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

If you have been around a while then you know that Perjeta is only a couple years in use with the locally advanced breast cancer population. Some patients and their docs are adding it on adjuvantly for earlier stage disease, such as when a patient has surgery first and learns that she is stage 3 after the fact. Research shows that HER2 responds best to a dual anti-HER targeted therapy regime, that a Herceptin and Perjeta work synergistically with the patient's immune system. Logically this means that really all HER2+ patients should be offered Perjeta, but I think insurance still fights it often and some docs fly alone (I know someone who got both Herceptin and Perjeta for a year).

Studies of neoadjuvant TCHP (Taxotere, Carboplatin, Herceptin, Perjeta), on which professionals use to adjust their practices and insurance companies use to justify their financial support, aren't due until summer 2016. Up to this point research from the stage 4 trials was just applied by the FDA to make these drugs available to stage 3/locally advanced patients. So, the data used to inform professional practices will be at least three years old when it might be used to change practices. Not good enough.

HER2+ breast cancer patients with any nodal involvement, a very high risk with our aggressive disease, should receive screening brain MRIs for several years without any push back -- it should be standard at diagnosis and annually at least. I think even better might be every six months for the first two years since for many women brain Mets are caught during adjuvant Herceptin. The sooner brain mets are caught the more options there are to treat them.

What else do you think needs to change? What didn't happen that should -- and at what disease stages? Where do you see lapses in logic, science, and disease understanding?

Let's compile our own thoughts and maybe we can build a HER2 patient manifesto from our ideas that WE can use to establish a new standard that is more appropriate to our disease.

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

I would like to have all HER2 patients receive basic nutritional labs at time of diagnosis and then to be able to choose to work with someone trained in integrative medicine to restore.

Copper and copper binding protein (ceruloplasim)
Zinc
Ferritin
Vitamin D

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

Here's another idea, in the past 18 months the standard of care has shifted from full Axillary lymph node dissection to sentinal node dissection (SND) based on a large body of evidence that hacking up women's armpits wasn't affecting survival at all and they were causing a lot of lymphedema. I only had a SND because I pushed for less surgery.

After my lumpectomy and SND revealed no disease SND I was told I was NED I was still pushed to get rads. Since I have kids and there isn't really data or studies to the contrary (women who decline don't get tracked or count in oncology most often) I decided to do proton therapy and cause the least amount of damage possible to my body. The tsdiation oncologist refused to do less and so healthy areas of my breast and chest wall were included ("I doubt you will find anyone willing to do less")

I think that any HER2 patient who has a PCR to neoadjuvant treatment should be able to skip rads. The bigger issue for our disease is brain mets. If you don't have a PCR then definately proceed with rads.

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

43 people have read this thread today and no one has anything to contribute?

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

For survivors & aftercare: I think there should be primary care doctors assigned to HER2+ patients for aftercare. I know I am so frustrated with my aftercare, I think it's been harder for me after treatment trying to get my body healed and having a doctor who understands all that I've been through. The only doctors that seem to know anything about my type of cancer is my oncologist and breast surgeon but they are only available at specific times like 6 month or yearly checkups. I have met with so many primary care doctors and all of them have no clue on what HER+ cancer is - I find myself schooling them on this disease. We should also be told the effects of diet and cancer and be given nutritional maps to follow - I agree with Agness on the need for integrative medicine.

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

Sorry Ann
I'm one of the 46 who have read your posts.
Not sure what to suggest.
Would agree with blood test for VIt D, Minerals etc.
Would like to see CT scans being done asap for all (mine took 3 months & too late)

On further thought - full discussion with all info and options would have been helpful.
One size fits all not the way to go.
Juls

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

I will be at 2 years since DX in March and at that time my onc said I will only see her every 6 months - unless some problem comes up. I feel like I am being kicked out of the nest. I have never had an brain scan of any type during all this. Maybe because I was only stage 2? My blood work has always been "very good" - mo's words/opinions. After care and how to get your body back instructions/information does seem lacking. I like to believe the less is more approach is because the medial team is certain I am fine now.

