Brain Mets Sisters
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Cheers all,
I'm a newbie to bain mets... recently (mid December) diagnosed with numerous brain mets, NED in the body (based on what they saw in the December abdomen / chest / pelvis CT and scintigram). Was diagnosed HER2+++ Stage IV with limited bone mets only (1 or 2 in the spine, possibly a small one in the sternum) in March 2014. Responded well to Taxotere / Herceptin / Perjeta / Xgeva, stable since then on H+P with 3-monthly Xgeva only. Have recently been havng some pain the the breast where the original tumor was (got a lumpectomy, as they thought it was "impossible" that I'm stage IV when first diagnosed, so they did surgery first, then scanned). Now, that could be because I got my period, or scar tissue, or whetever, but I'm concerned as a local recurrance would explain that more spots show up with each scan, wouldn't it?
Some history on how I got to join this club: I had asked my MO to check the brain back in July last year (just thought it was a good idea, no real symptoms). He said no. Repeatedly. So I went to my family doc and asked him. He ordered a CT, which in July came back clean. Then at re-scanning in December, MO apparently just said to "do the same scans you did in July", and bingo! The chap is still wondering how the brain CT came about...
Initially, they had seen 9 mets (4 measurable, 2 of which at 10 mm and 5 mm in the cerebellum on either side, one each in the temporal lobes; the remainder are "specks", but apparently pretty much all over). At that point the radiation onc told me he would do SRS. Then had to go back and have another - more detailed - MRI and lo and behold! they found more. Count is now up to 15, apparently; the found more "sprinkles". That disqualified me for SRS; starting WBRT on Monday. I am convinced it is not the right treatment. My suggestion was: SRS the 4 larger ones that are a reason for immediate concern. Then do something systemic (such as Capecitabine + Neratinib, or Xeloda, or Eribulin) in conjunction with D,L Methadone, or IT Herceptin. Quoth the RO "I will not do SRS on you. If you are not treated, you have 2-3 months."
So here I am: WBRT starting on Monday. This sucks. Is there anyone in this forum where WBRT actually helped? RO says he will do SRS on whatever will crop up post WBRT... Then again: he said he would do SRS initially...
Sorry for the "novel", but I'm really scared right now. I need some more time - my daughter just turned 7 in December...
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Welcome newbie from another newbie. Your RO sounds like a quack and I would normally suggest firing him and getting a 2nd opinion, but then I saw you are in Canada. I don't know how the process works there, but I've heard it's harder to get 2nd opinions. Hopefully another Canadian will chime in, but I would encourage you to fight to see someone better, no matter what it takes. I'm sorry for this shit. ((((Hugs)))
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I had a craniotomy for a large brain tumour plus WBRT for several smaller ones in July 2014. Nothing in brain since. No signs of cognitive problems and I have continued to work pretty much full time.
So yes I think WBRT helped.
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annettechen - I am NED from the neck down but last week my team gave up on me. I only have disease in the cerebellum. I fired ghem this week and have a new team now.
They don't know HER2 brain mets. Ive talked to specialists, sent my scans to HER2 brain mets researchers and they all missed it snd so progressed -- all while I couldn't get any treatment
I am starting tomotherapy to just the cerebellum this week. With 19 lesions and early stage disese they absolutely can SRS the spots. Why not treat the disease where it is rather than where it isn't?
Switch to a Ketogenic diet ASAP, find a different RO, get IV Vitamin C, and take mushroom extracts. You want to increase the efficacy of oncology treatment by doing more.
How's your health overall?
Ann
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Hi Ann,
we cannot give up. And when we don't, neither can our docs.
Overall health is great, I'm physically fitter than I ever was. Good weight. I'm strong. Do have some trouble concentrating, and today have a bad headache - could be weather related - it's been crazy up here in Canada. I go horseback riding 3-4 times a week. I work full time (when doc appointments allow). They don't see progress anywhere but in the brain (hence the thought that IT Herceptin would be a good idea - H+P manages it well anywhere but in the brain). The lady at MD Anderson whose name I got from Paul says she will not treat me, as it's brain mets. She claims IT H only works for leptomeningeal (which I don't have). Believe me, I tried...
I have read about ketonic - some voices say it is actually counter-productive. I'm cutting out sugar, though, and refined carbs, reducing other carbs as much as possible. What mushrooms are you referring to? Can I get that in Canada? Online order?
Thanks!
