Brain Mets Sisters
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Hi freakzilla,
I was told it was golf ball sized. I had a craniotomy and gamma knife. I'm now taking Tykeeb and Herceptin . Which seems to be working ok right now. No new progression and the primary tumor has decreased.
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I'm 45 with a 5 and a 9 year old; single large cerebellar tumor almost killed me last summer as I was misdiagnosed.
Did you have any nodal involvement? Also, due to the dynamics of the posterior fossa (cavity that houses the cerebellum) there is roughly 40% chance that it will start to grow on the outside of your brain. This happened to me so I'm getting IT Herceptin into a port in my skull now and I had four weeks of partial brain radiation earlier this year.
How frequently are your scans? Definitely read the radiologist's report/s from your scans.
Did your original BC respond well to treatment, do you know? Are you NED from the neck down?
Have you ever had a lumbar puncture done? This can look for CTCs and also other markers of disease in the meninges.
We are here for you. We are all doing our best to try to push the limits of medicine as brain mets seems a bit of an outlier.
Hugs.
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I'm feeling a bit better today after craniosacral massage and acupuncture. It felt like it totally helped cool down the inflammation rather remarkable. I'm still not perfect but not in wincing pain thankfully. Both practitioners felt it was due to my liver being overtaxed by my recent rads treatment, clearing out cellular debris and detoxing. Lots more fats, leafy greens and vitamin A. Still doing Dex for a few more days until things feel quieter.
Ann
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hi agness, wow I have a lot to learn about this.
So far it looks like me scams are every 90 days.
I will be meeting with my surgeon soon and will take a list of questions. I feel so in the dark about everything.
I don't think there was modular involvement.
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Hi Jennifer,
Take a deep breath. The good news is that you have had surgery and GammaKnife to the surgical bed. Your scans show your tumor is decreasing in size and there's no new progression in the brain. These are all positives! Your treatment is working.
As a stage IV patient you can expect lots of scans going forth...from whole body PET/CT to lots and lots of brain MRIs. These scans cause anxiety, but I always feel better knowing what is going on with my body.
Agness gave you a great start on questions to ask your oncologist and your surgeon as you go forward. You can also look up lots of additional info right here on breastcancer.org. I believe knowledge is power and thus try to arm myself with as much knowledge about my cancer as possible. Knowing a little bit about what docs are talking about at my appointments also makes them feel less overwhelming. If you have time, read back thru this thread. Lots and lots of women have contributed their stories to it. I found that extremely helpful when I was first diagnosed with a brain met last year.
We all have stressful days and plain out bad days. That's ok. If you feel your moods are way past a bad day, don't hesistate to ask your doctor for an anti-depressant. You can get thru this!
Carrie
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Jennifer - check this out, with higher dose Tykerb (lapatinib) this gal with HER2 LM killed off the cells
http://www.her2support.org/vbulletin/showthread.ph...
I've also posted a bunch about HER2 brain mets on the HER2Support.org site, some of which might be on the second page. Lots of links, some of which I've also cross posted here.
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Gamma Knife booked in privately for 12th May, can't wait any longer.
Then we go to war with the NHS!
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Hi everyone, I am newbie to this thread. I actually do the legwork for my sweet daughter. She is 31 with MBC for awhile already. i will try to make this short. She has been on just about all tx already.!! Last year after very aggressive progression and after much nagging the Onco, she finally had a re;biopsy from the original DX, and voila, it showed that HER2 status changed from HER2- to HER2+ fish +++ . Biopsy sent to F1, and of course it showed she SHOULD be good for all the good stuff afforded to HER2+ (but it failed her, Herceptin/Perjeta/ TDM1 all for naught). Original DX: ER+PR+HER2- changed to ER+PR+HER2+
She has extensive bone mets, all throughout her skeleton including more than 20 lesions to the skull. She had GammaKnife done last year, for some lesions really pushing into the Dura, (it got a bit smaller). The last few days she has had numbing and tingling on partial side of face, she had a facial MRI but it did not show any nerves being pressed so we are on wait and see.
