HER2+ patients - we are starting a patient manifesto

agness

I've been here and back with this disease and if anything is clear it is that docs don't know crap about this disease.

We are starting to collect best practices from a patient perspective in hopes of establishing a new standard of care for HER2 patients and we have a great start. Come over to the HER2support forums and share your wisdom:

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

http://www.her2support.org/vbulletin/showthread.php?t=64363

-Ann

Jerseygirl927

ok ann, what are you looking for and what do you want to accomplish?

agness

I want patients to talk. I want standards to shift based on the realities of this disease. Maybe patients can drive a new standard of care not based on professional guesswork (see HER2 ASCO brain mets guidelines from 2014) or driven by insurance cost-savings or csncer center profit motive. Women are dying while they are dinking around.

Read the linked thread and share your ideas.

JCS28

Thanks for starting this thread! This is my first time to comment, but I want to share my experience. I was diagnosed with HER2+ BC back in August at age 39. I was offered the chance to be in a study that uses neoadjuvant Herceptin and Perjeta every 3 weeks for 4 times. After those 4 treatments, by tumor was almost completely gone based on imaging. Then I had a double mastectomy on Dec. 14. There was no cancer left and my nodes were clear. This is all the best news! I do still have to do chemo though b/c HER2 is so aggressive and b/c I'm so young. So I start this week on Jan. 13 with 6 rounds of Herceptin/Perjeta/Taxotere. My doctors felt good about this study and that I would benefit, and they were right. I think early stage HER2+ BC is heading in this direction, but all the data isn't there yet.

Moderators

DearJCS28, Welcome to the BCO community. We are glad that you shared your story. We hope that you will stay connected here and keep posting. The Mods

agness

Yes, i dont mean to take users away and this is a great forum. In this case I'm trying to consolidate patient experiences in one place. But dont absndon your sidters here because this is the best place to get breast cancer info from patients, ive learned so much

Myraknits

Congrats on your test results and So glad to hear this! I'm about to head into a treatment of chemo/ Herceptin and Perjeta before surgery.

Still need more biopsies to try and locate everything so they can watch it all...hopefully shrink and go away! I'm just starting to read up on HER2+ cancer. Anyone have links to good material? I'm not sure what I'm up against.

Annchamama4

I was diagnosed with Her2+, ER+, & PR+ breast cancer in July 2015. I had 3 tumors in my left breast. All were IDC. I started Chemo first. After 3 treatments we did an ultrasound, could not see tumors via ultrasound. Finished the rest of my chemo. Went in for double mastectomy in December 2015, my nodes were clear and my pathology was clear. I had a complete response. Amen! When I was diagnosed, my surgeon said, good news, it's Her2. It responds great to treatment. Even though it's an aggressive kind of cancer the treatment is Amazing. My advice to you is don't look anything up, relax, let the meds work, and do what your Drs tell you. You will get through this.

Moderators

Annchamama4-

That's wonderful news, thank you so much for sharing!

The Mods

Myraknits

thank you so much for this. And congrats!

Moderators

Myra -- some good info on the main Breastcancer.org site about HER2+ cancer.

Hope this helps!

--The Mods

Jada143

I was diagnosed with HER2+ in September 2015. My tumor was 7cm, just below the breast and 1 node. Will finish my chemo cocktail in a couple of weeks and on to surgery and radiation. Feeling fearful right now about recurrence. Have read about the positive results of Herceptin but one article leads to another and I agree with Annchamama4... stay off the internet, let the Meds work and do what your Dr. tells you to do. I am no sissy andplan on kicking some cancer ass

Myraknits

I really wish there was a like button on here. Thank you. I'm waiting to find out when my appt is with the oncologist and then we'll get started

Moderators

Jada143-

Welcome to BCO, and thank you so much for your supportive words! We look forward to having you as a part of our community!

The Mods

Gwright

finished my 1 year of herceptin in August 2015. Around last April I went in for a MUGA and the needle going into my vein to draw blood was excruciating pain. Then was in pre-op to have my port removed & 3 different nurses could not get the stint into my vein. Every attempt was terrble pain. I have not heard or read about this as a side effect of herceptin and my oncologist hasn't a clue. Does anyone know anything about this? I'm hoping my veins will go back to normal and I can have the port removal surgery summer 2016. I did not have chemo mixed with herceptin just herceptin alone. Any insights out there! Gabe in Florid

Moderators

Hi Gabe-

We're so sorry to hear about the issues you're having! We suggest checking the Herceptin thread in our stage iv forums, those ladies might be able to give you some insight or share a similar experience with you. Typically, the stage iv threads are reserved for stage iv members, but they're very knowledgeable and would be able to answer your questions!

