes's- I believe they don't do pET scans of the rain because as you stated- the brain likes glucose. I think it would be hard to see a difference in uptake between cancer and normal tissue for this reason. Lots of artifact. I was one of the people who had a craniotomy to find out my abnormal tissue was just scar tissue. not ideal but it was definitive.
Sorry you are having such issues. I see a RO and MO At Sweedish if you want their info.
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Sure. PM me your docs names. I'm all about second opinions here.
The combined PET-MRI for the brain is a newer development and it can show differences in metabolic activity. Here are a compilation of reports from the RO conference this past year about this technology.
http://www.ismrm.org/15/program_files/TueSci18.htm
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cool
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Hi MamaRay. Sorry to hear of your progression. What type of brain mets do you have?
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Update on me:
My IT Herceptin dose was upped to 60 mg yesterday and will go to 100 mg once weekly starting next week. It is possible that the reduction in facial nerve pain was leptomeningeal spread snd that it worked in that case.
That said, it looks as though my HER2 cancer is growing into the cerebellum in multiple locations and that treatment isn't slowing that al all. Progression is about the same over the past two months. Disappointing doesn't even begin to cover it.
I have my consult with a new MO next Wednesday and they are going to get me in to see their neuro-onc ASAP. I see the RO on Thursday to discuss rads options.
I have requested expanded access/Right to Try to ONT-380. I might try for other things as well.
I am in email contact with a doctor in Germany about what they have to offer. They don't have the FDA in their way and they can do custom treatments.
My choices that I know thus far are:
- Get my brain irradiated in whole or in part which might kill the cancer or control its spread but will cause me permanent neurological damage in the long-term
- Get immunotherapy in the US?
- Go to Germany and do immunotherapy
- Do nothing and have a rapid decline
If I get treatment out of the area I will have to have my MIL come help with the kids and go on my own. Maybe my parents could come too to keep my spirits up.
So yeah, it really is that bad. I only wish my team didn't hesitate in October the way they did. There are many things I wish could have been different. Best to look forward.
Ann
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Ann,
I hope the start of the new year gives you, and your doctors, a fresh start on attacking your cancer. You are in my thoughts as you chart your next course.
Carrie
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wow. I have been away from the boards for a few days and so much has happened! More people to join us. I have not had a chance to read all the posts, but I'm Glad we are sharing our experiences.
I have to keep this post short because I'm typing from my phone, but I just wanted agness to know that you are in my thoughts. I'm so sorry that things have gotten worse. But you are going to beat this. You will be the outlier. And with your preserverance you are going to find the right treatment. You will get through this.
I start my fractionated rads to 2 of my lesions on Monday. I'll keep you posted and keep all of you in my thoughts.
Love to you all and here's hoping for a better year for all of us. Xo letranger0 -
Happy New Year Letranger, and many more to come! Good luck with your fractionated radiations on Monday.
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thank you, Giovanni! And same to you and Debra!
Love to all my brain mets sisters. Hoping to hear some more updates from everyone.
Xo letranger0 -
I'm still here, still doing okay. Big week ahead.
I wanted to share my findings. I'll add in citations as I have time but these are all from various medical articles and publications. In light of this understanding my case has been mishandled.
Info I have come across:
HER2 tends to metastasize to the brain at higher rates than other BC types, except for maybe TN
Compared to other breast cancer brain mets HER2 has a much greater affinity for the cerebellum
Surgery to remove a large tumor in the posterior fossa, that lower area where the cerebellum resides, is associated with a ~40% chance of having leptomeningeal spread
Breast cancer tumors beds in the cerebellum treated with SRS are more likely to fail with LM than other types of brain mets
Treating the tumor with radiation prior to surgery appears to lessen the risk of spread during a craniotomy.
When they treat certain brain mets with adjuvant therapy there is a lesser risk of disease spread. They don't do this with breast cancer however because they don't seem to treat the different types differently in neurology; a lesser risk in certain areas of the brain with more common breast cancers seems to translate into a lesser risk which isn't the case.
Oncologists are not familiar with targeted therapies or how they work in the brain. The newest studies they reference are three years out of date most of the time. This means they are reluctant to do adjuvant treatment with Herceptin post surgery.
Brain tumors are under-researched on the whole, to the extent that patients were excluded even from drug trials. Cerebellar tumors are less well researched by far. Leptomeningeal disease is not well understood overall and disease management requires rapid response to evidence of disease to control it.
Standard of care is to not offer brain MRI with contrast to breast cancer patients unless there is evidence of disease. Some patients and their doctors do annual brain scans anyway. Surveillance and evaluation of brain mets is really poor clinically. They don't recognize patients at higher risk and give greater warnings. The threshold for brain MRIs is supposed to be lower for HER2 BC patients but I have not seen that in practice, it really seems to depend on your doctor.
They don't understand the brain lymphatic relationship at all. The significance of the internal mammary node is not understood.
Their observational skills are really poor. They are looking for something specific but if you have other symptoms they are biased. When I had neck and shoulder pain or facial pain I was dismissed because it wasn't what they were looking for. If you think something is going on don't hesitate to be the crazy person because they don't have the ability to properly and objectively evaluate you.
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Happy NEw Year Agness/Ann, do you have a title or other references for the study from which you summarized all this info please?
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I will post references later as I am able. Here is one I have handy:
The risk in breast cancer is actually quite high comparatively and yet the authors claim no increased risk across the patient population of cancer patients with brain mets. Compare the number of breast cancer patients in the study with the number of breast cancer patients who developed LM.