Annette
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Ann I had a craniotomy for a solitary lesion last year followed by CKS. In oct I had CKS for 2 small lesions. Then my follow up scan in December showed multiple tiny lesions that he felt was best treated with WBRT. He assured me it wasn't "end of the line" approach but that it was microcellular and this was the best way. I am treated at a big research medical center.
I just finished the WBRT last Tuesday. Right now the fatigue is kicking my ass as I was warned. I keep moving as much as possible though. I've also just started tapering my steroids.
I am going to start memantine next week,an Alzheimer's drug that has been shown to prevent cognitive issues. My only issue in that way now is I say the wrong word occasionally. Like I want to say awesome and awful comes out.
I start weekly low dose carboplatin next Thursday in hopes to cross the bbb
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Agness, what should someone who has brain disease who is also highly ER+ do dietwise, since keto encourages full fat dairy and meat while eliminating certain veggies? I already do a lot of olive oil and olives...unfortunately don't like nuts. Could make myself like them though
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bad-at-user-names - the brain met gal who put me onto the keto idea came to it from having been a vegetarian, she said the body has a greater tolerance for vegetables than the reports and diet dictates state. When she went out of bounds she would take extra fat to smooth thing over and she also found that she could take ketone supplements if she was way out of bounds.
I can't vouch for her experiences but I have employed some of her ideas and so far my body had been in agreement. As long as I'm not eating grains and very small quantities of root veggies my body doesn't shift gears.
I don't have it in my bookmsrks but others are doing Keto with a vegetarian diet. Just do a search online.
Ann
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I need all advice I can get:) I have been lucky enough to tolerate 28 rounds of Doxil after my TNBC returned in Sept 2013 and I felt great I worked full time and did spin class 4-5 days a week and had a "normal" life for a stage 4 cancer person. My good luck ended on Jan 6th when I passed out at work and was rushed to the ER and then learned I have 13+ brain tumors. On Fri 1/8 I had a consultation with a radiologist (same practice when I went through radiation in 2012). On Mon I start total brain radiation for these tumors. My radiation doctor says I need 15 treatments of radiation and I will lose all my hair. I am on steroids and anti seizure medication right now. I am currently scouring all the mets discussion boards for helpful information. This is so scary and sad. What do I need to know and where should I start reading? THANKS!
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Oh no Milo I am so sorry you are going through this. I am beyond angry. Nobody deserves this.
I trust that you have already had the SRS vs WBR for multiple mets talk with RO. Other sisters have discussed this issue just recently. They have been down both roads and know the way.
big big hugs
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I haven't finished posting but I started a thread with links to other things you can do to help fight brain mets that are outside of what your oncologist will offer you. Yes, both HER2 and TNBC have a high rate of brain mets. I'm very sorry you have to join us but this is a great group
http://www.her2support.org/vbulletin/showthread.ph...
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Anne- if you are uncomfortable with wbr look for a rad oncologist who will do gamma knife for multiple tumors. New studies show that this can be done. I did a little research after the rad-oncologist said no and sent him the research. He did more research and said that newer studies show that Gamma Knife is the way to go for multiple tumors. He said that if I did wbr I would have to take meds for Alzheimer' the rest of my life and even then I would have dementia and possible other side effects. Over time it only worsens. He said wbr is the last resort. I'm only sharing this for newbies coming aboard in that this is an option. You have to do your homework and or find a doctor who will do it.
My doctors said without brain radiation I would die within a few months. Not only did the recent gamma knife zap my 19 tumors, but it left my good brain intact. I don't have to take Alzheimer's meds, which has side effects. I've another at least 3 months of normal brain function before the next brain scan.
If you can't find someone who will do it then contact me and I will give you my doctors name, and or help you any way I can. I don't think we should have to suffer more than needed.
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I've had disease progression on the outside of my cerebellum, it has also started massing inside the folds (folia) and in the larger cracks (fissures) of that part of my brain (low back cranium aka posterior fossa or infratentorium - https://en.m.wikipedia.org/wiki/Tentorium_cerebell...).
Meet the cerebellum:
http://nba.uth.tmc.edu/neuroscience/m/s3/chapter05.html
https://en.m.wikipedia.org/wiki/Anatomy_of_the_cer...
Since MRI can only see massing of 109 cells or more, and because no one can see why I had facial nerve involvement nor see why it resolved with intrathecal Herceptin, we are treating the entire cerebellum.
If they had given me adjuvant treatment like I asked back in August, or irradiated a larger area outside of they tumot bed, then maybe they could have prevented this. We are only treating the cerebellum, where there is disease presentation; there is no evidence of disease outside of the posterior fossa.
