Her2 neg brain met

[Joan M]

The pathology report on my recent brain met, which was removed by surgery last month, was HER2-.

I was really surprised by this. My lung met was HER2+, and ER-/PR-, just like my primary cancer. It was originally removed by a wedge resection in spring 2007, and a year later there was a recurrence in the area of the surgery even though the margins were clean. The recurrence was zapped with radiofrequency in August this year.

According to my oncologist, there's a 10% to 15% chance of discordance, when the met is not the same profile as the primary cancer.

There's also been a recommendation that I don't add anything to the Herceptin I'm already taking, because now that the brain met was removed and the lung met was zapped with RFA, there would be no way to monitor whether Xeloda or Tykerb was working since I have no other mets. These are the two drugs that I was considering.

Also, what good would Tykerb do on a HER2- tumor? I wonder whether there's discordance because I've been taking Herceptin. Forgot to ask my onc these questions. But I need to find out.

The tumor was tested with the HerceptTest and was 1+, or negative.

I'm still recuperating from the brain surgery, but have started working from home via the computer.

Next week is my appointment with the rads onc to plan for the stereotatic radiotherapy for radiating the brain tumor bed.

Joan

[Becky]

Dear Joan

I'm happy that you are bouncing back. I am writing about Tykerb. Besides the fact that Tykerb crosses the blood brain barrier, it is active against Her 2 and Her1 (aka EGFR) which I think you mentioned to me once that your bc was tested for EGFR and you tested positive.

Tykerb might be a welcome addition to the mix. I would discuss this with your onc.

Let me know the next time you are coming to my neck of the woods or maybe another NYC gathering during the holidays if you're up to it.

Love and a hug from me.

[Lani]

two thoughts--1)perhaps they could test your new brain met for EGFR or other markers for which there are clinical trials in progress ie, IGFR1 (a pathway which can be upregulated, causing herceptin resistance), mTor (ditto), etc.
From what I have heard at my most recent conference attended, the 4th international conference on translational research in cancer--hosted by Dr. Slamon, tykerb's effect is almost only due to its antiher2 rather than its antiher1 effect, at least in her2+ bc. There are other drugs which are specifically anti EGFR ie, Tarceva, Iressa and Erbitux.

Targeted Molecular Diagnostics can also test for her3. There are clinical trials for pertuzumab which is a panher inhibitor by Genentech.

Targeted Molecular Diagnostics in Illinois does test for these markers,ie, EGR, IGFR1, mTor, her3 as well as others.(there are clinical trials in early phases for anti AKT, but these would probably have many more side effects)

I forgot to read your other posts before I started to reply--I assume you no longer have measurable disease in your CNS--hard to get on a trial unless they have something to follow (thinking out loud, here, sorry)

2) Dr. Stephanie Jeffreys has presented at a lecture, work pending publication utilizing a new state of the art technique using microfluidic chips developed at Stanford, a study showing that circulating tumor cells in any one patient are very heterogeneous ie, some are her2+, some her2-. some ER+ some ER- and that in patients with Stage IV her2+ breast cancer on herceptin they were able to find triple negative circulating tumor cells in their blood while under treatment!

It might be some of these renegade cells that are responsible for seeding your brain. Do you know the ER and PR status of your new brain met?

If they are ER+ a new study published two days ago(or at least appearing on Pub Med then) showed that fulvestrant crosses the blood-brain barrier.

If your tumors are triple positive, large group of them are EGFR + and seem to be exquisitely sensitive to cisplatin from what I hear and read.

Erbitux probably doesn't cross the bloodbrain barrier due to its size, but I will try to look into whether Tarceva/Iressa would.

I compare breast cancer with a puppy that wants to get out into the yard to play. If you lock the front door, it will try to sneak out the back door. As it gets exposed to lots of drugs and grows up it learns to climb on the dresser and try to get out the window.

It is for this reason that many researchers and oncologists I hear speak think the answer lies either in blocking multiple pathways simultaneously or
in discovering a marker on the cancer stem cells to eradicate those cells that hideout waiting for a day when conditions conducive to spreading appear.

Hope some of this helps!!!

