Brain Mets Sisters
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Oh Mara, thank you so much for your response. It would be wonderful it is an SE of Faslodex but I started in mid Feb and these symptoms appeared about 2 weeks ago. It may be cumulative though. I try to be patient but results take a long time where I am. I will keep you posted on the results.
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Thanks Linda. It is tough waiting for sure. I would honestly worry more if you mentioned weakness or being dizzy with an unsteady gait but what you are dealing with now is bad enough. Will be hoping for clear brain scan.
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Brain scan is clear. MO is requesting brain MRI to further investigate swollen tongue issue. Also seeing a maxillofacial specialist next week to try to figure this out. Mara - I read on the Fas prescribing information that less than 1% of users have issues with angioedema/swelling.
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Hi Ladies,
I hope you all had a nice holiday. We got news that my mother's scan showed one small lesion left after the wbrt she had in Dec/Jan, but also one new spot outside of the brain. After being NED in her liver for a while, it's back there and possibly her bones. She starts chemo tomorrow and will be put back on Taxol and Carboplatin. She has also been taken off Femara and put on Aromasin. She just spoke to her neuro onc who said that her medical onc is doing the right thing and the carboplatin should help with the spot outside of the brain and to scan again in 6 weeks. Has anyone else heard of this? Is this possible because it's outside of the brain?
Tracey
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Linda, happy to hear the scan was clear. Hope they can get the tongue/speech thing figured out soon. Thanks for the update, best of luck.
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Hello sisters,
I am posting for a dear pink sister that just learned Wednesday that her Triple Negative cancer has come back in her brain. She had a PCR just 8 months ago. I am meeting with her tomorrow. The plan is brain radiation. There are several spots, none of them large. What are some helpful questions I can jot down for her to ask her oncologist next week? She is young and has 3 young children at home. Thank you for the counsel.
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SA8PG,
I would ask if they are going to be doing whole brain radiation (WBR) or GammaKnife radiation. GammaKnife is able to just zap the spots that show up, and is often used before WBR.
I would also recommend you ask her oncologist for a referral to a neuro-oncologist. It's best to have a specialist on board for brain mets.
Best wishes to your friend.
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Thank you Goodie. I will share that with her. I appreciate you taking the time to help. Hugs & Love to you.
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Goldie has good suggestions. I would add to ask about potential medications/treatments that might be prescribed after radiation treatment.
Also ask about what medications will you be placed on because if the treatment to the brain like steroids, and anti seizure Meds if she isn't in them already. These have their own side effects and discussing ways to cope with those are helpful.
Best wishes
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Just thought I'd share some good news with you all. I had a brain MRI on April 26 to check and see how well the radiation in January has worked. I got the results this week and all the little spots have completely vanished, the cause of my seizures has reduced from 1.5 cm to 6 mm (!) and the largest tumor is making progress from 2.7 cm to 2.5 cm. I could already tell there was improvement (no seizures, facial tingling gone, headaches departed), but it's really nice to know how well it has worked. My bone scan showed some increase within the bones already affected, but no new bones are involved. My CT scan didn't come out as well, with significant progression in my lungs and some progression everywhere else. I am joining a phase 2 study of Atezolizumab with or without Entinostat in patients with advanced TNBC (https://clinicaltrials.gov/ct2/show/NCT02708680). I was already interested in immunotherapy. Now we shall see if it works for me.
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I am happy to hear the good news for your brain scan, sorry to hear about the progression elsewhere. I hope the immunotherapy is just the ticket for you.
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rgc, mixed results are so frustrating! Hope the trial is a breakthrough!
Hugs!
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rgc yeeh for the good brain scan results. so sorry for the progression in the bones. Everyone seems very interested in the trial they wanna put you in, when would they be starting it? It sounds very promising.
Waving to all.
Tre4 just saw your post, I wonder what direction you guys went. These chemos you mentioned, of course are very good treatments. I don't know your mother whole History, but hopefully they could do the trick. To be honest, I am not sure Oncologists or neuro onco reeally knows what works in the brain area. They try this and that. It's no different than anywhere else. They tend to radiate when it's really impeding in a sensitive area, or someone is in a lot of pain, otherwise it's guess work or in some cases surgery.
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its so wrong to say that i didnt know i had brain mets...oh i did,i just thought they were going away and all i had was dead tissue from the gamma knife...we were all wrong....the one we treated last summer decided to balloon in size/pressure and the routine scan saved my life last week....all that surgery hit me so fast, i wish i had looked into this possibility alot sooner.....I will keep reading and i urge all to never stop educating yourself even if you dont think it applies or it hurts to much to learn about.....you may need all this info tucked away somewhere....you are all in my thoughts tonight...pleasant dreams
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Nan812 i could literally feel your angst. So sorry. Where exactly is the tumor that mushroomed located? So what is the plan? What surgery? what was your last treatment? we will try to walk with you.
