Why do I read posts saying hercept not working

linn65 · 07-18-2013, 05:29 PM

But then I read the signature and they are still on herceptin with something else? I am confused?

'lizbeth · 07-18-2013, 07:44 PM

Herceptin does not work for every patient. This is why research continues on the Her2 targeted treatments. Newer drugs include Tykerb, Perjeta and Kadcyla that also target Her2.

Your Herceptin should be working. Stop worrying!

Lani · 07-19-2013, 01:12 AM

It often seems that posts can be inaccurate (noone is being graded here and there are no pop-quizzes, just people trying to help one another!)...by saying herceptin is not working they may mean that monotherapy herceptin is no longer able to keep them NED, that they need to add something to it.

Cancer is like a puppy dog that wants to get out of the house to chase the squirrels. Herceptin is like locking the front door. They puppy may learn it is possible to get out to play with the squirrels by going out the backdoor instead (eg, using her3, EGFR, IGFR, ER, etc paths to escape the blockade of the her2 pathway). Giving chemo is often like accelerating the aging of the puppy. It gets taller and able to jump on the dresser and jump out the window!!

For Stage IVs, it is usually just a question of what they will add next to herceptin if monotherapy is inssufficient to keep it from progressing(like which window/door to close in addition in the case of the puppy)

Hope this helps!

Lani · 07-19-2013, 01:42 AM

Upon reading your other posts it seems you are an early breast cancer survivor, not a Stage IV.

You seem to be hounded by the thought that herceptin may not have taken care of your cancer, that it may return. That is possible, but the good news is, that , with herceptin, your chance of recurring is now LESS than if you had not been her2+ to begin with!

Count your blessings.

I personally believe that testing for residual cancer cells in the bone marrow might be the secret to telling who is going to recur (cancer stem cell "hypothesis") and that treating with different combos until those disseminated tumor cells in the marrow dissapear might prove the trick!

Until and IF that becomes the standard of care, the guidelines do not even include any additional scanning....just waiting to see if you get mets in your lungs or liver or brain or a bone hurts or breaks.

Until we determine whether finding these things early makes a difference-- when looked at in ALL TYPES OF BC lumped together they didn't-- in prognosis, the guidelines won't be changed. Something we should all try to motivate scientists to study is whether catching her2+ bc while there is only one or a few small bone, liver, brain etc mets and treating the met with surgery, radiation, embolization, SRS etc prolongs life/leads to some cures.

Ellie F · 07-19-2013, 03:50 AM

Hi Lani
Am I understanding this right? If the bone marrow is clear do you believe that means all residual cancer cells have been destroyed? As bone marrow sampling takes only a small amount could the cells be hiding somewhere else or is that unlikely? Your point about eradicating small amounts of mets is interesting. My friend had stage 4 bowel cancer 8 years ago with mets in his liver. He had a large part of his liver removed and remains NED today.i think it's still unclear if this also works for bc?

Ellie

linn65 · 07-19-2013, 07:17 AM

Lani,

That was a PERFECT DUMMY DOWN analogy with the puppy!! Now, I understand what you mean. Thank you.

This is all VERY interesting to me, and I really enjoy learning about the science of it all. Also, it helps me feel better to have a real understanding.

I remember when I first woke up from surgery in recovery. I asked the Doctor how many lymph nodes did you take out. He looked at me and said I don't know four or five now lay back and rest and don't worry. LOL. Then I got my path back and it said 8, and I thought how did he not even know how many lymph nodes!! I have always been one to ask lots of questions my entire life and sometimes people get frustrated by it. I am a curious person, enjoy learning, and with BC the more educated I am on it the better. I believe you are your own best patient advocate. I know other BC patients don't want to know and thats okay too to each there own.

linn65 · 07-19-2013, 07:19 AM

I find it totally fascinating that my Doctor did pre-adjunct chemo with the cancer I had, and it surprises me so many on this board have a masectomy/reconstruction and then chemo. I don't see many getting chemo first, and I wonder why that too....

linn65 · 07-19-2013, 07:27 AM

Lani,

Another question is regarding this statement......Giving chemo is often like accelerating the aging of the puppy. It gets taller and able to jump on the dresser and jump out the window!!

We are wanting the puppy to grow and jump out the window right??? You lost me a bit with that part of the analogy, and I am not sure of the meaning.

BonnieR · 07-19-2013, 08:06 AM

Linn, you have a lot of questions and that is a good thing but don't make yourself crazy either! Write them all down and ask your doctor
But I will try to respond to a few in laymans terms. I learned that when lymph nodes are removed, sometimes a few extra go along for the ride! They kinda clump together. I had a sentinel node done but it was not alone. So that's probably why doc wasn't sure. He doesnt count each little node. pathology report is more precise
It seems that often chemo precedes surgery these days. I hear about it very often. Remember you are reading posts from some of us who are several years out. Things have changed in even that short a time
Try not to do too much second guessing. Stay in the present. Keep the faith

linn65 · 07-19-2013, 09:36 AM

LOL, Bonnie I already am crazy and this cancer just made it worse!!

