Brain Mets Sisters
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I am on treatment 8 of 15 wbr treatments. I am doing hippocampal sparing, so that should be an option.
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Mara, I did GammaKnife about a month after my craniotomy. My neurosurgeon wanted the incision to be nearly healed before introducing radiation. Good luck to you!
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Thanks water lady. Thanks Goodie for the great info and questions to ask.
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HI All. It's been a few days since anybody posted so I just wanted to check in to see how everybody is doing. Hopefully no posts = good news!
I have my follow-up MRI tomorrow night to see if the steroids have been helping to reduce the necrosis. I then am meeting with my oncologist on Monday to discuss Avastin vs Tykerb (both with or without Xeloda, which I just started in June). I think the 'roids are doing their job as I haven't felt any symptoms. I just hope now they can see the lesions clearer without all of the swelling and am keeping everything crossed that they haven't increased in size.
I also had an endoscopy bright and early this morning because my pet-scan in June showed some thickening in my esophagus. Nobody was too concerned, but with Stage 4 you still have to check everything...The doctor thinks it is just a haital hernia (which runs in my family) or bacterial and nothing too serious. He did do a biopsy to test just in case, but really isn't expecting anything bad. I should have the final results in a few days.
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Becs, I was actually wondering about something with you. Since we had similar symptoms, was one of your tumors located in the parietal lobe?
Looking at all my scans from the past seven months and judging by symptoms, that parietal area seems to be the nastiest and most aggressive of the three tumors I've had. The occipital tumor didn't regrow, the MRI found areas of enhancement before I began rads but that was sub-mm stuff. Also, my only symptoms there ever were three incidences of minor visual disturbances back before my diagnosis in January. The left side tumor shrank a mm on Abemaciclib and regrew a mm once my dosage was lowered, so it stayed stableish. Plus, I've never had any symptoms there. But the parietal tumor has given me by far the most symptoms and regrew fast when I had to drop my Abemaciclib dosage.
Really I'm just pondering but wondering what this means going forward. So far, I suspect I'll be on Keppra for life (or until they find a damn cure) and I've seriously curtailed my driving...
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waiting for my brain MRI. I'm hoping my drug regimen is working
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Good luck leftfootforward. we really should get together, seeing as we are both in Seattle and have a lot in common
Giovanni - no problem, I hope it is helpful for you.
Bad - interesting observation. I have wanted to chart this disease for some time. Would folks maybe like to help me do that? We will look at presentation patterns, possible pathways for spread to the brain, responses to different treatments, original tumor type, etc.
Ann
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Becs, I hope the MRI goes well & your endoscopy results are good. I hope you get good results too leftff..
I'm not allowed to drive anymore Badat, which is a pain because I love my car & driving & being independent!
I had a long appt with my oncologist last night....I'm going to be having a brain & spinal MRI this week & a lumber puncture to hopefully get enough csf to check on my receptors. I was originally highly ER/PR + but had a pleural effusion that was ER/PR-, so we need to know where I'm at now. Then we can choose a treatment to suit hopefully. Unfortunately here in NZ we don't have the same number of drugs available as you do in the US, and far fewer trials
He seemed to think if we did nothing I wouldn't make 2 months, so I really hope we can come up with a good regimen. (They don't do intrathecal chemo here). My kids & hubby are my priority- I want to be here for them for a lot longer yet.
****Here's to long lasting successful treatments for us all****
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I agree kt, I want us all to go forever.
Becs, fingers crossed at my end as well about no increase in size. Glad that you are not feeling symptoms. I agree about checking everything Stage IV.
Bad, I am with you on a damn cure. Hoping all these drugs they are looking at for HER2+ will at least slow our progression so we can be cured or at least on maintenance the rest of our lives.
Leftfooforward, I am also pulling for a clear MRI for you as well. Good luck.
Funny, I have not had mine biopsied yet anyway, I keep assuming it is from the breast as well even though, it will not be biopsied til craniotomy. Wouldn't that be another kick in the pants if it was not same as the breast. Oh well, trying to keep myself on the step I am at.
