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

Agness - Thanks for starting this! I don't have a lot of original material to add, but I can underscore some of your points:

1. There needs to be a better understanding of, and a better communication to the patient about, the role that the lymph system plays in HER2+ cancer. I had lymphedema as a symptom of breast cancer - I noticed my arm swelling before I was diagnosed, and before I was ever treated. At diagnoses, all of the doctors - my GP, BS, MO and all of the second opinion docs - just shrugged their shoulders at my weird lymphedema. I just happened to go to a breast cancer support group 3 months in, and met my lymphedema PT. None of my doctors had suggested I get lymphedema treatment. My lymphedema PT has worked magic keeping my swelling under control, and has given me the best advice about how everything from diet to exercise to my clothing can help or hinder the flow of the lymphatic fluid. What she is less knowledgeable about, and what I wonder about is how does this draining of the lymph fluid out of my cancer-damaged lymph nodes in my right arm impact the rest of my system, cancer-wise? My latest PET-CT shows that all of the hot spots in my lymph nodes and elsewhere were resolved, but is there any problem with draining the stuff out through them? My onc thinks that dead tumor cells are essentially lymphatic fluid, and therefore lymphedema treatment is a good move because it helps the body to eliminate them. It would be great to have the connection between the lymph system and cancer clarified.

2. Agness, as you were so kind enough to respond to my question about lymph nodes and brain/leptomeningial mets, doctors and patients need a better understanding of the connection between the lymphatic system and the CNS and how to manage this connection to prevent recurrence.

3. A better understanding of the connection between HER2 and immunotherapy. First, how can we, as patients, strengthen our immune system to help fight HER2 recurrence via diet and supplements? I am going to ask my ONC to measure my Vitamin D levels, but he may refer me to my GP for this blood test. Why can't we include some kind of "immuno-panel" with our numerous blood tests? Second, we need more access to clinical trials that look to prevent recurrence of HER2 through immunotherapy. AND those trials need to be better funded for Stage IV. I know of at least two trials that are having problems raising money: One at U Washington, which has suspended the recruitment of patients, and another at UPenn that I just learned about, which is struggling to start the patients who were lucky enough to get enrolled because of a lack of funding.

4. We need a higher visibility of HER2 disease. Someone wrote on a board: There are a lot of HER2 therapies because it's so aggressive, it's easy to grow quickly in the lab and figure out ways to kill it. We need a marketing campaign aimed at eradicating death by HER2. We could make the argument that, although it touches only 20% of breast cancer patients, it is well understood enough to target for eradication. Big funding likes the idea of being able to not just help a disease, but eradicate it.

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

All patients should be encouraged to, and explained about, why they should ice their hands and feet -- to prevent neuropathy. Patient equipment should include materials to aid in providing these services concurrently with treatment to all patients.

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

This should be the standard with all our breast surgeons now, especially after sentinel node dissection (SND). I tapped into this early and only had three nodes removed even though I lit up like a Christmas tree when I was first diagnosed. Neoadjuvant chemo (TCHP) dissolves them all and only scar tissue was found.

Most women with early-stage breast cancer avoid extensive lymph node removal
http://www.medicalnewstoday.com/releases/291599.php

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

In response to the post above by scrunchthecat, I told one of my docs as much - I said we are curing cancer, not all the time but a lot of the time. It doesn't change my lot but let's own that and celebrate that. It is a ground-breaking shift for HER2 disease, as we used to have one of the deadlier forms of the disease. Yes we are only 20% of all breast cancer patients (10% HER2+/HR- and 10% triple positive) but huge strides have been made with targeted therapies, a form of immunotherapy (another thing that deserves recognition).

Own it!

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

How about mentioning the option of Foundation One testing to those just diagnosed and letting the patient decide if they want to pay for outside testing to get more info about their cancer?

It is patronizing to not even mention that there is more that could be done or learned about.

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

Absolutely! Great thought, Agness!