The Mods

Cif

I was diagnosed Sept 2013, Mast Nov 2013, chemo and Herceptin Dec 2013 till April 2014 then continue Herceptin until Dec 2014, then put on tamoxifen for a year of 2015 and now on anastrozole as of Jan 2015. The AI has nearly made me handicapped with pain such as lost use of thumbs, toes and nausea, so yesterday they gave me Femara to try. My frustration, is during and after treatment ZERO tests were done (such as CTC or microRNA Urine tests) to determine if continued treatments were feasible or working. (CA and such tests never showed cancer even before any treatment, only the biopsy and tissue tests from mast showed the ER+/Her2+++ (two tumors one of each) stage IIB.

My post is relative to AI's below.

This link is the FACE trial to determine if letrozole (femara) or anastrozole (arimdex) is better, Figures 2 and 3 clearly to me indicate arimdex gives us a better longer DF and OS, but all the conclusions and summaries of the study in other places say no significant difference found - from my point of view there is, here is link

http://www.jbuon.com/pdfs/838-844.pdf

To complicate things, it seems but not sure because still relearning to write and read after chemo, they weed out Her2 overexpressing in the trials (I keep running into clininical trials saying welcome Her2 positive up to 2+ but not 3+, ugh).

Before switching AI's I could NOT find anything on internet that said any AI was good for a Her2 patient, and that tamoxifen exposure to a HER2 pos could be detrimental to prognosis. So I tried to find FACE trial results, I'm not sure I can digest it link below but feel conclusion is anastrozole

http://www.cancertherapyadvisor.com/sabcs-2015/breast-cancer-letrozole-anastrozole-better-survival-treatment-risk/article/458987/

Then I watched this Jan 2016 video and got impression it is admission that when comes to Her2 Pos that no medical wisdom is known and to just default to ER+ treatment:

https://www.youtube.com/watch?v=7i0diwuwxxQ

When I ask doctor what test can be given to monitor if getting mets the response was - it doesn't matter if we catch, for example, the met cancer in your liver when only 1 mm versus larger cm - the prognosis and OS is the same. The only thing to do is wait for symptoms. WHAT ????? Yep, asked three other doctors, the practice is to sit back and wait. I understand Pet scans are more dangerous than wait and see. But geez, why not a microRNA test on urine, heck, there are dogs that can sniff cancer in pee - I just don't know how to access one.

In conclusion - the practice is to take an initial best practice wack at it first time with chemo Herceptin and rads (declined rads, more dangerous for mets based on Dr. Google cancer studies). After that the impression is they are clueless, but I'm being told my problem is I don't trust the establishment and asking questions gives that impression. So anyone help me interpret these links as to whether odds better with anastrozole or letrozole. Sorry for bad writing, best do with hey dragon and other tools. They also say nobody else got brain damage from treatment and other body issues, but the her2support.org site is filled with folks just like me. My impression, we're on our own right now until another Herceptin type break through comes down the pike (thank you to patients and staff that made Herceptin possible, thank you).

Cif

gwright, goodness, between husband, self, friends in several forums and reading tons of sights, your experience is a new one. So sorry. My experience was opposite, took a few surgeries to get it in.

ACgal

I was diagnosed with hormone negative, grade 3 DCIS in December...had lumpectomy 2 weeks ago and pathology showed clear margins but HER-2 positive and micro invasion (less than 1mm) so then had sentinel lymph node biopsy last week. My surgeon was already talking about chemo and targeted therapy before the biopsy results came back showing all 4 lymph nodes are negative...I have my first app't with an oncologist in 2 days. Sent most recent pathology report ( which now shows grade 2 not 3 ) to another doctor ( director of breast oncology and a breast surgeon ) and he is saying he absolutely would not recommend chemo - only radiation. Spoke to my gynecologist today and she totally supports chemo and targeted therapy because of the HER-2 status and micro invasion.