Changed Onco, this year he put her on Ibrance/Letrozole for 3 cycles, just did scans 2 wks ago, crazy report, it read like a comic book, some stability, some clearing of some lesions that have been there for a long awhile, and some NEW lesions!. So after much back and forth, he decided he will put her back on Herceptin/Perjeta with Ibrance/Letrozole. At first I could not understand altogether about IBR/Letr with someone with Her2+ , but I've come to learn from the wonderful ladies in a different thread here, that there are many Pathways to Her2 and they are targeting IT with different target therapies.
Well, Perjeta for unknown reason to us, was rejected by Insurance. Herceptin was confirmed. So now Onco prescribed Herceptin and TYKERB for her to take along with Ibrance/Letrozole.
So ladies, could I ask you about this mixture? What say you? At least about the Herceptin/Tykerb. We would love to hear what your experience with these are. Also, What strength are you taking TYKERB, all 1000 a day?
Thanks so much for any info you guys could offer
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Hi MomalltheTime. I can't really help here since I am on Gemzar, Carbo, and Herceptin, but I just wanted to wish her (and you) the best of luck on the new drug. Hopefully it will be the right one to kick everything back!
Also, I am about the same age as your daughter (I'll be turning 35 in two weeks). If she ever wants someone to talk to in the same boat, please do not hesitate to reach out to me. My mother has been there every step of the way with me too, and I know the majority of the time, it is harder on her to watch me go through it, than on me.
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Hey Becs thanks sweetie. I'll be perfectly honest she does not like to talk about it AT ALL!!!
I have learned different strokes for different folks. I like to look into all I can in the subject, and it has helped me a lot. Particularly this site. But she is the type that for her to go on with her life, she just can't make it central to her. Although we ALL know it's impossible.
Becs what about Tykerb, you were never suggested that?
I am trying to find a thread with Tykerb and Herceptin
I'll come back to check on you, thanks for answering.
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good luck Freakzilla. What a trooper though I know sometimes we have no choices.
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Hello Jennifer404, this is directly from Debra, my wife.
My heart goes out to you, and I can relate. My cancer metastasized to my bones and now to my brain. My condition is terminal, but no one, not even my oncologist, can predict how much longer I have, a day, week a year? My only daughter is grown and on her own, which makes my situation easier than yours.
You have two children that need their mother as whole and supportive as possible. My cancer was first diagnosed in 2007. Since then I returned to college in a 3 year program and got my masters degree as a marriage and family therapist. I've worked as a clinician for just over 6 years now, and never dreamed my cancer would return with such a vengeance. I had a brain seizure. I was shocked and angry, just like you. I have found, Jennifer, that the most important and, quite honestly, the only thing that has gotten me through these challenges has been my attitude. Yes, there are times I wake in the morning and just don't want to face the world. So I get myself out of bed and force myself to go about my day, living in the present, letting go of the past and of the unfairness of life. The only person I have control over is myself: my attitude, choices, actions and words, and I want my last time in this world to be joyful, productive and full of compassion and kindness for others...a home run! I'm still working almost full time as a therapist. This, along with a very supportive husband and friends, have been my salvation. Reach out to people, Jennifer. Human contact is so important to our mental health in going through such a difficult time, both physically and mentally. You need the support and love of others.
You render strength to you children, and they will always remember their loving, positive and nurturing mother.
Again, my heart and thoughts are with you.
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Just got back my CSF analysis from this afternoon - clear, colorless, no elevated red or white blood cells. High glucose and very low protein. No signs of carcinatomatous meningitis (aka LM).
My neuro-onc gave me a thorough neuro exam and other than a stiff neck and weak right hamstring (why I saw the physical therapist last week) my reflexes were all spot on. Since the dexamethasone helped a little but that I still had pain and discomfort pointed to musculoskeletal issues rather than central nervous system edema and brain swelling. Given the dramatic retreat of disease over the past months shown on my last brain scan she thought it would be unusual to have more spread now, but then, it is cancer which we know can be unpredictable.
