Working thread - what do you think the HER2+ standard of care should be really?

forher · 01-07-2016, 12:45 PM

I haven't had a chance to read everyone's posts. But I wanted to resonate a few points probably already suggested and more:
1. connections to a integrative or nutritionist
2. brain scans at dx (I got one) and 6 mos thereafter esp if there is lymph node involvement
3. bone scans at dx (I got one later)
4. some sort of preventative protocol like Kadyla or Tykerb or Xeloda esp if there is lymph node involvement
5. I had a "chemo teach" when I first started treatment to help explain tx and drugs...How about at Her2 teach to inform patients about Her2 disease and targeted therapy should we need it in the future.
6. Her2 "specialists" in the clinic who actually know about our disease, or access to one. Onc should know who to refer to in case of Her2 q's and we are definitely all different in our disease
7. Labs to check CBC's, Vit D, zinc, etc
8. More info on clinical trials and drugs in the pipeline for Her2
9. alternatives to WBRT. Yes, they can do SRS on several lesions. So why insist on WBRT??

My brain mets were only discovered because I got severe headaches from a degenerative disc at C5. If it wasn;t for the pain I was getting in my shoulders, neck and head, I would not have gotten the MRI that found brain mets. We discovered my degenerative disc at diagnosis, when I was 40. My MO thought my disc was causing more problems and ordered the MRI. Boy, were we surprised when 4 lesions showed up on the MRI! I'm still living with those lesions, but I have to do my own homework to find alternative treatments to WBRT.

agness · 01-07-2016, 03:32 PM

For any HER2 patient with brain mets caught early enough to treat with rads, the standard should extend up to 30 lesions to treat with SRS, especially since it isn't the technology that is making the limitation -- they can do them all.

Any HER2 brain met patient should be given detailed instructions about concurrent metabolic practices that the patient can add to the treatment regime to both boost efficacy and also to help protect the patient. This also should include post-care instructions for restoration after brain rads.

Any brain lesions requiring a craniotomy should be irradiated beforehand to lessen the risk of disease spread during the surgery.

Brain mets patients should be offered adjuvant treatment to try to control disease progression as soon as they are discovered in a HER2 patient. (we need more drug trial results damnit!)

thinkpositive · 01-07-2016, 06:11 PM

Agness,

I agree with your recommendation regarding surveillance for brain mets. It seems that with HER2 disease (with nodal involvement) the risk of brain mets in the first two years from initial diagnosis is high enough to warrant screening. I also agree that those who do have brain mets should be well informed on options for treatment, side effects, how best to minimize these side effects, and what to do to get your body and brain back to optimal health.

Take Care,
Brenda

AMHarrison · 05-13-2016, 09:32 PM

I received my 2nd dx of brain mets nearly 2 years after my original HER2+ dx in 2014. Now I'm dealing with this and was initially offered surf/wbrt/chemo. Not keen on the wbrt so searched for a 2nd opinion and now on a clinical trial. I'll find our the prelim results next week and am hoping for another radiation therapy (stereotactic, gamma knife) besides wbrt. Too young (just turned 41), wife and mom - shouldn't be going through this. Hate cancer and can't believe my original onc did not do MRI testing on my brain to find these lesions sooner. She basically took my life away from me!!

Colleen · 05-13-2016, 11:01 PM

Unfortunately it appears the "standard of care" is let's wait till the brain mets are significantly symptomatic enough before we start diagnostic testing. Stage IV it should be routine! Thankfully two syncopes I can get brain MRIs if I request them.

scrunchthecat · 05-14-2016, 09:39 AM

It seems that the cancer-industrial complex has some statistics about how well patients will respond to specific treatments, based on results from both IHC and the FISH test. IHC grades HER2 from 1 to 3 (where 3 is positive), and FISH uses something called the HER2/CEP17 ratio, where anything greater than 1 can be positive. There is at least one study that shows that if you have a HER2/CEP17 ratio greater than 3, you are more likely to get a longer-term remission on a first-line of anti-HER2 treatment (TH in this study, as there was no P yet), and if your HER2/CEP17 is less than 3, you are likely to have a weaker response to Herceptin.

So why are HER2 patients not made aware of this calculation? For example, it seems that, if you have a HER2/CEP17 higher than 3, you might want to continue with Herceptin paired with other therapies after your first-line treatment, and, conversely, you might want to look beyond anti-HER2 therapies if your HER2/CEP17 is less than 3.

Article is here: http://www.ncbi.nlm.nih.gov/pubmed/23673443

I am sure there are other, similar studies that could help patients in their treatment decisions. The best solution would be to have everyone's tumor sequenced. I spoke to the folks at the Metastatic Breast Cancer Project at the Living Beyond Breast Cancer conference in Philly, and when I asked whether those of us who had submitted our tumor samples for sequencing might be able to get the results of those samples, the response was: It is more likely that the insurance companies will agree to pay for tumor sequencing before we would be able to break the confidentiality of our study. The MBC project folks are quite optimistic that insurance companies will begin to pay for this soon.