Prior to treatment I wish I would have asked more questions but I was so shell shocked I just went with the program. In hindsight I would have asked about how much each part of treatment affects outcomes so I could have weighed each against the side effects and diminishing returns, so to speak. Of course I think many of the side effects weren't mentioned or were glossed over.

I agree - one size does not fit all.

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

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.

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

jra40 and Donna are totally spot on, and not just for us HER2 gals. I think we all have felt like complete afterthoughts after active treatment. My primary care doc was willing to do my follow-up care but he admitted that oncology was out of his practice area and wanted my MO to let him know what he was looking for. If that had happened then maybe my brain tumor would have been caught sooner.

Since I have been diagnosed as stage 4 they have gotten more interested in me by far, paying customer and all, but they still had no idea how to handle this disease progression which has always been entirely logical and could have been anticipated.

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

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!)

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

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

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

Just a quick one re brain scans and lymph node involvement... I did not have cnfirmed lymph node involvement (the tisseu thatvwas taken out as sentinel turned out to not be a lymph node at all). It is unclear why / how - theory is that my tumor may have been connected to lymph nodes under the sternum, even though it was located "at the top of" the breast - basically across above the nipple. However, none of those was ever abnormal in any of my CT scans since diagnosis.

Nevertheless here I am with numerous brain mets not even 2 years after MBC diagnosis de novo. I say: You HER2+? Get brain scans. Regularly.

Then again: this topic is now near and dear to my heart...

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

My brain tumor tested positive for GATA-3, usually found in luminal (HR+) breast cancer types -- but I'm all HER2+/HR-. A cancer researcher told me that platinum based chemo was less effective and not needed really with this mutation. Carboplatin has the secondary action of depleting magnesium firing treatment but my magnesium levels were crazy loe at time of diagnosis and stikl out of range until I really researched magnesium replenishment and used a multi-approach that makes cal-mag supplements pale in comparison. This makes me think that I didn't need Carbo at all, TCH might have been enough in my case.

This is another time where up front nutritional assessment coupled with data and research can save $ and patient pain and suffereing. I have tinnitus in my right ear from carbo, plus I can't take aspirin anymore and it made my limbs weak for a couple months after treatment was done.

Why not test for GATA-3 up front, why waituntil there are mets?

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

Are there typical signs of brain mets? I feel like I need to do as much recon and intel gathering on my own rather than expect my onc to be on top of everything!

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

Hi Agness, I have looked at posts and not commented for years. I have always felt like since I was just stage one that I would stay in the shadows, but I am beginning to sneak out a little!!
I was very frustrated from diagnosis that there was not more support about the particulars of Her2.
When initially diagnosed, a friend of mine from middle school got in touch. She was SO helpful and had completed her surgery and treatment for stage 3B Her2. My friend was such a support and made clear to me that her cancer would recur. It has and in a big way. Brain, liver, and bone mets. She is an amazing friend and has done everything possible to beat this disease.
Together, even before her recurrence, we sought out additional guidance regarding diet, supplements, lifestyle changes. I have always come to this site for information.
I will never forget scheduling an appointment with a nutritionist at a breast cancer support center in Atlanta. I was thrilled to have found it and was looking SO forward to my appointment. The nutritionist pulled out the food guide pyramid. I kid you not. That was all she offered. Well, and to walk 30 minutes every day.
Eventually, my friend found an integrative professional with expertise in Chinese medicine in Atlanta (Piedmont Hospital) and we have both gone to him. I am very happy to have something else I can do in the way of supplements to decrease the possibility of a recurrence.
Scared that watching the CA 27-29 number is not enough.
You guys are so special and this site means so much to me. I speak for the many others that have never posted, although they depend on your advice so much!

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

Thanks for starting this thread. My two and a half cents:

As far as brain scans, if you are early diagnosis, it seems like ONE baseline PET/ct and brain MRI is reasonable to make sure your disease is "just" local, even with node negative, it seems reasonable for your onc to stage you for certain this way. Some docs also do a bone scan - still don't know why they need bone scan AND Pet/ct.

