Brain Mets Sisters
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CAUTION - STATS ALERT !!!
For those who are interested in survival stats for brain mets, there's this calculator:
It is based on the paper by Sperduto et al 2012 which you can find online. It shows the complete data and explains how different types of mets have different prognostic factors.
I have the GPA Index as an app on my phone. My MO called it a priest in a pocket.
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I was given a 50% chance of living longer than two years and told that as if was good news. The stats are based on all age groups in all states of health, people who continue to smoke and eat crap and not. And, most often the results that inform docs are at least 3 years old and based on older treatment options.
Add to that the fact that they haven't met anyone like me, who wants to live and restored my health, uses science to do more than they ask, and have a weird disease progression and they are at a complete loss as to what to do. I just say be willing to take notes and work with me and let's solve this.
5 fraction down, 20 more to go. Hoping tomo -- plus everything else -- helps nuke the crap out of this cancer cell line once and for all
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Question: Are blood tumor markers useful for Brain mets with no systemic disease? I've never had them done but was thinking about what my RO said about seeding. If there are microscopic rogue cells in my undiagnosed, so far NED body, should I ask for this test? I went from 4 brain mets to 11. Where are they coming from?
I have a CT next week so maybe more answers there. But hoping I remain clear systemically. MRI in 10 days and new chemo starts on Jan 27.
Thanks everyone for posting all the info. This is a great thread with many of us on different treatment plans and personal treatment plans. I think all the sharing is useful and opens up great discussions.
xo letranger
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Let's talk about dexamethasone/Decadron...
Does your RO use it?
When is it offered and what dosage?
Are they familiar with Boswellia Serreta?
How do they monitor for cerebral edema?
Anything else?
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Both of my ROs have offered it for my brain rads. My neurosurgeon used it as well when I had my craniotomy and it was highly effective at reducing cerebral edema -- but I had bad side effects when I was on it for even two weeks including muscle wasting, weight loss, terrible acne that took weeks to resolve.
They started me at high dosage when I had my craniotomy. Then I went from 4mg at regular intervals down to 2 mg and less frequent intervals. I then switched to Boswellia.
They struggle with me but since I have a high tolerance for cerebral edema, and Dexa works against my diet? Immunity and it hurt me, they let me figure out my own dosing now. I found it helped with my ommaya port, especially when I was recovering from surgery. If helped also when I had IT Herceptin, I found pretreating the headache with Dexa, tylenol, and Boswellia made IT treatment a lot smoother.
They are somewhat familiar with Boswellia at my current radiosurgery center but they don't seem to prescribe it. Other team members seem okay with me taking it but don't know anything about it. Even my naturopathic onc was less familiar with the dosing for brain mets.
The only way I have seen them monitor for edema has been with MRIs.
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Agness,
I had SRS twice and no dex was prescribed. RO said no need for it. Actually the first time I had SRS, I complained about headaches so my MO put me on them. I hated to do it but I was concerned about swelling so I took it for a short time. I took 4mg per day and unsuccessfully weaned myself off of it. I had a bad decadron crash. I did not give myself enough time to dose reduce properly.
I don't like dex and would like to avoid it. My RO said to try acetomenaphine for my headaches. So I am taking 10-325 right now and it seems to help with the headaches. He also suggested zofran and compazine for my nausea, plus ativan before every meal for my troubles with eating after rads.
Dex is a powerful drug and pehaps with all your rads, it is recommended. I had 2 days of SRS in 2014 and 5 days of SRS from Jan 11-15, 2016. I threw up for 2 days after rads and now again today.
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Totally weird advancement in testing disease with antibiotics that target the mitochondria. Zithromycin (z-pack) and doxycycline (prescribed for Lymphedema cellulitis) are both very common. Tetracycline is commonly prescribed for acne.
Can you imagine?
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On MRI sensitivity and why it doesn't work for brain mets well, they did this study of animals and found that you need disease massing in order to see cancerous lesions. This is part of why I was misdiagnosed, a lack of understanding (bizarrely) of the capabilities of the imaging. My neuro-onc still thinks I have involvement within the parenchyma of the cerebellum and she's wrong, it's all on the outside.
"Leukemias, lymphomas and most solid tumors become clinically detectable when approximately 109 cells are present. If 99.9% of the cells are killed, the tumor can no longer be detected even though 106 cells (1gm) remain. This is why long courses of therapy are needed to effect cure. Each treatment may diminish the tumor cell number by 2 or 3 logs."
http://www.dcavm.org/02june.htm0 -
Letranger,
I tried to manage tapering from dexamethasone more gradually than bot RO and MO doctors recommended, lest it would alter the body's own cortisol production: see this article at section Dexamethasone tapering. My wife started from 16 mg/day (four 4-mg pills.day), and I reduced by 4mg every 5 days; I then split the 4-mg pill in two, and reduced to 2-mg a day; I further split the pill into 4/4 of 1 mg, and tapered to 1/4 every other day and then 1/4 every third day. I noticed how moodiness in my wife changed between days on and days off.