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it is so scary. As I've said, I'm new to this part of mbc. Docs seem so sure of how to handle bone mets. This all seems so unclear-especially since they don't seem to know for sure if it's LM or not. I see my MO today. I have had extreme fatigue in the month sincemy brain rads. I may just need patience. Just very unsure of what is happening now. Hard to take the "wait and see" attitude, but I guess that is the only option.
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Kaption so sorry, yeah, the not knowing is just as bad as the knowing. Fatigue is def one of the things to deal with the Rads. Hope to hear good things. Is there anyway they could do a study and check if it's LM?
D is having MRI at the end of the week. I am very anxious about it, because her CEA has been creeping up. It will be after her 3rd cycle of the new treatment, which I know for sure was a shot in the dark. They have no studies to show that the tx is guided for her type, but who knows what type means anymore?
Hope you hear good things.
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kap, they had me take a wait and see atti. but all they wanna see is if they can rad it again or not.....this was a 4mm spot for almost a year.... how can you plan for brain surgery...I couldnt even think about it and no one ever suggested it untill they saw a 2 cm golf ball glowing in my frontal lobe and abut 6cm of solid black edimia pressing around that strait into my brain....oh yes I was so taken by suprise and now what...dr appts at the end of the week...Ill keep you updated.
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Kaption, I am sorry about the fatigue. Even when rads happens to one part vs wbr, it still takes a long time to recover. The radiation can work for months, that is tiring enough. Your brain will also be healing.
If you can, try some exercise, walking or whatever you like to do. Protein is also something to increase to help. If you are already doing these things, that will help a lot besides resting in between. Good luck. I remember that fatigue well and will continue to hope the best for you.
Nan, hugs going out to you too.
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Thanks Mara. Just saw my MO. Rads fatigue is still a likely theory, but there are also some weird things happening with thyroid and numbers related to pituitary gland. I guess the pituitary gland can be impacted by rads too. She's running another test. If I'm not making progress by the end of the month I think she'll send me to an endocrinologist.
I'm trying really hard to walk a little every day. I know lack of activity can make it even worse. Watching my diet too. DH keeps hoping for that magic pill to turn it around. Think it's mainly patience!
Thank you!
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Kaption, patience is exactly right. I hope you get to turn a corner soon to feeling better. I remember thinking I would never recover but eventually it started. Good luck, keep us posted.
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Hi,
Sorry I have been absent. I have finally been sleeping more regularly through the night -- my sleep has been disrupted for years and finally its getting better.
I had my brain scan last week and everything is stable.
I have to run, my kids are totally crying at me -- they just heard that the 4th grade play was moved to be at the same time as the 1st grade summer birthdays and evidently having one parent at each event isn't enough. Oy. More later about my brain, I'm off to mommy now.
Ann
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agness....a great big happy hug on your scan...its so nice to hear some good news...!!!!!
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Wonderful to hear good news on your scan, Agness!
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Oh Agness you made our day!! Congrats!!! Such wonderful news!! Oy you right, how could they set up two things going on at the same time! It's a tough go. Good luck in solving this so difficult puzzle
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Thanks. It's been pretty weird when you know you really shouldn't still be here based on established standards.
Which brings me to more stuff about brain treatment fall out. We don't really talk about it much other than some memory issues but there's more to it than that. There's recovering from brain surgery, normal patterns of post-treatment weirdness, and nutritional support of the brain and body around and after treatment. Right? We know more than any researcher because we are living through it all. I'm going to make a post (or a few) over the next few days and maybe you will add your experiences too. I've got stuff to share -- but right now I'm going to the grocery store (doh!)
TTYLAnn
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Ann,
I will appreciate any tips you have. I've had extreme fatigue since rads ended the end of March. I have one lesion over my right eye. We are not sure if it's in the lining, fluid, or what. But, I am certainly down.
MO has run several extra blood tests to see if I'm anemic or having adrenal issues from pituitary gland impacted by rads. All so new and confusing to me.
Thanks!