I did have an app't with my MO and so far I appear to be NED below the head. Will have a bone scan to confirm but nothing showing anywhere else according to CT which didn't hugely surpise me. Honestly, I have been scaring myself that it was another cancer in the brain, I just need to shut up and wait. Surprised they did not do a core biopsy when was in but oh well. Dex is keeping symptoms under control and did get a Herceptin in 17/18 of the original since it would not interfere with surgery. Glad to have it too. I was getting nervous not having anything in.
Where I am, if there is nothing other than the brain left, apparently they will consider me a success below the head and just treat the brain. I did ask though if I will get scans but apparently that info will come up after bone scan. MO thinks I was one of the rare ones that had it in the brain from the start but of course cannot commit til a biopsy done on the tumour.
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hey Bad-
Are you on Kepra because you had a seizure or bc they were concerned you would have one...I haven't had a seizure but they are concerned I could have one based on tumor locations. Makes me nervous and feel like a bit of a ticking time bomb. Not on Kepra.
Also I had my first blood work done since starting Abemaciclib. It's only been 3 weeks and WBC has dropped to2.2. Meh.
How often did you have your blood work checked while taking Abemaciclib? Next Brain MRI scheduled for 8/22. Praying the little jerks havent grown.
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brain is clear. Thanks for the well wishes
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Wonderful leftfootforward!
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Love hearing that news leftfootforward!
Well that sucks Elizabeth! Abemaciclib was a fairly difficult drug for me but I SO had my fingers crossed it would be easier for you. When I was on it, the trial required I get bloodwork, see the onc and pick up my new pills every 3 weeks
As far as seizures, I've had simple partial ones. They've presented as tingling and twitching in left arm and side. My big tumors have been right side but hey fun fact, right brain controls left side of the body and vice verse. I self-diagnosed myself after spending some time hoping real hard that my symptoms were brought on by lymphedema/radiation damage. So I'm a weird situation because I was never diagnosed with seizures by a doctor but we all know I was having them. I don't remember when exactly I started Keppra, whether it was immediately after rediagnosis or a few weeks down the line. But it was quickly.
Driving is also a gray area for me, partly because of the whole self-diagnosed seizure thing and partly because regulation seems a lot less strict in the US vs Europe/Australia/NZ. I've never been contacted by the DMV or told to give up my DL. But my doctors don't think I should drive and I agree with them. I admit I very occasionally drive a few miles in the city when the buses aren't running and the weather's too bad to ride my bike. But I wouldn't for example do freeways again for a very long time, if ever....
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Yeah leftfootforward!
-----I had another craniosacral massage session yesterday evening. She was totally digging around in my neck and base of my skull but it ultimately helped release a lot of trapped inpingement. I had to have rads down to C2 because they were worried about LM they couldn't see. Unfortunately for me it was probably not necessary and it is affecting my ability to do dance right now and it kinda fucked with my neck. It was a relief to have someone who knows how to get in there and really get things to release. Ahhhh! She is optimistic that we can get the body to go in the right direction. She helped me out in 2015 with my irradiated chest wall and my healing has been amazing, that is why I wanted her to help me with keeping my tissues open and fluids moving when I had to do partial brain rads -- she's trained in craniosacral massage and lymphatic massage. I tell ya it helps a lot. Anyone else try out craniosacral in conjunction with their brain mets?
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I have also been banned from driving on account of seizures. Both my doctors told me and it is New York state law that you are not allowed to drive for at least one year after being diagnosed has having one. Fortunately I live in Manhattan and never really drove anyway, so it really has had no impact on my life. Although, if I lived anywhere else, I could see it being a significant issue.
For me, the seizures is what led to finding the brain mets, so I was put on Keppra literally as soon as I was admitted to the hospital. Right now I am on 1500mg twice a day, along with 10mg of Onfi in the morning and 15mg at night. It seems to be controlling everything, plus 4mg a day of steriods.
