Her2+ and the brain

kathleen1966

I would like to know how many women, stage IV, have Her2+ cancer spread to their brain only or had it spread to the brain first. How closely do we need to be monitored?  Are we being monitored?  Are our brains being watched closely and taken into consideration?  I was told by my oncologist that if I did not have chemo, I had a 60% chance of my cancer coming back elsewhere and I'm not talking a local recurrence here. SO after it was all said and done, I asked her.......what about the brain........Chemo does not cross the brain barrier.  So what is keeping the cancer from setting up a home there.  Do I have a 60% change of the cancer showing up there?  She said that the brain is not a common site for breast cancer to go and that no, I did not have a 60% chance of having the breast cancer metastasize to the brain.  That if it goes ELSEWHERE first, that my chances would be higher that it would then go to the brain but that the brain as the initial site of metastasis was not common.  This is not really what it is saying on the Her2+ breast cancer site that I avoid like the plaque (cause I can't avoid Her2+ breast cancer, which is like the plaque) due to it being too depressing.  The survivor stories I found to be bleak and not hopeful at all. Herceptin also does not cross the brain barrier. So what are they doing to protect the brain?  Just crossing their fingers?  Is crossing your fingers considered top of the line monitoring?  Do others have a strong opinion about this or more knowledge/hopefulness than me?  Thanks! 

greenacres

I have the same questions as you, thank you for posting this.  I'm curious to see replys. 

lassman

Kathleen,

I am HER2+. I had a good response to chemo and even had a PCR (pathalogical complete response) which is supposed to be really good. However, a few days ago I was told that they had found 7 mets in my brain. This was only 8 months out of chemo and surgery! They have confirmed that I have no other mets anywhere else. I was on Herceptin and this seems to have protected the rest of my body but not my brain. As the chemo did not seem to have reached my brain either it does look like they just cross their fingers and hope for the best! 

I only found out about my brain mets when I suffered what i thought was a stroke! Got rushed to hospital and had an MRI which showed the true cause....So depressing. Sorry not to give you more hopeful news. I am still reeling..

Lassman 

  

mom2one

Thanks for posting.  I too have had this question for my oncologist.  I am HER2+ with grade 3 but it is DCIS with microinvasion and they are "hoping" that it will behave like DCIS.  No chemo or herceptin is recommended in my situation.  They are setting me up for a PET scan and an MRI of the brain to make sure they don't see anything else.  How comforting. 

InTwoPlaces

Kathleen,

thanks for posting this, I have thought about the same thing.

Lassman,

I'm so sorry to hear your story... (((Hugs)))

I can forget this whole BC journey for a day, but then it hits me really hard again -  that we will have to live with this worry for the rest of our life...

amlg1

I am 2 years out from dx,I went to my onco May 16the for my 3 month check up.She specifically asked me if I have headaches,and I told her my usual,that I have gotten all my life.Well with that she wanted me to do a brain mri.I didn't see any reason to,I told these headaches are no different than I ever had.She insisted.My thinking for a baseline.Well I recieved a call Tuesday from her,telling there is a 5mm nodule on the left side of my brain,she not saying it"s cancer,it could also be something that was there since birth.So now she wants another brain mri the end of the month,and also a PET scan,then an appt. with her the next day.I am totally freaking out,why does she want to see me,if all clear,she could tell me over the phone...I never thought about herceptin not going to the brain..yikes...how stupid am I??? This really sucks.I think I am more worried now after 2 years than while going through tx.

DianaT

I was diagnosed 01/08, then in 02/09 the dr.'s did a baseline brain MRI and found a 7mm tumor.  The location and size was not conducive to surgery to determine 100% that it was a met, but the onc said he was treating like it was a met.  I was given cyberknife (no real cutting ~ radiation), then put on xeloda for six rounds (didn't loose my hair again), tykerb and avastin in addition to my herceptin.  I have been fine, a little necrosis from the radiation but we are just watching it.

A solitary brain met is rare, but more common for Her2+ girls becuase herceptin is SO effective (I have had clean full-body PET's since chemo - 3 yrs now) however herceptin cannot cross the blood brain barrier.  Tykerb is a pill that is pretty much the same thing as herceptin but can cross the blood brain barrier.  Everything is so new, there is not a whole lot of information we (the 'general' public) can get our hands on to research this.  I have had clean brain MRI's for 2 yrs now, with the exception of the necrosis I mentioned, but this is not cancer.

Prayers are being said for you, I know the feelings of worry and the anxiety of not knowing.  

Faith316

Herceptin and Tykerb work differently.  Herceptin works on the outside of the cells and Tykerb works from within.  Herceptin did not work for me; I was dx with IBC while still in treatment for my initial dx of IDC.  (I was in the midst of my 30 rads and still on Herceptin when dx the second time.)  However, my onc switched me off Herceptin and on to Xeloda and Tykerb.  Took Xeloda for 6 months and still on Tykerb to this day which has been for 23 months so far.  Still NED and hope to remain that way.  Best wishes to you.

lassman

Thanks for all your posts ladies. I have found these encouraging. Most of the time I feel very positive but still find myself crying now and then at the drop of a hat, all very new for me i suppose. 

