HER2 Brain Mets Risk
With newer advancements in the care of HER2 affected women, more are living past issues with systemic disease and it is cause for celebration. It does bring to the forefront the risk of our mutation migrating, unchallenged, into the central nervous system where it can grow without challenge.
Targeted therapies are larger particles and most of the time they are unable to pass through the blood-brain barrier to do their good works against our excessive growth receptor mutations.
"Amongst 242 BC patients with brain metastases, 18 (7,4%) had cerebellar metastases. In that subgroup, Her2 over-expression was higher than expected (13/18;72,2%). Compared to all Her2 3+BC (73/242;30%) from our data base, cerebellar metastases were diagnosed in 17,8% (13/73), and only in 3% (5/169) of patients with Her2 negative BC. Majority (11/18; 61%), developed cerebellar metastases as a resectable, first metastatic site, and 73% (8/11) of these patients had Her2 3+ BC, treated with trastuzumab."
http://meetinglibrary.asco.org/content/125957-144
"On a positive note, metastasis of breast cancer to the brain is no longer a clinical diagnosis for which therapeutic options and clinical trials are lacking. Improvements in systemic therapies and CNS-directed local therapies have likely improved patient outcomes, even after the development of CNS recurrence, and particularly in the HER2-positive subtype"
http://www.cancernetwork.com/oncology-journal/upda...
Brain cancer, should our cancer progress, is a real risk -- but for HER2 patients it is a real thing and there are options that weren't there before that area still experimental such as intrathecal therapy to put the targeted therapies in through the blood-brain barrier.
About 20% of the time neurosurgeons will see cerebullar disease, aligning with breast cancer mets. The cerebellum is the back part of the brain, responsible for motor coordination, balance, movement. It isn't as critical an area who can be good treatment-wise and tumors in this area are easily excised via craniotomy. They tend to be single lesions when they show up in the cerebellum.
Removal of the bulk of disease quickly is important to delicate brain structures. Typical treatment follows up with 6 weeks of radiation to the tumor bed, causing local inflammation which Dexamethasone will help manage.
----
If this could develop in me, even thought I sought medical care along the way and everyone of them missed it, it could happen to you also. I want you to understand what and how it progressed in me that you can seek imaging sooner.
3 months ago I started feeling dizzy. I saw my GP after a couple weeks because I thought I thought I was having blood pressure issues post-chemo. He diagnosed a vestibular issue, perhaps from allergies.
A couple weeks later my right neck and shoulder started aching. I've never injured that area before do this was perplexing to me. Was it my reactivated whiplash from rads or my rerouted lymphatic flow that were causing the pain? Had no idea.
Two more weeks went by and I was in a lot of pain in my torso. I saw my RO and MO for post treatment follow-up after my mammogram and mentioned the pain and neither paid notice. I saw my GP the next day and he thought I developed costochondritis, swelling of the chest wall from rads, and a pinched nerve in my neck. He got me a script for Amitriptyline which would knock me out and make it hard to help my young kids in the morning.
I started having difficulty walking and was wearing a neck brace because holding my head neutral was important. My GP was on vacation when I emailed and his office dropped the ball. I got progressively worse over the next month with excruciating headaches that came out of nowhere. I started vomiting. I saw a different GP and he just gave me a script for Gabapentin. No one offered an MRI to figure out the cause. Stories I had read online of pinched nerves didn't get much worse like mine did, and they weren't constant.
I finally sent an email to my breast surgeon begging for help and she admitted me to the hospital. I had a partial brain MRI that revealed the mass on Monday, and Tuesday we learned it was 3.5 x 5 cm in my right cerebellum. It was quite large and amazing that my symptoms were so limited. I had a craniotomy two days later and it's going to be more months of recovery, treatment, monitoring and uncertainty.
It is not unheard of for HER2 disease to do this so don't be caught unawares. There is room for hope and it is a chilling advancement in my care as well. Going to heal and press for full recovery once again, perhaps with experimental therapies
.
Reminder to us all- in any oncology patient, symptoms which continue to get worse and are unexplained need to get evaluated for CNS disease as soon as possible. Lie if you have to, get peace of mind or catch something early.
Comments
-
Thank you for posting this, agness. Really important info as I'm one of those who got brain mets about a year after standard chemo (with H and P) and radiation. My mets were discovered because I complained of headaches which my onc said were related to my degenerative disc in my neck/spine. So imagine the surprise when mets were discovered. She says I am asymptomatic even though now I have 11 lesions.
0 -
another thank you for this. it's a scary topic but I prefer to know more than less.
good work on persevering and getting the care you needed. I hope your recovery is fast and as easy as possible & you enjoy many lovely and uneventful years.
0 -
More, and she says she has a very low threshold on brain MRIs for HER2 patients. Your doctor should as well.