BAU- To answer your earlier question. The biggest lesion (which is the one that was/is also showing the most necrosis) is right in the center of my cerebellum. The docs were shocked that I was so high functioning (going to work, remembering everything, etc) despite this lesion. The Chief Neurologist at Sloan Kettering told me it was a sign of "supreme intelligence" that my brain found ways to work around it and show no symptoms of it ever being there. It is, to this day, the single best compliment anybody has ever given me. I asked for her to write it down for me to give to my company during annual reviews...
My other lesions were located in right parietal lobe (this is the one that prob caused my left-sided seizures), left frontal cingulate gyrus, left superior occipital lobe, right frontal lobe, right parietal occipital, and right temporal lobe/opercular
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Becs - that sucks about the driving and seizure stuff.
Based on the fact that I and another patient I met online both had 5cm cerebellar tumors before we had significant symptoms I think in the posterior fossa region that cancer in certain positions can grow quite large before it affects functioning. I've been told I have a high tolerance for cerebellar involvement as well over the past year which rather confirms my belief that docs are pretty simplistic in their understanding of impacts to the cerebellum from metastatic lesions.
Cerebellar lesions happen about 12% of the time with breast cancer and 75% of the time it happens with HER2 disease -- but even then if you are HER2+ if you get mets then it's still only a 40-50% chance of it going to the brain. HER2 disease only happens 20% of the time, broken down into half HR- and half triple positive -- I'm thinking brain progression is more likely as the first site of mets for HER2+/HR- as well. It just ends up being a very small number of us patients overall, neuro oncs seem to have had the most exposure to this type of progression and even then it is in very small numbers of patients. I just don't think they know very much at all.
That is why I would like for us to map it out a little more here, to see what the patterns are. Freakzilla's partner, my friend, and I all had large, singular, cerebellar tumors that were HER2+/HR-. I know some other HER2 brain mets patients who had miliary spread, tiny dots of BC throughout the vasculature of the brain. We have seen some with individual or multiple lesions in the cerebral cortex. I want to understand likely progression paths depending on how the disease started, its type and also what treatments worked in each case. I am not seeing that level of granularity reflected in the literature yet and yet I don't think it would be hard to assemble and analyze.
Ann
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PS - Becs, not ruling out that you might have high intelligence
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Agness- interesting idea with trying to map it out. I have to say though all the stats you bring up really make me grumpy! Ha! Its amazing that I always win the small odds/crappy lottery- breast cancer under 40, mets in less than two years and despite being ER+/PR+ it still went straight to my brain!
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Agness- I am Her2+, ER/PR. -
My two tumors were in the right frontal lobe.
I had gamma knife treatment to the tumors in 12/12, two years after original diagnosis and 6 months after finishing original chemo plan .
I was placed on Xeloda and tykerb. It should be noted that my liver was full of tumors when brain mets were found. Liver tumors discovered first in Us then they scanned my head and found brain tumors that week.
I was mostly asymptomatic for both conditions. In hind site, I had trouble multitasking and had some short term memory issues. They got better after gamma knife. I could make lists again and plan things.
Monitoring of tumor beds showed changes so had craniotomy in February 2015 to check for cancer. It was just scar tissue.
Removed from tykerb after a solitary liver tumor discovered in July 2015 after 2.5 years. Placed on herceptin in its place.
Removed from herceptin after 9 months due to heart issues. (March 2016$
Currently only on Xelodala.
Last scans were clean.
Hope this helps
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I have been following your experiences. Truly a brave people you are. Mar sorry you had to join, but it's a fantastic group of friends here.
Still watching to see if the systemic treatment Danni started on now, will help with the particular larger lesion that keeps growing, a left frontal lobe with heterogeneous superficial soft tissue component in the scalp. There are new enlarging dural based mets. Asymetric dural thickening and enhancement of the front parietal and well as dural nodularity along the left anterior temporal lobe convexity. leison of the left sphenoid bone which extentds into the left orbital. A bunch of others in the mandibular, C2,C2, clivus etc.. More than 20 in the skull , but most worrisome is the first one I mentioned.