[Joan M]

Thanks for the reminder, Becky. My lung tumor from the wedge resection was inadvertently first tested for EGFR even though I had requested HER2 testing. The EGFR was highly positive. Then it was tested for HER2, and it was also positive for that.

I'm starting to come around. The Decadron has some "serious" effects, while being both on it and when coming of off it. Let's definitely get together again.

Lani, I really appreciate all the information. I understand where you're coming from. When my lung tumor tested highly positive for EGFR I asked my onc whether I would be able to take a lung cancer drug that specifically targeted EGFR. I can't remember which drug I asked about (could have been Tarceva or Iressa), and will have to look at my notes. She said that the drug only works if a person has a specific enzyme or gene (can't remember which one she said), which is not tested for. It either works or doesn't work in the clinical setting.

The conversation didn't go much further than that because I was NED after the lung tumor was removed (and then subsequently zapped by RFA a year later) and continued on only Herceptin. And now I'm again NED since the brain tumor was removed. So, as you mentioned, I would not be eligible for any trials. The onc where I had the craniotomy had thought about a trial for paptupilone (an epothilone), but he said that the NED status ruled that out. I've also heard about pertuzumab being a potentially good drug for breast cancer. I'll look into mTor and the others for more info, even though I wouldn't be eligible for trials.

The brain tumor was ER-/PR-, just like my original bc and also the lung tumor.

I like your puppy analogy. Puppies are smart and also have steadfast determination.

Joan

[Lani]

is KRAS, but that research was done on/only holds for lung cancer and breast cancer is not just another puppy in the litter but a whole 'nother breed! Noone has done the research to see if that holds in other cancers as far as I can determine (from wide-ranging reading of the literature and conference attendance)

Glad you reiterated that you are NED--the way to be.

Will they be confirming that your brain met was also ER- and PR---otherwise Faslodex might be considered, wouldn't you think?

Again, congratulations on the NED

[Lani]

PS Has anyone looked for CTCs in your blood. The test is available for those who are Stage IV to follow results with treatment==usually in clinical trials, but some oncologists are willing to do it. A new company is trying to make phenotyping of CTCS available clinically (ie, determining the genetic characteristics of the individual cells themselves) Not ready for prime time, but perhaps as part of a clinical trial at a cancer center near you????

[Faith in Him]

Hi Joan,

I am so glad that you are recovering well and are currently NED.

This happened to me also. I wanted my receptors checked after my recurence. I was hoping that they may have changed to er/pr+. Path came back triple neg. I was so shocked. My onc still considers me her2+ so I am on herceptin.

I am interested in learning more about this.

[Joan M]

Lani, Thanks for the heads-up about CTCs in the blood. I will look into that. The brain met tested ER-/PR-, just like the primary and the lung met.

Tonya, It's interesting what Lani's post said about how the different kinds of circulating tumor cells can be very heterogenous (Her2+, HER2-, ER+, ER-, PR+, PR-) and that sometimes in HER2+ patients on Herceptin, a met can be even triple negative. If I find out any more about this I'll let you know. Thanks.

Joan

[schoolteacher]

Lani or Joan,

What is CTCs in the blood?

Amelia

[Joan M]

Hi Amelia,

CTCs refers to circulating tumor cells in the blood. This test would be for Stage IV breast cancer, when it's known already that the cancer is still around.

Joan

[schoolteacher]

Thank you Joan. I am finishing my last TCH this Thursday, and I will be having scans soon. I was first diagnosed IV. I am trying to get as much information as I can about how to treat BC.

Will you please let me know if you get the test Lani is talking about and how much it cost?

I have asked my doctor about the test for Tamoxifen, and he is suppose to let me know about it this Thursday.

I had 2AC treatments and it did not do anything for my BC. I had that treatment prior to finding this board. If I knew then, what I know now, I would have had the test to see if AC worked before being treated.

God Bless You.

Amelia

[Believe51]

You sound so great as you heal yourself, Joan. I have been thinking about you so much lately and this post totally brightened my day. I also found it interesting about the pathology of the met. Interesting. And I know ALLLLLL about the Decadron (wink)>>Believe51