On Monday I'll get my brain scan done and Tuesday morning I'll review the imaging with my neuro-onc. She offered to call Monday night but I told her to wait until we could go over it and hopefully my partner can be there too.
Phew but darn it all I wish I was feeling 100%. Soon enough.
Much love,
Ann
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All good news Ann.
Everything crossed for the MRI on Monday.
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Thanks
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Ann- That's great! Hopefully it will put your mind at ease before your scans.
Happy and healthy weekend to all.
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Ann fingers crossed.
Debra that was such a nice warm thought that you put down on paper, you have so much to be proud of. And an excellent partner.
Jennifer warm hugs, Carrie gave you good advice.
Becs fancy picture, very cute.
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thank you all so much, I feel much more positive after hearing from you all. I am meeting with my oncologist today as well as getting Herceptin and will let you all know how it goes.
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Hi survivors,
I have 10 WBR hippocampus sparing treatments scheduled. I have completed 5 and was wondering if others with 10 treatments lost their hair and if so what day?
I am preparing to tell my students and co-workers, but don't want to give inaccurate information if I am not going to lose my hair.
My doctor has suggested miaderm $30.00) or strong green tea as a healing agent. Does anyone have any suggestions on this?
Thanks to all for your good information and sharing your positive stories about WBR.
kk
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hi Kk - I've done two rounds of brain rads since September and neither was the one-day gig. With 5-days of LINAC SRS and with 20 fractions Tomotherapy partial brain rads to the posterior fossa (low back of skull) I lost most of the hair around the two week mark. The exception was the regrowth over the SRS-induced patch took an extra week to fall out.
After SRS my hair started filling in about two months later.
It is now pushing 3 months since partial brain rads stopped and around the edges of the treated area there is a thin strip of regrowth starting but the main area is still bald. I was reading about it and it sounds like it can just take some time. My docs all said it will grow back. Hopefully though I am at least fortunate that the rest of my hair covers my baldness.
Are you also going to take that Alzheimers drug that is supposed to help protect the brain from WBR - namenda/memantine?
Memantine Protects Cognitive Function After Whole Brain Irradiation
http://www.oncologypractice.com/specialty-focus/cn...
Big hugs. You can do this.
Ann
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Agnes Saw in the thread that you are doing the IT herseptian How are you getting it paid for ???? Have a doc willing to do it but is worried about payment. Not sure what my next move is susan
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My doctor and I did discuss that Alzheimer's medication. Did you start taking it? I am already feeling a little foggy, but it could be the stress, disappointment or sadness of moving on to the next thing. I am working full time to stay on a pattern, but do come home and take a nap after RAD and school.
Do you feel cognitively changed? I am not sure what to do for the next school year. I want to get over this hurdle.
Thank you.
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I had my posterior fossa irradiated, that's the cavity below the tentorium in the back of the skull where the cerebellum and brain stem are housed. They did a margin out to the back of the occipital lobe and down to C2 -- to catch any inobservable spread of LM as well as to establish a reproducible field should more brain rads be needed in the future. Though I was offered and suggested WBR many, many times as standard of care, my spinal fluid tested clear and the progression was limited to the cerebellum. The LM progression appears to have been set in play when my cerebellar tumor was resected last July.
I started researching a ton last summer in the hospital when I realized what happened -- brain as the first site of mets. Even though my team hesitated and was veering towards standard of care I realized that their end game wasn't eradicating this cell line which wasn't my aim. I spent months researching about therapeutic outcomes, treatment alternatives -- and having my case mishandled by even research institutions.
Finally they were willing to acknowledge leptomeningeal enhancement after three months. There was no plan so when my atypical facial nerve pain and stiff neck became persistent I just called them and said I was going to the ER. I had the surgery to place the Ommaya port the next day. I chided the surgeon for not being willing to see that I had LM, in spite of the radiology report from my scans.