Will all of your experience, so reading this, it's still safe to say it's not reaching the brain? the Dura business... The Radio Onco is very competent, she was great at the visit, but I know she felt bad for Dani, at first she would do rads but then she told Dani she does not think hair would grow back in that area, so Dani was very upset, so she said she would be willing to wait a total of 6 wks, that would be 2 tx of the new Navelbine and Herceptin tx, and then redo scans, and if it's not better, than off to rads kinda asap.
What say you?? I am soo anxious, obviously because it's such a game, that particular lesion grew 1cm in 4 wks! It's fast. Trying to keep it off the Brain. But what is Dura mets? Is that already worrisome? I wish they would take more time to explain.
She also had much progression on the liver, and of course the bones. It's a mess. She's still Triple positive. I asked for some type of biopsy, but doc says the tx would be the same, so there is no need to do invasive stuff now. Hope she is right!
Thank you everyone, and my prayers goes out to all of you, all of us.
TIA
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Leftfoot so Dani has similarities, her lesion is in the left frontal. She was on Tykerb Herceptin - they took her off, I asked so many times for Xeloda now that she has innumerable liver mets, they want to try the other tx she is on first. She was on Xeloda also, and doc said trial of Xeloda and Tykerb wont allow it if she was on these tx separate before already. She had Gamma knife last year to the same area, she said it was quite a harsh treatment. The screws, not easy.
Elizabete - Dani had it stacked against her from the get go. Almost 2 yrs after dx, mets to the bones, and to the skull, never NED since then. She was 25 at dx. Freaking unbeliavable. After new biopsy showed her status change to Triple Pos, none of the wonderful new drugs or tx, worked for her!!
Tumor beds? How can I find out more info of the details of where the other 20 or more lesions are? Like agness how you explained in detail where everything was, it's in the report? .
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Re: Driving Suspension - I wouldn't take for granted what doctors and authorities tell you, because most speak for hearsay, and do not actually know the law.
I did quite a bit of research on the subject, and I had a law professor friend of mine do a mini-research of law cases that confirmed my findings. Regulations vary state by state in the USA. One can find a synopsis for each state at this link https://www.epilepsy.com/driving-laws/
For instance in CT, my state, one cannot get a new drivers license or a license renewal, if that person had a seizure in the previous 3 months. However, the law doesn't say anything about a person who already holds a license, and who doesn't need to renew it. However, when I asked both neurologist and radiation oncologist, they believed that my wife was not supposed to drive, but couldn't mention the specific law. I inquired with the DMV (department of motor vehicles), and they said she couldn't drive, but when checking my wife's license they didn't find any notification of a seizure, warning or prohibition attached to her record. When I pressed the DMV for the specific law, they quoted a law the only mentions new licenses; when I pointed out the inconsistency between what they claimed and what the law said, they couldn't provide anything else. I combed the CT statute and couldn't find anything else prohibiting a person with a recent seizure to drive.
Similarly the NY state law talks about new licenses and not about existing licenses. I believe that most states mention that the commissioner of motor vehicles may suspend a license. However, that was not the case for my wife: when I contacted the DMV there was no mention of suspension. In CT there is no mandatory reporting for doctors to tell the state that a person had a seizure, and that's why there is nothing at all preventing from driving a person who had a seizure. It may be different in other states, but you may want to contact the DMV in your state and give them your license number to check.
Finally I contacted a friend who has an insurance agency, to see if there was any liability issue: there is none as long as the license has not been suspended.
I hope this helps.
P.S. I ended up driving my wife to work every day for three months because she didn't trust my fact finding; she was afraid of losing her license, if they stopped her and I had been wrong.
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Giovanni - you crack me up
mamaallthetime - that sounds so rough. The fact that your daughter developed breast cancer at such a young age and the fact that it has been treatment resistant does point towards it being a pretty tricky cancer to contend with. Was her BC ever sequenced? How is she feeling overall? Strong? Defeated? How are her faculties?