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

I am thinking that the recent study showing that Tykerb (Lapatinib) plus Herceptin (Trastruzumab) should be used for more HER2+ patients. At least to reduce the amount of chemo given.

My blood production was permanently altered (at the low end of normal now) and doctors say it was likely the carboplatin that did it. I think finding ways to eliminate the mutant cell line without causing permanent harm to the body should be elevated in oncology treatment.

Along with a shift in treatment should come monitoring MRIs to watch the cancer dissolve. I know that just two years ago was a researcher at Seattle Cancer Care going to follow neiadjuvant patients via imaging to watch how breast cancer shut down as treatment worked. I can only assume that they are still some years out from putting this into practice with patients but it doesn't mean that we can't demand a better standard of care. Why not try and see if we can do less and track the changes rather than do more and hope it was enough?

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

As a stage IV HER2 patient I was not offered a brain MRI or suggested to have one even though I had a lymph node above my clavicle involved, which was not noted in the first PET/CT but was noted in the second one 3 months later and the first one was amended. But due to having a syncope after my fourth cycle of THP I got a brain MRI via a neurologist, and a second one a few months later. Both were clear! When I asked my oncologist if she recommended them she not unless there are symptoms, I was shocked! Especially as I had recently visited with another oncologist and he said he likes all of his more advanced stage breast cancer patients to have a brain MRI at the one year mark from dx whether or not they have symptoms. A bone scan is probably not needed due to the CT and PET scans most of us get of our torsos. I do feel that advanced stage BC patients should get the best testing available on a regular basis with brain MRIs yearly. It is up to us to be our own advocates because the medical community isn't going to do it for us! I am into year three as a #lifer and feel like because I am stable I am being tossed aside by my oncologist, maybe time to find a new one?

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

Don't we all wish this were possible in all cases? I'm still in therapy for stage II BC and had to decide whether to do radiation - declined that as even the radiologist indicated in my case it might do more harm than good and still have to decide about Antihormonal Therapy as, contrary to what was said initially, 2% ER (in DCIS, none in IDC of same breast) isn't nothing and has to be treated as per guideline. They hide behind guidelines, I have to decide, frantically trying to gain knowledge I need in order to make that decission.

Always "Better safe that sorry" and we end up accumulating all those side effects, some of them irreversible.

With chemo as it is now - I got the same treatment, same results and still waiting for leukos to get up to a decent level - there's the problem that's the one real problem cancer cells always pose: They learn how to grow under any circumstances because they have forgotten how to die when defect. So if they get hit with something that doesn't kill them all at once you get some live ones that easily replace those that could be eliminated by this therapy. And you end up with even faster growing cancer, now completely resistant to this therapy. Some Her2 cancers can even be radiation resistant if I understood that correctly.

For me the most promising way out of this seems to be the approach to teach the immune system how to recognize cancer cells as to be eliminated and get our own bodies to sort this out properly. It can't get any more selective than that.

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

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!!

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

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.

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

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.

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

This is a wonderful tread with useful info. Thank you!

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

So here's a new issue that has come up in a couple of cancer discussion boards recently: Why must we all receive the maximum tolerated dose? Why is that the standard of care? An article recently suggested that it might be better giving long-term patients lower doses, once the cancer is under control, to ward off resistance. (I'll see if I can find the article.)

Makes sense to me.

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

Scrunch, I think it's similar to taking advil or Tylenol. Most people need 2 tablets. But not all. The trick is to find your own sweet spot, and still get enough of the dose to be effective. This is not the first time I've heard of doing lower doses. For me, less is always more.

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

Great article! For those of us who read this how many went running for their initial diagnosis information? I certainly did! My HER2/CEP17 ratio was <8 and I am 4 1/2+ years out from a stage IV dx and have not had a recurrence! Woohoo! However when I read scholarly articles like this I always try to consider how many times have these results been duplicated. Not to be a bubble popper here, one study is not truly conclusive, it takes repeating these results over and over again, hence why clinical trials take so many years.