In talking to many docs practicing in this area of oncology related to the brain and HER2 I heard over and over that there has to be diagnosed LM for them to start treatment. It is possible that IT Herceptin might not reach deeper brain mets, there is some evidence of that, but evidently in patients with LM deeper brain mets did also resolve. I know that just IT Herceptin at the late stage it was introduced for me wasn't enough and so we added partial brain rads too. I was "fortunate" that my brain was the first site of mets (not very mutated, protected in a sanctuary site), that my cancer cell line was deeply mutated (more easily seen as other by the body), and that my HER2 tended to glom a bit and grow a little slowly; it also responded to anti-HER2 drugs (Herceptin and Perjeta) during neoadjuvant chemo. Insurance has always paid for the IT Herceptin, it's just an off-label use.
Sooo anyway, today I got the results from my second post partial brain rads brain MRI. Still a bit of flair but my neuro-onc believes, based on a comparison of different images that the signal represents treatment affect -- brain damage, healing scar tissue, rads-induced inflammation. She was really pleased. As my dad pointed out, for months last year things were going in the wrong direction. With HER2 cells being so aggressive the fact that there is stability means a lot; it is much more likely to grow quickly. No new areas of enhancement anywhere
But, guess what? I also have a raging infection in a weird sinus behind the nose called the sphenoid sinus. It isn't a common place to get a sinus infection, probably the worse place to have a sinus infection as it can affect your sight and there are some major blood vessels by there. Ack! Usually it takes months to get diagnosed but it was blaring on my brain MRI. I started on antibiotics today and next week I'll see an ENT to make sure it is resolving. I think it was brought on in the wake of the flu I had a few weeks ago and it was contributing to pain somewhat over the past two weeks.
So I've got a new health issue but it is treatable and curable. Oh the irony.
Ann
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Haven't been here very often lately but I think I'm all caught up. Been busy!
Debra, Thanks so much for what you wrote to inspire the newly diagnosed. We adore your husband but it's great to hear from you directly too.
Got my scan results a couple of weeks ago and all is stable! Nothing in my brain, bones, or eye (previous sites of metastasis). The only active tumor left is in my lung. I saw a RO lung specialist last week and will do 5 days of Cyberknife to that tumor. It's not very active (SUV 1.7) and has shrunk quite a bit (originally 4cm, now 2.8x1.2cm) but they wanted to zap it to be extra cautious. My bone met completely went away after I had it Cyberknifed last year so I'm hopeful this will work.
For you newbies with brain mets, I originally had 12+ brain tumors, the largest 2cms. Had 20 days of WBR and they did my eye tumor at the same time. Totally cleared out all of my brain tumors and my eye tumor and I've stayed clear so far for two years. May 23rd will be exactly two years since my last WBR treatment. Was able to remain active as a dancer and yoga practitioner the whole time. Never had to take steroids since I was always brain mets symptom free. The only mental impairment I notice is some degradation of my short-term memory but that could also be the chemo and aging. My higher mental functions seem unchanged as well as my personality. I did lose my hair (actually loved being bald!) and 30 pounds (a surprise bonus since I was 20-30 pounds overweight) and felt very fatigued a month after radiation treatments ended. I posted some of the Chinese medicine treatments I used while going through WBR. I think it really helped. If you can't find the posts, PM me and I'll send them to you. I also have amazing Oncologists if you are in the Bay Area or want a second opinion. My RO, Penny Sneed, specializes in radiation for BC Brain Mets. My MO, Hope Rugo, is one of the top BC Oncologists in the country. Overall, I highly recommend UCSF for BC care.
Once you get your treatment plan in place, you will feel much better. We're here to support and help you through this!
Hugs, Susan
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Thank you Agness. You have so much great information on these boards! I'll look up LM Spread and off-label IT Herceptin unless you have that info readily available to share. Thank you so much for your input. She is done with WBRT (a week as of tomorrow) but still can barely walk, eat, eyes are crusted shut, etc.