She was on Xeloda and it failed and the same with Tykerb but separately? I don't know that I agree that they are totally off the table. Still, with TNBC I think I would try immunotherapy or cisplatin -- probably the former. It would be off-label use of Keytruda or Opdivo but it should be available to her. You might need to find other oncologists to work with if they are stuck because obviously their line of thinking isn't working.
Keytruda Impresses in Triple-Negative Breast Cancer
http://www.medpagetoday.com/hematologyoncology/breastcancer/57727PD-1 Blocker Gets Few, but Durable, Breast Cancer Responses
http://www.medpagetoday.com/MeetingCoverage/SABCS/49052It is hard for us patients to understand but the field of immunotherapy has not been well supported for many years, it has been a complete outlier. A family friend in oncology since before chemo was developed told me that we have to be nice to those who have held this area of science up over the years because they really were thought to be studying nonsense. Oncologists have very limited understanding of how immunotherapy agents work at all, even something that has been on the market for years such as Herceptin. When we are dealing with brain mets they really don't get about the potential of immunotherapy agents to attack this disease, at even IT Herceptin is incredibly rare -- even as patients are living with this therapy.
My docs over the past year really haven't understood that I am NED from the neck down due to systemic Herceptin and Perjeta; I was really bad when my cancer was found and yet the drugs worked. The concept of applying the same drug (Herceptin) inside of the brain to take down breast cancer that entered that domain and escaped treatment -- they just struggle to get there.Oh, and one more thing, most of the articles I have found about pseudoprogression in the brain have been about lung cancer brain mets it seems, patient populations which were studied for these current immunotherapy therapies. I think its really something you should look into because it really is working against brain mets.
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Agness thank you for your caring. She is sharp as a tack. Independent. She fight tooth and nail to do things on her own. She gets up early for the kids, she does not want them to see her in bed. She will push herself no matter how tired to be available for the kids. And pain is something she manages, but does not talk about.
But she is not Triple Negative. She is ER+PR+Her2+ she was first diagnosed with Her2- so that status changed when they did a biopsy of the bone and sent it to Foundation One. And all the therapies that they said would work with her amplifications did not. If this treatment won't work, I will def push for Xeloda.
Agness what means BC sequencing? You mean like Foundation One?. And in her case when I mentioned Immunotherapy to the Onco she said it's not for her, And to even consider changing Oncologists, is really scary. She has already been to 2 different Cancer Centers that are part of the big Hospitals in NYC. And once you go to one doctor there, I have learned, the doors are pretty much close if you wanna go to a colleague of the doctor. It's worse than the Blue Wall. They even gave it a name when i had called originally, transfer of care. And a lot of docs do not accept it. Can you believe it??
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momallthetime - have any of her lesions responded to any of the therapies anywhere? I don't really believe in uniform switching of BC, I like it is just a furthering of the original line and trying to escape via available pathways. You can PM me her Foundatuon One mutations and Ill see if I can find anything in my notes -- I've been looking up random cellular mutations and have quite a stash of articles.
If they said no on the immunotherapy it might be because she doesn't have the pd-1 genetic mutation in her report.
If her cancer was trying to go HER2 then likely her zinc and iron regulation are off. Have you ever had nutritional testing done
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Agness- You are such a wealth of information for us all. I think I speak on behalf of everybody here when I say thank you for staying so up to date and sharing all of your analysis.
I wanted to kick the day/weekend off with some good news to share. I believe I mentioned that I had a endoscopy, internal ultrasound, and biopsy on Tuesday since my last pet-scan showed continued thickening around my esophagus. The biopsy results came back totally benign! Turns out, that is just the way my body is. They think it is a haital hernia, which runs in my family.