"Michelle E. Melisko, MD, of the University of California San Francisco Helen Diller Family Comprehensive Cancer Center, discussed management of brain metastases. Overexpression or amplification of HER2 is associated with a high risk of brain metastasis, with several trials showing the incidence rate ranging from 31%-43%. Although many patients with HER2-positive disease develop brain metastases, "their survival is actually favorable compared to other patients with other tumor types,"
https://am.asco.org/questions-remain-about-optimal-treatment-her2-positive-breast-cancer
0 -
Agness, thank you so much for posting. It is important for us to be informed and aware of what we are dealing with. Actually I got sad and upset when I read in your post that you have been diagnosed with brain mets. I first came across your name from the "TCHP-Post your results here topic" that you headed. And then I realized that you had a pCR. It's seems there is still a lot to be learned from this type of cancer and the new treatments. I wish you best of luck during your treatments and hope and pray you have excellent response. Hugs
0 -
Does this apply to spinal fluid and brain. Im so confused. I forgot the name now. A month ago I started getting seizures and the nuerologist they sent me to said she wants a spinal tap to check for cancer and she will keep repeating it since spinal tap has 50/50 chance of picking up cancer. I had eeg in hospital which picked up seizure and mri was normal im on anti seizure meds. Im on herceptin but havent started tomaxifan yet . Im so lost. Any input appreciated.
0 -
mye - thanks for checking in. Yeah, I had a great systemic response to TCHP but somehow I had brain mets growing uncontrolled in my body in tandem. Never was it mentioned as a risk for my HER2 and we asked a lot. I even mentioned it to my MO that the risk was quite high -- much higher than leukemia from chemo for instance. He spluttered and said its really small -- but It isnt
DSW - anything is possible. Spinal mets is rarer but still happens. Reading through the death and dying thread on the Mets forum today I found a bunch of HER2 gals worried about brain lesions, even with Perjeta treatment.
Some studies have sort of indicated an increased risk of brain mets due to herceptin treatment -- like it slightly increases the risk.
How the F did they not tell me? How did everyone miss how sick I was. Ugh
0 -
I'm so sorry to hear about your seizures dsw1976.
Are you referring to leptomenengeal metastases? Did you get your tap results? If itcomes out positive, there is intrathecal herceptin to help. I don't know much about it, but I'm sure Agness will be back to respond.
I just wanted to reply to your post because I understand how scary this can be.
I did a year of herceptin, too. And I hope that is what helped to keep my body clear.
0 -
Agness, You are right, we should be told of this significant risk, and it should be managed acciordingly post chemo, and surgery. I will make sure to mention this to my onco at my next visit. Again I thank you for sharing.
So you believe that the brain mets where there and growing while on chemo? Did you ever have a pet scan done during diagnosis or chemo?
0 -
I had a PET scan at diagnosis since they thought I was stage 4 but they didn't see anything. The scan might not have gone higher than the neck. I kinda think they were thinking that without nervous system symptoms there wasn't anything there.
I stopped Herceptin at the end of January and by Easter started having symptoms of a brain mass with the dizziness
0 -
pet scans do not go higher than neck I had one and I am thinking of asking my dr for a brain mri this is very scary to me I know you had started the tchp thread and had great results so upsetting that you had these brain mets the whole time and nobody checked i know chemo can't touch the brain I have another pet scheduled aug 26 I am going to request them to either include the brain or give me a brain mri why should we wait till we have symptoms for this to be done
0 -
I had nodal involvement at diagnosis so I did fall into a different category of patient which shouldn't have been overlooked.
Upping monitoring doesn't yet increase OS but if it was caught in April/May instead of July it might be smaller and more manageable and certainly I wouldn't have been trying so hard to regroup from uncontrolled vomiting and being unable to care for my family and self. They really need a different protocol for those of us at risk for CNS disease
I don't know if I would be concerned with IDC stage 1. Your prognosis is still very solid.
0 -
at this time I am stage 1 I didn't have an SNB they are just going by a pet scan which we all know isn't 100 percent accurate I read I had a thickened lymph node on my ultraspund I am still upset nobody biopsied this before surgery why wouldn't they? I see stage 1 jump to stage 4 a lot such a scary disease
0 -
IM so sorry what you are going thru Agnes. It's scary cause before I got the breast cancer that I didnt think was even possible to get cause I had such little boobs so young I thought they had come so far with cancer. I knew they didnt have a cure but I thought they at least had treatments understood better. Now to find out in the end we are the mice. Im so sorry for what you are going through. And for those that say how lucky we are that we are her 2 positive I dont understand its a more agressive cancer. At least all my Dr.'s have.told me. Yes we get herceptin cause we need it to save us from the extra excellerator. Take care. Sorry about asking about my question I wasnt sure if it.was the same.thing I have no clue. I was blind sided by this. It is that L thing mentioned above thanks.Good luck ladies.
0 -
I'm triple negative, but I just wanted to chip in because a friend was recently diagnosed with brain mets, actually from a previously undiscovered inoperable lung primary.
We sing together, and it was members of the chorus and our quartet who noticed something was amiss. This normally detail orientated, well turned out lady, just began to behave oddly, seemingly scattered mentally, eg drove to rehearsal in her reading glasses, and having memory problems. We had a hard time persuading her anything was wrong, and someone got into terrible trouble for calling her husband behind her back, but we eventually persuaded her to visit her GP, who thought she might have suffered a mini stroke, but luckily agreed to arrange an MRI.