I haven't yet met a single person who said don't do rads, though my team (that I fired) said nothing was working and whole brain was my only option -- though they agreed I wouldn't be able to care for my kids in two years with WBR. They said I was going to crash quickly. They were wrong.
I have been working on healing and restoring my body since my diagnosis almost two years ago. If anyone's immune system will listen to anti-HER2 immunotherapy its my body. I just have to fight back this malignant cell line and then I have a shot. Maybe rads will be enough with all of the complementary therapies and strategies I'm employing. Maybe I'll need more systemic treatment.
I was given 4-5 months to live last week, or less -- and yet I'm going to try to beat this.
Tomorrow starts my 5 weeks of Tomotherapy. Wish me luck and pray I can chill my hair follicles enough to get some good regrowth in April.
Ann
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Good luck Agness. I can't thank you enough for all of your generous sharing of information.
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you are most welcome.
Okay, seven hours of sleep and we are back in business...
I was reading with interest about the cytotoxic agent Topotecan. It is being used intrathecally with IT Herceptin and shes been NED four years after an LM death sentence. I asked about it several times but my neuro-onc didnt add it. Perhaps I should have put my foot down but then we think we are dealing with professionals...
http://www.brainmetsbc.org/en/content/magic-happen...
Topotecan has been in use for quite a while. It has some unique properties including its ability to pass through the BBB -- and yet no one here has been offered it that I know of. It can also do things intrathecally that methotrexate, a large molecule, appears to be unable to do. Why is no one on this? It seems worth a shot, especially for those with fewer options than with HER2. It also appears to increase the effectiveness of rads against brain tumors - so why arent we being given this option?
If I have learned anything from my stage 4 sisters it is that the correct drug can make a huge difference in outcomes.
Some links:
The Role of Topotecan in the Treatment of Brain Metastases
http://theoncologist.alphamedpress.org/content/9/1...
Breast cancer brain metastases: new directions in systemic therapy
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC364642...
Topotecan Chemotherapy in Patients with Breast Cancer and Brain Metastases: Results of a Pilot Study
https://www.researchgate.net/publication/11887063_...
Topotecan
https://en.m.wikipedia.org/wiki/Topotecan
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Bad-at-user-names: Our situations sound similar. I had a solitary brain met that was present at my initial diagnosis but diagnosed as a cavernoma by 4 different docs. In February 2015, it caused me to have a seizure and when my neurosurgeon was performing the craniotomy, he discovered it was a brain met. It's pathology was identical to the tumor in my breast. I had GammaKnife to the tumor bed in March 2015, and have remained NED since then. Good luck as you start on a journey that no one wants to be on...
Agness - you remain in my prayers. I admire your fighting spirit and "won't take no" for an answer attitude. Much love to you.
Milo: I'm so sorry you are here, but may you find comfort within this thread from others who truly understand.
I've had a frustrating week with insurance issues. I was to start my lupron shot this past Friday but do to some huge insurance mix up, it looks like it will be the 18th before I can start. I HATE dealing with insurance issues on top of everything else we have to face. This insurance problem has been ongoing since I took a promotion and switch departments at work in October. I'm stopping in my HR's office first thing today to get it straightened out once and for all.
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I have body scans tomorrow. First ones in two years. How likely is it that I'll be one of those brain mets only people? I have no symptoms except the minor aches and pains we all have from this crap and my blood work has always been good. Worried a little about R hip. Been a little achy lately. But I also have taken up cycling and weight lifting. I'm scared. Can't take more bad news. Strangely, lung and liver mets have always scared me more than brain. And bone mets tend to jump to organs. Holley kitchen started out with only bone mets..
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Giovanni, did your wife go from Stage 0 to mets
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I have brain only and so do others here. It is totally possible. Be kind to yourself, treat yourself, and get through this stress time. I wish you clear sailing.
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I am a totally healthy person except for the HER2 that is growing in my cerebellum. Well, except for a uterine fibroid thst Ive had for 10 years and through three pregnancies, and an ovarian cyst and some injuries to my ribs and shoulders from chemo.
I hope you get a clean scan tomorrow. It can totally happen, in fact I've heard its rare that disease comes out if the CNS once it goes in. More than one oncologist has mentioned that to me. Fingers crossed.
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My spinal MRI came back clear last week. Phew! I got my first tomo done, it takes about 10-12 minutes between set-up, x-ray, check position, give treatment. Only 24 more fractions to go.