"Leptomeningeal carcinomatosis developed in 12 cases (14%) and was associated with breast histology and infratentorial cavities (p = 0.024 and 0.012, respectively)"
http://www.ncbi.nlm.nih.gov/pubmed/254349400 -
I was able to get a hold of the head of raduation oncology at a different hospital that has Cyberknife today, k-lo's center.she is going to see me at noon Monday. Send good thoughts.
Ann
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good luck
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http://link.springer.com/article/10.1007/s11060-008-9791-2
Edited to add link above
Hi all,
I was wondering if anyone took xeloda concurrently with brain rads? I start rads today and wonder if I should continue my xeloda.
agness, chiming in here to wish you a successful and positive meeting with the onc!
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Thanks letranger.
Stopping by to let you know of something I came across that requires more investigation. I hadn't really thought of it but my 8yo was like if you have to do more rads to your head you should cool it down a lot so it doesn't hurt you (he's home sick with a bad cough and touch of bronchitis I think). I thought, why not look into hypothermia for brain rads. It turns out a lot of research did happen in this area in the 1990s but it wasn't put into clinical practice and I haven't determined why.
When doing operations on brain aneurysms doctors employ hypothermia. Evidently it is neuroprotective -- less damage and faster healing. Something that is critical when we talk about WBR. Here's one article. Anyone interested is welcome to dig around and report back. I believe the field of practice is called thermo-radiotherapy though the articles I have found seem more likely to reference hyperthermia -- excess heat.
[Protective effect of hypothermia on brain neurons of rats exposed to ionizing radiation].
http://www.ncbi.nlm.nih.gov/m/pubmed/17633550/
I also came across this article about the cerebellum and this great quote that I think summarizes our experiences with neuroscientists -- they are the definition of insanity, doing the same thing over and over and expecting different results. I am not a big fan based on my short experience dealing with them. It is embarrassing how little they have advanced treatment options in the past 20 years.
"The 800 attendees listened carefully as the panel made a collective assault on a neuroscience community blinded by years of prejudice. Nearly 80 studies were mentioned that suggest strong links between the cerebellum and memory, spatial perception, language, attention, emotion, nonverbal cues, and even decision making. These findings strongly implicate the value of physical education, movement, and games in boosting cognition."http://www.pesoftware.com/resources/movelearn.html
I will post an update later when I'm back from seeing the head of radiosurgery.
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Hey everyone. Happy new year ! We made it across the start line ! I have my last thank god WBRT tomorrow. I'm experiencing some brain swelling which I'm all-too-familiar with and I'm on steroids that come with their own problems but I'm kind a doing OK I guess. Not only am I completely bald again but now I have some radiation rash all over my forehead on the top of my scalp which is not fun.
Will be interesting to see what comes next. I meet with my oncologist Thursday to decide what chemo and when to start now but the blood brain barrier is open a little bit we need to get something up there. She had initially said she didn't want to blast me with chemo right away so I don't know if that just means a week or two or what I'll find out Thursday.
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Hey Lauralind, congratulations on your last zap tomorrow! You sound so strong, I am impressed!
I am on second round of Kadcyla and so dog tired that I haven't posted, but I just had to say hi.
Like you, I am singular so the MO said that there is no rush for chemo -- his target was 2 to 6 weeks after SRS -- but I saw no reason to delay.
My biggest worry for youabout platins is the nausea and vomiting so ask about really good premed coverage.
Good luck!
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Congratulations Lauralind5, and thank you for sharing. I don't know if my wife experienced any brain swelling during WBRT, but that may well be, because one day into the second week, for a few seconds she had the same visual hallucination that she had experienced during the seizure that led to the diagnosis of brain metastasis. She still tapering off from steroids, doing 1 mg of dexamthasone every other day now for the next week or so. I would appreciate it if anybody would share their tapering strategy. Here is the link to the article I'm following for advice from Medscape (it's the Google searchlink, otherwise Medscape asks for login credentials).
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I was singular the first time in dec 2014. Then 2 in October of 2015 that I just had CKS done. Then in dec of 2015 my follow up had multiple scattered in numerous tiny lesions so that's why the WBRT.
I'm not sure why she's thinking that I will certainly be asking !
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Lauralind, sorry, my brain doesn't work well, I meant to say that your mets are CNS only, so chemo is really to prevent systemic mets. TN is such a slippery fish, I hope that your WBR helps you. Last day today, then you can recover!
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heya all, yay for lauralind!
Split-bean, I was wondering about you and almost sent you a PM. glad you checked in. How was the Christmas market in Germany. I hear from our friends it is something we must experience.
Giovanni, good thing you have a plan for your wife to help her to taper off the dex. That little pill is potent. I weaned myself of too quickly last year and experienced a horrible decadron crash. I hope I don't have to take it again this time around. I'm hoping boswellia will work and avoiding inflammatory foods.
So, I had my first of five fractionated SRS last night. The mask is so tight that I can't even scream in it! I don't know how I will bear it again tonight. I have some scalp sensitivity, but that's always been there so I'm afraid it will get worse with these rounds of rads.
I'm trying to fast but can only do a 28 hour fast before I begin to feel nauseous. No sugar, no carbs.
Per Agness, I had a scoop of avocado and homemade electrolyte water. Greedily, I took a forkful of my son's salmon dinner last night. Lol. But today, So far no food. I think intermittent works best with my will power (or lack of) and that's surprising since I barely eat. But testing myself for ketones with strips and I am still in ketosis.
If you have any words of wisdom, please share.
Perhaps tonight I'll try to put a cold pack on my head....
Xo letranger0 -
hindsfeet, I just read that you has 19 lesions zapped without WBRT! Awesome!!! How are you doing?
Mamma ray, how are things with you
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