IF YOU ARE METASTATIC or have ANY type of recurrence, after completing initial treatment, I would insist on another PET/ct and BRAIN mri for safety sake. YOU DON'T WANT TO WAIT FOR SYMPTOMS OF BRAIN METS. Find those crappers before they find you.

Also, make sure your surgeon sends your tissue sample/biopsy for an in-depth molecular profiling - some places have very specific rules for submitting fresh tissue, they have kits, depending on your location. Your ONC should be familiar with this VITAL step!!

Lastly, I would recommend starting a notebook, with dividers, and BE METICULOUS in getting copies of all of your test results, copies of scans, and flow sheet to show treatment records. I was so glad I did this from the beginning, and I am still amazed at how much I forgot about those early years of hell :)

As a 20 year survivor, including 8+ year stage 4, there is no way a doctor can review my charts and give any opinion, wether it be a first opinion or second opinion. I keep a word doc that I call my "patient overview" - all pertinent info from 20 years on 4-5 pages. That way, I can easily print out a copy or email for second opinions. Similar to my signature, line item style, year by year with only highlights. Then, if a doc wants to see a specific report, I have my notebook handy with those copies.

Well that's it for now. Thanks again for compiling!!

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

Ideally we are going to catch brain mets before they progress like in me and freakzilla's girkfriend but the reality, when you look at both of our cases, is that we both recurred after craniotomy. I was not on any drugs when I had to have brain surgery snd I think she wasn't either. The CSF levels with Herceptin are barely anything though and we know systemic therapy won't stop brain mets. There are lots of case studies in pubmed and some of these breast cancer forums of HER2 gals who had brain mets found during Herceptin treatment as well. I think that it just depends on how late you are disgnosed and how fast your cancer cell line moves.

Anyway, back to what we saw with me and our other craniotomy patient this summer, if you have a HER2 tumor I think it is safe to say that surgery will create disease spread. We both had evidence of recurrence in the tumor bed within 6 weeks post op. The standard time frame for SRS brain rads here in the States is 4-6 weeks after surgery. The thing is that you feel like shit after having had your head cracked open so even 4 weeks feels aggressive to the patient. It can help but I don't think its enough as HER2 is responding to nornal growth hormones in the body and going nuts. Plus, MRI is completely inaccurate unless there are more than 109 cells massed -- if disease is spreading like a film on your brain they can't see it until it starts to mass up.

Here's my rough list for patients with HER2 brain mets needing surgery:

1) try to zap the tumor before surgery if you aren't on death's door. It is a developing practice and it might not be enough but at least you are trying to thwart inevitable disease spread. After consulting with the head of radiosurgery at Swedish Hospital this week I think this can be done, she mentioned that neurosurgery and oncology wouldn't really start their or consult with them about this. I know that this can be the truth in different discipline areas -- such as fibroid embolisation done by an interventional radiologist won't bd offered by an OB/gyn even if it is better for the patient. My tumor board included all oncology disciplines however so you might need to consult outside on your own if you can. They missed me and I was given 24 hours to live, not much wiggle room there.

2) get on a keto diet ASAP to lower CSF glucose and start challenging cell lines metabolically. We can't affect our levels of growth hormone yet but our cancer cells are obviously seeking out the shelter snd high sugar levels found in the CNS and we can alter that environment to slow them down.

3) get SRS after surgery should include a much larger margin than usual. In the cerebellum this wasn't too hard as it isn't involved with thinking and feelings and stuff. In the cerebrum this might be harder. I do know from my consults this week that there are radiation treatment options that can just treat the surface of the brain, I'll ask to see if it is the Tomotherapy machine or a different one. Each facility has different technology available and they don't all have the same capabilities. You might be offered what is available and while good it might not be best for your situation. The one good thing is that it looks like my tumor did respond to SRS as there was no noted recurrent there, so rads can help. Partial brain irradiation like I'm getting might be worth it if you stop disease and don't need WBR.