I am doing intermittent fasting where you stop after dinner and then don't eat again until midday the next day. Ill stay in ketosis and try to get my calories up during that time. Its too many weeks to do water-based fasting. I could lose a but more and still be healthy but I don't want to plan on that. I'm sitting at home with my cold cap on and earlier I made up some fat bombs -- fatty treats to fill out your calories and satiate your sweet tooth (with stevia). Im trying to figure out what to eat tomorrow because I will be hooked up to an IV for hours while I get my first vitamin C.
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Hope everyone else is doing good.
Ann
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Good news for once. Two weeks ago I told my doc that I had odd shooting pangs and twitches in my legs. Its like when you are falling asleep and your keg jerks but more subtle, still infrequent but more than normal and more on the right side. My doctor assumed this was a symptom of my progression and determined that "nothing was working".
I realized this morning (keto has me up early) that those pangs have almost completely diminished in the past week. I think it is the Herceptin, plus everything else I am doing. It isn't because of the rads as I've only had a single dose.
I have to figure out how fast IT Herceptin flushes out because I might still want to do it Friday afternoons if it will be gone by Monday's treatment. I hesitate to stop rads because of the disease massing in the folds of the cerebellum.
I wonder if they will give me an MRI this week of the head...
I was just making coconut oil fat bombs, a great addition to the keto diet:
http://lowcarbediem.com/fat-bombs-recipes-atkins-k...
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Bad-at-user-names, like Split said, there are several of us that had only brain mets. Keep the faith.
Ann - glad to hear you are seeing some improvement from treatment and the diet.
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sorry for all my posts but I want to share when I find cool stuff.
I started taking Boswelya Plus after I came off dexa in August, after my craniotomy, and I am still taking 1200 a day. It is a boswellia serreta supplement which my naturopathic onc signed off on -- he noted that ayervedic herbs like Chinese herbs, work best in combination. It also helps with arthritis and my shoulders show pre-arthritic spots on bone scans after chemo (I take no anti-hormonals and I got my period back 5 months after chemo so it isn't from tamoxifen).
My friend came across this article by chance and the LOX reference I hadn't seen before. A patient healed from BC brain mets with just boswellia evidently. I wouldn't not do regular treatment but if you arent taking boswellia it might be worthwhile to add in to your regime. It can be taken with or instead of low dose dexa.
http://www.rainbow.coop/library/lipoxygenase-inhib...
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My neurosurgeon put me on Boswellia too after my craniotomy. It has really improved my various aches and pains associated with the anti-hormonals and also just aches from being 51. My medical onc said that they are seeing a lot of promising research on Boswellia and encouraged me to continue taking it.
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Agness/Ann
I searched the terms Boswellia and brain metastases in PubMed.com, but only that article came up, which is perplexing. If the article came out in 2006, I thought there would have been more doctors trying it with their patients, and writing articles about their resutls.
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Bad_At_usernames,
My wife went from stage 2 to bone mets to brain mets.
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I hate hearing about early stagers who get mets because my mom is an early stager. Double anxiety.
Body scans done, playing the waiting game..
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In addition to learning my TNBC moved from breast to spine and now my brain, I learned my radiation treatments to the 13+ lesions will cause me to lose all my hair again so I will need to buy another wig. I hate to do spin class in a wig and summertime I the south is too hot for a wig but I live and work in an area where I need to look 'normal'. How long before my hair will begin to grow back? Medical onc says I start xeloda 2 weeks after radiation. He says it will be pills so no transfusions.
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Milo, before I moved to the country and got my Dx, I LOVED my spin class. It was my special time reserved just for me! But I imagine how unpleasant it would be to sweat in a wig. Even if you wear a wig to work, could you wear a funky head scarf made from nice breathable material? You spin for you, not for the other people.
I lost a stripe of hair on the side, like the scientist in The Fifth Element, but the rest was shaved for surgery anyway. I read that it would be a few months to grow back. In an ideal world, we could make our own choices and not worry about judgement from others.
Big hugs
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Giovanni - here are more links about Boswellia. I would guess that it hasn't been studied because there's no money to be made.
http://onlinelibrary.wiley.com/doi/10.1002/cncr.25945/full
http://www.treatingglioblastoma.com/supplements/boswellic_acids.htm
https://en.wikipedia.org/wiki/Boswellia
A different type of Boswellia:
Frankincense oil derived from Boswellia carteri induces tumor cell specific cytotoxicity
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