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Agness/Ann,
The link from dcavm.org isn't working for me. Is the quotation correct? It doesn't make sense to me, that's why I was trying to read it directly from the page.
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Split bean - thanks for posting the link to the stats calculator. I was curious, so I put in my information and it said my median survival was 15.1 months. I'm at 45 months and counting since my brain mets diagnosis. You never know with this crazy disease.
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GC, thank you for the dex info. I just printed it and put it in my med box in case I need to use it in the future.
Nancyh - yay! That gives us brain metsers some hope and positivity!
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that is the link and reference, though it is broken, I thought I tested it a couple weeks ago.
Here is a book reference to MRI sensitivity:
https://books.google.com/books?id=_Q3DLFaBdn8C&pg=...
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anyone else dealing with N&V after brain rads? I can't eat anything without throwing it up within 1 hour. It starts with a dizzy feeling so it's all triggered from my brain, not my stomach. Threw up 4 times today. Going to stay away from solid foods. Drinking Gatorade and ginger which helps. TMI:Had vomit in my nose too.
If you have any advice, please share.
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No advice, just hugs. Puking sucks.
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Split-Bean and NancyH,
The Graded Prognostic Factor uses the Karnofski Prognostic Score (KPS). What number did you use for the KPS? I used 90 from this table.
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Nancy, you are AWESOME.
Lauralind and letranger, our poor puking pals, popscicles from all of us, we hope you feel better soon.
GC, the KPS tables are indeed very vague. I wonder how much the KPS reflects the presence and extent of systemic mets. What I get most out of the GPA are the 75th percentile survival times. The median survival stats are just too depressing. I get hope from knowing that 25% of us will live even LONGER than the 75th percentiles -- like our heroine Nancy!
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Brain-scan-watch -- because we care (not because we're nosy!)
week of 1/18: letranger
1/21: me (3 months post-op!)
1/25: letranger & spicypetunia
Don't miss the fun! Add your name today!
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thanks Split. Definitely like the brain scan watch calendar and looking out for everyone.
So GC, when I entered in my info on my computer,strangely it did not ask for kps. But from my phone it did. I used kps=90. Played with it a bit and discovered that triple pos has best OS ( not me, I'm ER/pr neg and her2+.
At dx in June 2013,my MOsaid they were going to throw everything at me but the kitchen sink. She said I had a 2 year watch window. She hoped for clean scans. When I was dx'd with brain mets in November 2014, onc said she would not predict my OS. Then in July 2015, when I got more brain mets, she said it's a good idea to set up POLST and set up family Trust but she said, we all should, especially since I have a young child, 4.5 yo. She says she did hers 10 years ago. I asked her, " how long do I have?" She said no one knows and she was not going to give me a timeline. But we could die in a car accident tomorrow. She says she does not have a patient like me, so we're hoping for the long haul. My onc is exactly my age, 42.
So, yeah, I look at the stats, and this is waaaaay better than old stats in old research.
But another question, on top of the many q's I have: what do you think about when cancer suddenly gets aggressive? It seems that some young women on the boards were doing fine and suddenly cancer just got aggressive and chemo could not control it? Any research or info on that?0 -
GC - I used 80- 70 for the calculator, but I was a 90 when I got my brain mets back in 2012. Honestly, I never thought I would have survived as long as I have, mostly because my liver mets are huge, but somehow I still keep bumping along. I have been incredibly fortunate.
letranger - I'm so sorry about your nausea. I'm guessing you're probably taking everything they can offer, so you might already have tried this, but adding 4mg of dex with zofran, compazine, and lorazapam might be worth a try. The decadron potentiates the action of zofran (and compazine...I think you even said that in an earlier post). Another idea is Emend. If you end up going in for fluids, you could ask about it. Also, if you aren't already doing this, you might ask about omeprozole twice a day. Sometimes acid reflux contributes to nausea, so it might be worth a shot.
Good luck with scans, everyone. I'm due for one soon too, probably early Feb.
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Letranger,
The Graded Prognostic Assessment (GPA) is a plain sum of the three factors (age, hormonal subtype, and KFS): the higher the sum, the better off one is. You can see how these factors interact form the table contained in the study. So for age younger is better; for hormonal subtype, triple negative is worst, ER/PR HER2 negative positive is a little better, triple positive is even better, and ER/PR negative HER2 positive is best; for KFS the higher the better. You then sum up the three different sub-scores and obtain the total score, which tells you on what curve you are (check out figure A).
NancyH, I think you should use KFS 90; it makes a difference of 0.5 which may or may not put you on a different curve. Thanks for sharing.
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letranger, I was pondering your question with dear Torridon's death. Her initial dx was Grade 2, but her last progression was apparently extremely aggressive.
My initial cancer was aggressive, but I'm seeing some positive signs that these mets aren't as much. From the onset of my very first symptom (a wavy line in the corner of my vision) on Oct. 22nd, my symptoms did not progress, at least not in ways that were clear to me or my loved ones. Instead, they were sporadic, but caused enough background noise that I knew I needed to get checked out. In fact, I'm currently symptomless, due to restarting Clonazapen over the holidays. Although I take it for anti-anxiety, it suppressed my mild seizures. It is a blessing I ran out of it and didn't renew the prescription until I had already dedicated myself to having this scan.