I am totally confused - hate the thought of chemo as pre lumpectomy I was told radiation would follow and now I feel like everything has been turned upside down...so frustrated at this point but trying to come up with educated questions for the oncologist

agness

How confusing for you. I know someone else who was thrown the chemo suggestion at the 11th hour.

If you were just HR-positive then solely doing rads would be reasonable. Since they found HER2 though I think doing a course of targeted therapy with some chemo would be worthwhile. Chemo sucks but in past years HER2 early stage gals couldn't even get targeted therapies and they often developed mets. HER2 is really aggressive and targeted therapies work well against it but in almost all cases it works best doing it with a cytotoxic drug.

You can use cold caps during chemo to help save your hair and follicles -- it wasn't perfect for me but it kept the experience more anonymous and my hair filled back in sooner.

https://community.breastcancer.org/forum/6/topics/...

I hope you can figure out a good solution for yourself. When I was facing abdominal surgery years ago I found doing a meditational labyrinth really helpful in being able to get psychologically ready.

http://www.veriditas.org/guidelines

scrunchthecat

Here is an article on managing HER2 metastatic cancer. Nothing really new, but a good overview:

http://www.cancernetwork.com/oncology-journal/management-metastatic-her2-positive-breast-cancer-where-are-we-and-where-do-we-go-here?GUID=C7DCD2EE-E65E-4F07-A040-1FFD477722C2&XGUID&rememberme=1&ts=25022016

lambma

ACgal, I understand what you are going through. I was Initially diagnosed with DCIS, grade 3 and had a lumpectomy with clean margins. Then they determined it was slightly invasive (3mm) and HER2 +. I was in a grey area for Chemo because it was small. My MO was leaning toward Chemo, but there wasn't a clear answer. My MO sent all of my pathology information to Mayo Clinic for a second opinion and they definitely recommended Chemo and Herceptin. The treatments and side effects were very manageable. I was able to work throughout all of it. Someday we may learn that I was over-treated, but the more I read about HER2 +, I'm glad we took this approach. Drs. learn more every day. You need to make the best decision for you with the information available at that time. Best wishes!

JerseyGirl22

My story so far.... Age 47, Diagnosed ILC, Triple Positive, With Her2 being +++.... Did neoadjuvant chemo with TCHP and tumor shrank from near 7cm to less than 4 before surgery... still had 5 positive nodes at surgery, but clear margins for everything. BMX end of Nov. and radiation finished 3/1/16.... continuing Herceptin to finish out the year. My counts dropped so badly during chemo that I had to have a blood transfusion. Peripheral Neuropathy in fingertips, toes, and balls of feet. I felt great between last chemo and BMX, no drugs, not even pain meds needed. PN went away almost totally. Once Herceptin only started, PN came back, seems to subside a lot by the time next infusion comes around. Onc looks at me like I'm crazy, but the side effects are real; feel mildly nauseous, like I'm getting the flu, PN, fatigue, and dripping nose... I don't want to stop the Herceptin, as I know it is doing its job, but now I need to start an AI, and that comes with its own SEs... hoping for none, or at least very few... I don't want to take more meds just to combat the SEs. Before this diagnosis I was healthy and didn't take anything more than a multi-vitamin and natural supps.

RinRin

I'm a newbie, hello everyone.  I was diagnosed April 2015 with Infiltrating Ductile Carcinoma, HER2+.  Began Chemo in May and landed in the hospital from side effects right away.  Continued the chemo for 5 rounds (out of 6), had mastectomy with tissue expander in September 2015, developed   PSEUDOMONAS AERUGINOSA from the surgery, had tissue expander explanted in November 2015.  Had 33 radiation treatments and have been on Herceptin since I began chemo in May 2015.  I will be having my last Herceptin treatment in May or June this year.  I am so confused, my radiation doctor told me I have HER+ and triple negative, I don't know if that is even possible.  Still considering having other breast removed.

agness

I suggest you get a copy of your medical records and review them yourself. The pathology reports should have the information you are seeking though often oncologists will write things in their consultation notes that they didn't even discuss with you the patient I have found.

It is possible to have multiple types of breast cancer mutations at the same time, breast cancer cells can also mutate over time in response to chemo and whatever other challenges we throw at it. It is important to hit it earlier and harder so that it can't mutate if we can help it.