Also the initial read from my follow-up brain MRI on Wednesday showed a lot of good improvement over the one two weeks ago. The final report will be ready this morning, but my doctor's fellow took a look at it and called me last night to try and ease my mind a little. He said that the swelling around the necrosis has drastically decreased, along with the pressure in my brain. From his basic interpretation, the lesions all look stable (as in they have not increased in size). All in all, 6 months post SRS, that is good news! While I still am anxious for the final report, I overall feel much better and I feel good that I know for sure that right now I will not need any additional radiation. My hair is now all back and I can stop wearing my wig to work!
I am meeting with my oncologist on Monday evening to discuss my treatment plan going forward. I am on Herceptin and Xeloda right now (which 2 full cycles in have had no side effects on), so I am hoping to continue on that and just add in Tykerb and/or Avastin.
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Becs - you are most welcome. Cancer is such a big unknown for so many of us and brain mets, well we are in outlier territory, an area under-researched if ever there was.
Someone in my original chemo group was just diagnosed with a hiatal hernia this week as well. She also was diagnosed with a fatty liver and wondered if the two conditions were connected at all. In my cursory look I found other patient case studies with hypomagnesemia and hiatal hernia so I'm thinking there might be. Have you ever had your magnesium level looked at? Ever had any odd liver test results?
Magnesium is implicated in some breast cancers and also in the non-cancerous condition of non-alcoholic fatty liver disease and it is one of the minerals my naturopathic onc checks. It turns out as well that medications in general, but platinum-based chemo agents and also anti-HER2 drugs are all depleting of magnesium in the body.
An
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Hi all.
I'm glad you've had some good news, Becs.
I hope you & your daughter do soon too, Momatt. I agree, Agness, you are indeed a wealth of information
I had my spinal MRI & lumbar puncture yesterday (brain MRI next week now) and was immediately sent to the acute oncology dept of my hospital. I have a 15mm x 9 mm tumour on my spinal cord at T10-11 and oedema from T5 to the conus (bottom of spine).
I ended up having a CT to plan rads treatment, tattoos and my first radiation treatment all within 3 hours! Amazing how quickly they can get things moving.
Very scary tho. Every time I go to scans now I seem to end up in hospital with bad news
I'm not looking forward to the next one....I hope everyone else is going to get better news than me. I could use a break!
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Agness what is Nutritional testing? No she did not have it done. Also, re: the sequencing, yes, that's the test she just had redone with the genetic counselor. She literally called me this afternoon to tell me Dani has no p53 in her genes (because it showed up in the mutation in F1 or Guardant360 she had done, so they wanted to make sure it was not in the genes) and all the other genes that they tested for are negative. The counselor told me that there were even things she did not know about yet, they checked for. Palb1, Braca1/2 etc…I'll see when I get the full copy at the end of the week. So yeah, we should be happy, it does mean she told me that the little girls are not predisposed and neither are my other daughters. BUT it still lives a big gap, what happened to Dani was a fluke, and they have nothing to work with.
Re: F1, you would like to see the first page? I'll get it an prob take a pict and PM you, THANK YOU! And definitely gonna ask them to check for magnesium. They check for Potassium and Calcium but none of the others. Doctors in general, I feel, do not adhere to the fact that the whole body should be taken care of!!!. That's definitely part of the problem, I think.
Becs good for you. What do they recommend you do with this dx? Watch what you eat? So happy for you, that you have a plan. I keep seeing Xeloda, Xeloda for liver mets also, and Onco did not wanna go that route. Argh… And luck you that the Fellow took the time to call you and not torture you with "the not knowing". Good luck on Monday!
KT – first thanks. But so sorry for your new findings, and you did not have any pain? Lucky they found it. And also good that they acted on it, sometimes they have to get in touch with different depts.. and it's a never ending odyssey. Good for you.
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Ya wanna know why breast cancer metastasizes to the brain, especially as the first site of mets? Because when you have excess copper in your system your body puts it in the brain and liver. When your copper is up your zinc goes low, they inhibit each other -- HER2 and TNBC love copper-zinc dysregulation. And the brain is a sanctuary site and full of glucose, great for any cancers that are all about insulin dysregulation.
A group an UNC is evidently going to study it though
https://unclineberger.org/news/breast-cancer-brain...
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