Hers was a frontal lobe tumour, which explained the behaviors, as it is where the higher cognitive functions occur. The lung tumour was completely unsuspected and was inoperable, but she had brain radiation and is now on chemo, and she thinks she is Superwoman, bless her!
Just be aware of anything odd and new going on, be vigilant, and don't take no for an answer!
Good luck to you all xxx
0 -
Agness, please keep us posted on how you are doing. I wishing all the best for you. I pray thatthe brain mets resolve and you get peace of mind soon.
0 -
hi Agness, I found this in case you are interested:
https://clinicaltrials.gov/show/NCT01983501
I don't know much about it so I didn't post earlier and it's not in my area. But if it's promising, I'm wiling to travel! There is another trial with the Same drug.
I wish there was a forum to talk about clinical trials for brain mets. I'm posting it here but maybe someone help me find a better place where we can talk about various brain mets treatments. I'm joining a different clinical trial and I don't know where I should post my info.
0 -
letranger - let's start a thread in the mets thread about brain clinical trials. I think it is a separate thread worth adding
0 -
Here's my soft list of symptoms in increasing complexity in case it helps:
- Dizziness
- Loss of balance
- Increased pain upon waking, took a while to get used to sitting upright
- Sore neck and shoulder where I never injured them before
- Inability to carry a purse
- Symptoms of occipital and trigeminal neuralgia - driving pain sensations on right side of head and face
- difficulty walking
- need to keep head in straight, neutral position, started wearing neck brace
- inability to sleep flat on back
- needing to use ice pack on back of head to control pain
- increasing symptoms of pain and nausea
- uncontrollable nausea
- inability to self-care- loss of appetite
0 -
Agnes - so sorry to hear of your brain mets. I will keep you in my thoughts and prayers!! But THANK YOU for posting this. I just left my MO's office for my 3 month follow up appointment. I finished H on April 21st and about the middle of May started having daily mild headaches. They feel like mild sinus headaches without other sinus symptoms. We went away for July 4th weekend and I forgot my arimidex and had no headaches that weekend so I decided it was that causing it. Told my MO about it today and he agrees that it is most likely the arimidex BUT since I am HER2 - he wants me to stop the arimidex for 2-3 weeks and if I still have ANY headaches - even if they are different then he wants a brain scan. His concern is because I am HER2+. Your post really helps me in understanding his concern.
0 -
My PET scan came back clean except for an ovarian cyst and slight activity in my throat, possibly from being intubated.
I can't explain it but I have been working this so much from every angle.
My chinese medicine doc thinks he can heal me the rest of the way.
0 -
That is good news!!
0 -
did you have a pet of the brain my pet did not do brain so I am having a brain mri next week all I did was ask for one and my mo simply said ok kind of scary
0 -
yay for the good news on a clean PET, agness! I also feel like you are beating the odds and you're going to be NED after you get through this hurdle.
Plus, We need you here to guide us through this HER2 stuff! So, let's start the discussion on clinical trials on a new thread. You seem to be more experienced, will you start it? I just started my clinical trial/meds yesterday. I'm waiting for it to hit me, but I'm feeling ok. Hoping it's my miracle combo! I'm sure this sounds disjointed but I'm using my phone so I have to be brief. But I wanted to check in. Talk soon!
0 -
Ok, I've been thinking about this question:
When does a person get a spinal tap done? I am her2+ and I have several brain lesions. Do I need to ask my onc for a spinal test? How accurate are the tests? Am I being overly cautious? How is a tap done?
0 -
I'm supposed to get periodic spinal taps to check for CTCs. Not sure when that starts
0 -
what are CTCs? Did you ask your Onc for it or did they recommend it? Thanks.
0 -
CTCs stands for circulating tumor cells. My neuro-oncologist recommended it. Other than a lumber puncture I'm not sure much how it works.
0 -
I am glad you posted this. I had a brain stem stroke at 31. I feel it puts me at more of a risk but my doctors have not even referred me for an MRI. I have headaches all the time of course. That is my normal. I did have a severe migraine that required me going for a shot though and that was not normal. I will insist on an MRI. I need to take charge. I wish you the very best.
0 -
There are a multitude of symptoms of brain mets. Mine was to the cerebellum so I had difficulty with my balance, bad headaches, nausea. I've read of others who had symptoms of sudden onset psychosis, seizures, stroke symptoms, etc. It depends entirely on what part of the central nervous system is affected.
Evidently using taxanes (taxotere, docetaxol) can also increase the risk of brain mets. I guess it just goes to show that we need to be vigilant as if we catch things sooner we will be stronger and they will be smaller and more manageable.
0 -
Taxotere, Docetaxol increases the risk of brain mets, you say? Do you have some article that you can link? Unless there is proof (aka randomized experimental study), I would say what is more likely is that there is lack of efficacy with these drugs successfully penetrating the blood–brain barrier and having a therapeutic effect on tumor cells. So met risk in other parts of the body go down while CNS met risk might stay the same.
0