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Susan- Nice to hear from you and so glad to hear your great news! Wishing you luck with the lung specialist!
Has anybody been on a drug called Onfi? My neurologist wants me to start taking it in addition to my keppra. I have constant spasms around my left hip area, and after feeling the region, he believes they are truncal seizures and thinks that adding in this new drug might help control them. He said it works similar to Valium. I haven't been able to start it yet because it requires pre-approval from insurance due to it being a controlled substance.
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Hi, I'm new here. I was diagnosed with dcis back in 2007 and stage 2 BC last spring. Sorry that I know this forum is for stage IV. But I'm having this headache for more than 3 weeks. It's on and off for many times during a day with the throbbing pain mainly on my left side of the head. It always starts from one spot at the back, sometimes it radiates to front of my head. Bendover will make it worse. No other symptoms. I'm so afraid that I'm gonna have brain mets. What was the first symptom you had when you first found out the brain mets? Thanks!! And sorry to bother...0 -
Hi Elaine, welcome to the BC.org discussion boards! We're sorry you're having this symptom lately and we understand you're worried, but you're right that this forums is for those diagnosed with stage IV breast cancer. However, there is a thread for those who are not stage IV but have concerns or questions regarding stage IV. We encourage you to post your question there also. Here is the thread:
If you are NOT stage IV but have questions please post here
Hope this helps!
The Mods
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Hi Sisters....
Until September 2015, I was stage 3C, invasive ductal carcinoma,,,,then in October I was diagnosed with a tumor located in my occipital lobe the size of a die. I had gamma knife to treat it, and on my scan 3 months later, the tumor had shrunk a little. My next scan the end of March showed that my tumor has increased from 2.2 x 2.0 cm to 3.3 x 2.4 cm. My neurosurgeon recommend to wait 6 weeks to see if my tumor increased in size again, he said if not, then he recommends to wait another 6 weeks. And if the tumor increased he said he would operate. After that appointment I was very worried, I started having more visual symptoms, and this waiting was driving me crazy... so....
I decided to get a second opinion, and had another MRI. The new neurosurgeon I seen said he would not have treated my tumor with gamma knife, he would have removed the tumor surgically because my tumor was easy to get to, and it was a nice round tumor before the gamma knife. Now my tumor is irregular, there is damage to the surrounding tissue with edema. This doctor also said without me asking, that I will not go blind, which It was really weird that he said that, because I've been worried about that for the last month.
He also said I shouldn't be driving, something my other doctor didn't bother to mention.So, I decided to have my surgery with my second opinion doctor, and its scheduled for this Thursday, and I am getting very nervous. He said I should have the tumor removed this month, but I'm thinking about rescheduling.... I have never had brain surgery before, this is scary!!! Just wondering what to expect, and if anyone else has had gamma knife first, and then surgery for the same tumor?? I don't know if it is worth it to get a third opinion.... My tumor has not increased since the scan the end of March. And I was wondering if the tumor cells can spill during surgery and spread?? Thanks for reading!!!
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Hi Tina,
First off, are either of your neuros part of a NCI center? If not, I would strongly suggest consulting at one ASAP even if you have to travel.
Secondly, what is your diagnosis, i.e. Her2+, TN, etc?
Thirdly, I had surgery to two similiarly sized tumors a few months ago, including an occipital tumor. I read this article in preparation: http://head-nurse.blogspot.com/2008/11/what-to-exp...It turned out to be really accurate. Standard is SRS after surgery but I am opting to treat with chemo as part of a clinical trial instead. I get scans every 4-6 weeks and if and when there is regrowth, we will stop the trial and do radiation
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Hi!!!
Yes, my first neuro is at a NCI center. My second opinion neuro is at the Cancer Centers of America.
Iam her2+ by 2% .
Did you have gamma knife?
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