It's also a blessing my husband was considering an over-the-road trucking job (no green light from wifey unless scan was clear), my new job raised questions about switching my health insurance and my one-year derm appt. (I do them because it's an easy way to screen for secondary cancers) had the assistant telling me that his mom had died of brain mets because she waited to long to tell her onc that she was having symptoms. As well, my grandmother passed away a day after I emailed my onc requesting the scan. If she had died before, I may have chickened out, not wanting to put my family through two traumas in one week.
The KFS seems to debunk the "it doesn't matter when you catch mets" theory, which I have long maintained in the case of brain mets is bull. And I am no stranger to denial, I had strange pains in my right hip/groin for over a year I never got checked out (turned out it was clear after all). I fully believe that there should be a new standard of care of screening specifically for brain mets in high-risk patients. This "let me know if you have headaches" shit isn't cutting it.
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I have such a hard time with survival time lines, especially this week with losing both Holley and Torridon.
So much about this disease makes no sense to me. I had a tiny tumor in my breast, with no nodes involved, and yet ended up with a brain met?!
Everytime scans are clean and tumor markers are low, I say a prayer of thanks and yet still wonder when the other shoe will drop. Live like you are dying takes on a whole different meaning when you have stage 4 cancer.
I know I am rambling a bit...just lots of thoughts bouncing around in my head on this Sunday afternoon.
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Love this thread and my brain-y cyber friends. Thanks for the tips on handling my N&V. Seems like today is....Puke-free! Can I get a thumbs up!!!! I was able to keep down some soup. Stole some of my son's pedialyte, too.
GC - really admire that you post for your wife! My hubs started on the Her2support website but could not stomach the losses and what we BC women go through. It is enough for him to see me go through it. He's positive I'll make it through this hurdle. I love his positivity. I read stuff online and he goes out and buys me whatever I ask for. So really appreciate husbands/partners like you.
Goodie - "Live like you're dying" - yup, really hits us stage 4 gals hard. You're not rambling. Please continue to think out loud with us. I;m so happy that I have you all out there. This is so scary.
Bad- definitely need new approach to high-risk BC women. I had a huge tumor with 1 pos node. My Breast surgeon shook his head and said,"That should not be." meaning that was not a good sign. He predicted mets but left to my onc to deal with that. He scooped out all the cancer and I finished treatment. But I researched mets the whole time. Nope,was not fooling myself either.
I have a body CT scan on Friday. Ugh. I have been NED systemically, but I am already an emotional mess. Hoping my body remains cancer-free. I live in 6-week gulps. Scans that frequently- that's what you get for being a "lab rat" in a clinical trial. I can't even work. I used to be so motivated and a multi-tasker. Now, I do a few projects from home. It's all I can handle. I'm always stressed out.
xo letranger
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For letranger...
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Lauralind, how are you feeling?
Milo, how is your radiation coming along?
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Here's s study from 2015 about monitoring for brain mets in BC patients That is a "good" read.
Management of solitary and multiple brain metastases from breast cancer
I know the 2014 ASCO guidelines for HER2+ brain mets is based on recommendations only, which is incredibly weak. I want to know who is responsible for not screening is BC patients at high risk of brain mets progression. I completely agree that their strategy of "tell me if you have a headache" is entirely naive of CNS progression. If we have a headache it is too late, drastic measures are called for. Not telling patients that they are high risk (hello my MO) is also incredibly patronizing.We have to get these standards changed and in the meantime we have to empower high-risk patients to lie if that is what it will take to get proper screening.---Hi everyone. I hope Monday treats you well.Ann(1/5 done, 20 fractions to go)0 -
Hey everyone !
I'm feeling shitty. Sooo tired. I hate it ! I keep doing pushing because that's just who I am but most of the time if im up moving I'm in a fog. I'm trying t figure out what symptom is coming from what.
My brain seems to be wOrking pretty well. Sometimes my speech is a little off like my tongue is thick sorta. I need to start taking the memantine.
Agness etc I'm on decadron for brain swelling but on my taper now thank goodness. I have heard others take boswelia with good results and their RO blessing. I would but it has some properties to it that I cannot tolerate.
Emotionally I've been a wreck. These deaths from our sisters have hit me hard. I'm sure the steroids aren't helping. But it's like they are going along doing ok even NED and in a months time boom gone. Wth.
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Laurlind5,
What are the bad Boswellia properties?
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good find, Agness!
10-35% Chance of getting BCBM should be alarming to researchers and docs!
Hoping we, brain metsters, can update the RTOG data and be the modern patient groups. Yes, there are a lot of things that contribute to our OS. Immune system and diet are linked! We need more oncs that are willing to accept this connection and stop telling us that we can eat whatever we want during chemo and rads.
Thanks for the thumbs up, split.
Also wondering how Annett is doing
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