Diana T - so glad u are still fine after 3 years. At least the rest of my body is clear for now. They are going to start treatment on Wednesday. I will have full brain irradiation first (since their are 7 altogether) and they will check progress afterwards. Then probably switch to Tykerb I suppose.

AMLG1 - I would go with any scans they offer you. The earlier they pick things up the better, however, the ofset is the worry it causes!

Lassman 

  

slousha

FromBCO Treatments&SideEfects- Tykerb

Tykerb can work in people with advanced HER2-positive breast cancers that have stopped responding to anthracyclines, taxanes, and Herceptin. Tykerb also is used to treat post-menopausal women diagnosed with hormone-receptor-positive, HER2-positive advanced-stage breast cancer.

Tykerb is a targeted therapy, but unlike Herceptin (chemical name: trastuzumab)  it is not an immune targeted therapy. Immune targeted therapies are versions of naturally occurring antibodies that work like the antibodies made by our immune systems. Tykerb is a chemical compound, not an antibody.

MiracleMileM

I have been fearful about brain mets since one report I read said 30-40% of Stage IV HER2+++ ended up with brain mets because the wonderful Herceptin that I credit for my NED status does not pass the blood brain barrier.  I researched to see if there were any alternatives that passed the blood brain barrier and were reported to have anti-tumor properties.  I came up with 5:  (1) Curcumin which I take with bioprine to maximize absorption;(2) green tea and green tea extract; (3) boswellia serrata.  There is ongoing research on the positive effect of curcumin on alzheimer's.  Boswellia serrata is used in place of decadrom to reduce cerebral edema and in one report credited with shrinking a brain tumor.   (4) berberine in goldenseal, gold thread, barberry.  I take zyflamend which includes berberine, tumeric (curcumin)  in addition to the curcuin I take separately and (5) reservatrol. 

 I have not had a baseline brain MRI but will talk to my Onc about that. 

marjie

I am nervous about brain mets.  I'm done chemo and rads, and am about half way through my Herceptin treatments but I can't shake the feeling that perhaps now and moving forward, I am just waiting for it to come back.

Don't get me wrong...I have a great attitude and live fully everyday, but I do have these little nagging thoughts in the back of my head.

marymath

 Well I am one of those women you are wondering about. I was treated for Her2+ IBC last year Dec 2009- July 2010 with Chemo, Herceptin, Mascetomy, and radiation. I had a really good response to the chemo and Herceptin and the surgeon said I had no cancer left at all when she performed the surgery. I really thought I would be home free. Now they say I have brain mets which were discovered April 3 2011 with a CT Scan when I went to the doctor for a really bad headache and some dizziness. So in April this year I had my 10 times of WBR and 3 targeted radiations, and have been trying everything else I hear about to help shrink the tumors, all kind of supplements and nutrition. In mid May I had a PET scan from the neck down and have no evidence of any other cancer mets. What is sort unusual in my case is that I have had regular morning headaches for years, and so wonder whether these tumors are actually new and spread from the breast cancer or have been there for a long time. It seems likely to me that I have had the tumors awhile. 

Hopbird

I'm also one that had a good response to chemo, then it was found in my brain.  I had headaches, but that wasn't uncommon for me.  That was last August, and all is well for the moment.  I had to have surgery because mine had grown pretty big, but the good thing was they were able to check it, and it was definitely the same stuff.  My advice would be to use ANY problem as a sign that you need checked.  I had a patient tell me, when I was on chemo, that if I was Her2+ to have my brain checked...her doctor in Florida felt that as people with Her2+ cancers live longer they are going to find it goes there more.  I asked my doctor why they DIDN'T check it, and she said that was just not done.  I would have been more diligent had I known, but it really didn't matter in the end.  Tykerb does cross the blood brain barrier and I started it in January, with good results.

lassman

Ladies,

After my complete response i thought I would get away with things for a bit longer. A full scan has confirmed that the cancer is no-where else. Like you, marymath, I have been having strange headaches and dizziness long before my BC was diagnosed last year. It does seem a little odd, and i am not entirely convinved they are mets. Either way, I suppose this is a mute point since i still have 7 little buggers in my brain that now need zapping.

I start my treatment tomorrow. I will be having 5 WBR (they say five is enough now, at least for the first time) and they will monitor afterwards with an MRI. I will also get Tykerb afterwards which I hope will help slow down the growth. 