4) the standard currently is to scan three months later, with HER2 this is too long. I had post craniotomy scans at 6 weeks for SRS planning, then 6-7 weeks post rads, then 30 days, then 30 days -- and the disease kept spreading. It was only after that last scan that they diagnosed me and were willing to do IT Herceptin.

5) IT Herceptin helped me, but the problem is that there was disease massing in the folds and crevices of the cerebellum, hiding from my body and treatments. Getting started with IT Herceptin sooner can stop this from happening -- heck it might even make SRS and WBR a thing of the past for HER2 gals. I asked for IT Herceptin in my post-op visit a month later and was declined, "we might hurt you. There's no evidence of diseas. We don't know what we are treating." and so forth. Again, they can't see it on the MRI, there is a huge rate of recurrence with HER2 after a craniotomy, getting an Ommaya port placed was super uncomfortable but it was better than being treated with watchful waiting by oncology professionals who don't seem to be able to read their own films and it was way better than having my brain nuked with WBR after they started shitting when they realized it was there. The fact is they couldn't see why my facial nerves hurt and were causing intermittent numbness, they also can't see anything that would make them resolve. I tell them though that it isn't my problem that their imaging is imperfect and the reality is that those pains went away after we started IT Herceptin and haven't come back.

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

Another one...

Dexamethasone is given to reduce cerebral edema, and it is amazingly good at that. The problem is that it increases your blood glucose and lowers your immunity which are the two things that are going to make our brain mets more active. Boswellia Serreta is used by patients with primary brain cancer and some radiation oncology professionals are familiar with it. Based on my own trials with it, 1200 mg daily (2, 300 mg capsules taken with meals) is equivalent to lowered standard doses given post craniotomy. You can take both Dexa and Boswellia at the same time however and they don't cross react. So taper off the clinical dose safely and as quickly as possible after brain surgery and use mostly Boswellia.

My naturopathic onc wasn't up on his dosing as much but he did know that you could mix the two and also that Boswellia Serreta (a form of frankincense), as with most Ayurvedic herbs, is best taken in combination. The formula I use is Boswelya Plus. You will pay about $20-30+ for a good formula; stay away from the $7 formulas. It has the added benefit of being good for arthritis, they discovered pre-arthritis in my shoulders post chemo this summer during a bone scan and I am not on hormonal therapy and I got my period back -- so yeah, it was the chemo.

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

I want to see more comprehensive immune boosting work done on HER2 patients. I met another gal on BC-org and she had been trying to burn the candle at both ends with a small child to care for as well; her story sounded too familiar.

The problem is that oncology doesn't look to healing the patient, even as studies show that HER2 does have immunological roots that help it to be an easier target in some ways for immunotherapy.

But many of us are depleted and it doesn't show up in their CBC and they give us standard therapies that sometimes are poorly targeted (see above where logically I didn't need carbo), and taking the wrong things while not building up the system of the patient just weakens the body against the disease.

Magnesium is huge for healthy liver functioning and yet chemo and carbo deplete magnesium. Your liver is what helps support your fights cells in your immune system. Docs don't check and don't know how to restore magnesium.

We need to do everything to elevate the patient's immunity.

Improved gut function is important too. Chemo is way worse than antibiotics but I met others, even on TCHP who were told by their docs not to take probiotics. My naturopathic onc and a dear friend both said take a break the week you are doses and then use those two recovery weeks to restore. I took probiotics and ate probiotic foods. Recently I've added resistant starch, plus I take magnesium ongoing even though Zive been in range since June 2015.

The gut is important in magnesium and Vit D absorption, it is also critical in using zinc-based digestive enzymes to help bind ferritin the in gut for storage and use in the liver.

I have seen that it is gut-liver-pancreas dysregulation that is the cornerstone of this cancer. They have to shift their approach to be to heal patients bodies. This is science but oncology had completely shirked it.

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

Just wondering-

Should there be a new thread started for info/thoughts etc on boosting immune system, diet, supplements etc.
Unless I research myself I get absolutely no extra info/discussion from Med team.

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.