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i would love to see more experences and tips...I never treated my gamma knife like an actual surgery...the day after the first one, I drove myself to chemo (hour drive)...I got in big trouble for that one and they made me call my husband...looking back, they really were more like surgery than radation, I was so tired (bone tired) for at least 6 weeks, i think close to 12 weeks for the first time cuz they did 5 pretty big ones so it took most of the day in that stupid halo, even ate lunch with that on (ouch!!)....still looking for more info since they really did cut into my skull this time...i still need all my reports on that so i hope to update by friday....im very worried about my brain, trying to get hidden parts working...stayed outside on this beautiful spring day and planted some seeds, also i painted and took some photos for a few hours...so nice to just be outside....you are all in my prayers for a peaceful painfree night....such a loving group of souls i happened to come across, its so odd that i feel so connected....i dont even do facebook but here i am with a group i dont know, and i care very deeply...this is such a wonderful thing, nothing on the outside matters a bit....keep shining bright!!!!
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Agness wonderful news on your scan. Your insight is also valued.
I finished WBR almost 8 months ago. It took me at least two months to shake the fatigue. Another 4 months to be fully active and full appetite. Today, I feel better than I have for two years, going to the gym and exercising most days. The exercise and return of my appetite have helped most in my recovery. Short term memory issues happen less often than before. I do not feel impaired in any way. Though my treatment course of surgery and WBR was rough, I am glad I did it today.
I hope everyone recovering will get on the upswing sooner and I do wish you all well.
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Back now
Let's talk about treatment options for the brain. We are stymied, as are patients with other central nervous system (CNS) diseases by what is called the blood-brain barrier, aka the BBB. I only know about penetration of Herceptin into the cerebrospinal fluid (CSF) but only about 3% of it might possibly get into that area for measurement. With a brain tumor, craniotomy, and brain rads it gets up to maybe 15% or so, perhaps higher, but it still isn't awesome. During brain rads itself the BBB is probably the most porous as the body is going through that trauma, but it still isn't 100%. Why? The BBB is there to help protect our brain, spinal chord and spinal fluid from infectious agents, probably from larger offending proteins from the environment, including certain foods, as well. That's the challenge in treating us, most chemo agents just can get in there in any appreciable amount to poison or cause the cancer to die.
There are a few chemo agents that can get through the BBB, mostly platinum-based chemos such as carboplatin or cisplatin, but the heavy lifter for HER2 and ER+ breast cancer, the family of taxanes (docetaxol/taxotere, or taxol) just can't.
Here are some cool pics of the Virchow-Robin space, its basically the BBB itself (its in the top image, in the center-top);
http://visnu528.blogspot.com/2014/09/glymphatics-a...Surgery is an option sometimes, but they try not to do it unless it is a large mass and better if it isn't near sensitive areas. Neurosurgeons can't get clean margins when they work, they just try to get most of it out of there and then use rads for cleanup. Depending on where the tumor is located can really affect what they are able to do and how much trauma it will cause.
This is why rads is the first choice of treatment options for disease that has gotten into the brain most of the time; rads can get in there and treat lesions without having to cause trauma from surgery, with acceptable tolerances (the body can heal, even if rads causes some damage). It also can help try to sanitize the area and hopefully kill off any residual cells, this is why SRS to the tumor bed is common around here for those who have had craniotomies. (More about rads later)
How the heck did the cancer get in my head anyway?
It's not like our doctors really talk to us about this stuff, mine didn't and I've been at this brain mets thing since the end of July 2015.
They believe that cancer spreads into the brain through the lungs, using the bloodstream as the conduit. The discovery about the lymphatic system connecting into the brain that they published a couple years ago -- it doesn't count yet. It is really like the brain lymphatic system doesn't exist because for the past century they believed that there was no such thing and so there isn't a body of research to refer to and they weren't trained about it at all. Not at all.
I had all the scans when I was first diagnosed -- PET, chest MRI with contrast, bone scan -- it was pretty comprehensive. They saw my 5-cm tumor in the lower-outer quandrant of my left breast, that all of my axillary lymph nodes basically lit up (like a Christmas tree I like to say) and one lymph node behind my breast bone. They thought I was metastatic but found nothing outside of the area, so they put it down as Stage 3B. I had a complete response to chemo so it looks like my cancer had seeded into my brain before treatment, probably when it was too small to see. I don't have lung mets, never did. The cancer was dissolved with neoadjuvant TCHP. Might have it gone through my lymphatic system? I think it is possible, but I asked and they don't know.
Did you know that there have to be at least 109 cells massed in order for an MRI with gadolinium contrast to pick it up? If there are 107 cells massed then nothing will show up on the MRI. Not very encouraging but it is the best imaging available for looking at the brain -- at least we should know its limitations....
To be continued, I need a break
Ann0