Here's hoping this works...good luck to the rest of you

Lassman (i'm not dead yet)

kathleen1966

I am glad we have started this discussion. And I am distressed to hear of Lassman, marymath and hopbird but happy that you have shared this with us! I hope that your treatment will be and continues to be successful.  I wonder why they are not treating all her2+ women with Tykerb in treatment as this is able to get past the blood brain barrier. I had a PET scan before all my treatment but then asked for an MRI of my brain as I had heard I should.  I have had dizziness for years really. They were clean, so I don't think much of this continued sometimes dizziness I have now.  For me, I am very worried about my brain due to the four nodes and the not soo big tumor and the four nodes, meaning this was a highly aggressive cancer in my opinion. I KNOW that the cancer got into my system and feel it will be shear luck if I don't end up with brain mets. I guess we need to be more diligent about the screening of our brains.

marjie

It's kind of one of those "want to but don't want to" situations.  I also seen a few women with HER2+ tumours and no nodes find mets shortly after treatments.  I see my onc in another month and will discuss it with her then, I guess. Maybe...

elmcity69

I just bought a supplement of "BCQ" from Vital Nutrients, which is a great company: their supps have no fillers/soy/etc. It has boswellia, curcumin, and bromelain. i see my onc on Friday and will ask his opinion, although he tends to repeat "there is no dietary or supplemental protocol that prevents recurrence" - and i dearly love him, but inside i'm shouting, "just humour me, damn it!!"

on the brain MRI - uh, no thanks. i get paralyzing scanxiety on the required tests (eg, breast MRI, PET). i've reflected on it, and decided i will never go for it unless (God forbid, please!) i'm having sx.

i do lots of visualization regarding my brain and its health, especially at night and after my yoga practice...it might sound corny New Agey, but i have hope in such things.

janyce

kriskat

To me, this is the scariest. Getting brain cancer has always been my great fear and now I have the kind of breast cancer that has a higher rate of brain mets:(.

amlg1

Kathleen...my thoughts exactly..all the positive nodes,I know it's lurking somewhere,hopefully I am wrong,the end of the month I will let all of you know how my scans came out.Also brain mets scare me so.Although any met would.

lago

Have any of you looked into the Neratinib Clinical Trials? I do hear it does cross the blood/brain barrier. I am ineligible because you now have to be node positive.(I'm the odd egg that's HER2+ but node negative)

I thought I read somewhere that carboplatin does cross the blood/brain barrier.

My initial liver scan showed a shadow but they thought it was nothing. My onc still wanted me scanned after chemo. The new scan (different from the first) showed more benign cysts. My onc is still going to have me scanned again in a year. They are just very careful when dealing with us now. Don't let these scans scare you. My feeling is until they tell you there is an issue don't assume there is. 

Lassman, marymath and hopbird I hate that you are all dealing with this. There does seem to be lots of new stuff for HER2+ Watch the news. Right now the American Society of Clinical Oncology is having a conference in Chicago. (Last day tomorrow). Should be interesting.

marjie

Lago - you are definitely a wealth of information!  I am also node negative and scans so far have been clean.  I was shocked and a little frightened when I found out that with all this treatment I am/was going through, none of it was crossing the blood/brain barrier.  Jeeze....stands to reason your brain would be a good hiding spot for those mets!

sewingnut

Carboplatin is used in central nervous system cancers. It is an alkyling agent that attacks the resting cell. The Taxotere attacks the dividing cells and the Herceptin is the clean up batter.  Hopefully the Carboplatin gets any of those stray dormant cells that may go to the brain. I had TCH X6 and continue with Herceptin. 

mumito

Friend of mine is stage 4 Her2+ and recieved Carboplatin and Gemcitabine. She is now clear NED the doctors here are amazed.She was treated at the Duke intitute in SC.

tougherthanithought

Lago, I didn't realize HER 2+ and node negative were concidered "odd".  Include me into this "odd" group, too

Sherrill

lago

I should rephrase that. Odd to be node negative, HER2+ and have a tumor over 5cm… It's just an observation.

CoolBreeze

Having HER2 cancer does not mean that you have a higher chance of getting brain mets, somebody is misunderstanding.

In HER2 women who already have metastatic disease, 50% will have it end up in their brain. That's because herceptin, the miracle treatment, does not cross the blood/brain barrier.

A woman who is stage II has no more chance of having it spread to her brain than anybody else who is stage II, so you don't have to worry about that.  If you have metastatic disease, that's when you up your odds. 

suzieq60

Well, I'm having a brain MRI next week - ordered by an ENT specialist checking to make sure my tinnitus is not caused degradation of bones or something. I'm really happy to be having it as the brain is the one part of me my onc didn't have scanned. I don't have headaches or dizziness at all, but it will give me some comfort to check if there's anything in there - like a brain

Sue

kriskat

Coolbreeze- thanks for clarifyifng regarding brain mets!

marjie

Ann - thanks for that!  I was totally misunderstanding the stats.  Wondering though why since chemo/herceptin doesn't cross the blood/brain barrier why they wouldn't do a scan of the brain while they are doing everything else?  I had a bone scan, CT of chest and abdomin - why not brain too so all bases are covered?  Just wondering....

Lilyn

Hi Marjie same here. Had bone scan, abdomen and chest imaging but not brain. I feel in Canada oncologists dont want to put us through unnessary scanning unless there are symptoms. I  am comfortable with the initial scanning on diagnosis. When I have h ad complaints eg. leg pain that would not go away for months they were not hesitant to do another bone scan. I am seeing my oncologist in November and will ask him about this. take care. Bye the way great picture!