I love, love, love that I can ask away on this forum and no one gets upset and its from Women all over the US. Social Media has its pros and cons but in this aspect it is definately a pro.

I did read about lymph nodes and looked at pictures after the fact. I was amazed what lymph nodes looked like which made the surgery even more fascinating and how they ever could come up with a way to count them. Man, we have came along way! My surgeon said in the beginning you got this at the "Right" time if you were to get it. Again, at the time it didn't fully digest but it does now.

At times when I write a question, concern, thought or anything it is hard to grasp my full meaning because writing doesn't show my inflection. I have asked questions out of worry but now that I am feeling better it comes from pure curiosty its like the more I learn the more I want to learn and understand. When I vent about my emotions this is a place for me to come and get feed back/validation that I am okay, and I am NOT CRAZY!! That term is over used! LOL

Bonnie, I keep looking for new people and the treatment path they had and so far it does seem very rare but that being said I think it is a common sense type of way to do it as well. My sister said I would have that out (meaning tumor's) right now, and I would not want that cancer in my body!!! Me on the other hand thought after a two hour consultation, 2nd opinion that his treatment plan made sense. He told me it was a partnership and I didn't know if I would like him and he didn't know if he would like me but this was doable. The only reason I didn't want to do the 2nd opinion was 83 miles from home and that was the ONLY reason. My cousin asked me if it was your son what would you do???? I said I would take him to Indy and she said why wouldn't you do the same for yourself. Light bulb went off, and I said you are right. I went with him and Monday morning canceled my surgery that was to be done Wednesday. I have never regretted that decision, and I still believe it was the best for ME.

Now, I want to learn and be the best patient advocate for me I can and if someone reads any of this along the way then it is paid forward as well.

I am working on staying in the present and working really hard at my future and what to do with it because I am clueless what to do with that, but I know it means more now in thinking about it then it used too!!!

'lizbeth · 07-19-2013, 04:49 PM

Lani,

Linn65 did neoadjuvant chemo and was concerned about the 2nd pathology. I really do believe her Herceptin is working because the ER+ numbers increased from 30 to 73. Therefore seeking another pathway.

Dennis Slamon said Herceptin doesn't work for every patient based on the original clinical trials for the "Her2 antibody". They didn't know about the "pathways" yet.

Perhaps it is a bit vague, but I'm sorry - is there proof that Herceptin works for everyone because this would be new information that contradicts earlier research.

Bonnie, Linn65 has the most experienced oncologist in Indiana. Boy is he going to get an earful of questions on the next visit!

Jackie07 · 07-19-2013, 08:33 PM

Neoadjuvant therapy had been discussed on the board since at least 7 years ago. I remember one of the advantages is that the oncologists can monitor the reaction of the cancer cells to the drug combo. Below is the link to the abstract of a new article that mentioned the practice.

<http://www.ncbi.nlm.nih.gov/pubmed/23861693>

Clin Dev Immunol. 2013;2013:785317. doi: 10.1155/2013/785317. Epub 2013 Jun 3.
New insights into the role of the immune microenvironment in breast carcinoma.
de la Cruz-Merino L, Barco-SÃ¡nchez A, Henao Carrasco F, Nogales FernÃ¡ndez E, Vallejo BenÃ*tez A, Brugal Molina J, MartÃ*nez Peinado A, Grueso LÃ³pez A, Ruiz Borrego M, Codes Manuel de Villena M, SÃ¡nchez-Margalet V, Nieto-GarcÃ*a A, Alba Conejo E, Casares Lagar N, IbÃ¡Ã±ez MartÃ*nez J.
Source
Clinical Oncology Department, Hospital Universitario Virgen Macarena, Avenida Dr. Fedriani s/n, 41009 Sevilla, Spain.
Abstract
Recently, immune edition has been recognized as a new hallmark of cancer. In this respect, some clinical trials in breast cancer have reported imppressive outcomes related to laboratory immune findings, especially in the neoadjuvant and metastatic setting. Infiltration by tumor infiltrating lymphocytes (TIL) and their subtypes, tumor-associated macrophages (TAM) and myeloid-derived suppressive cells (MDSC) seem bona fide prognostic and even predictive biomarkers, that will eventually be incorporated into diagnostic and therapeutic algorithms of breast cancer. In addition, the complex interaction of costimulatory and coinhibitory molecules on the immune synapse and the different signals that they may exert represent another exciting field to explore. In this review we try to summarize and elucidate these new concepts and knowledge from a translational perspective focusing on breast cancer, paying special attention to those aspects that might have more significance in clinical practice and could be useful to design successful therapeutic strategies in the future

Lani · 07-20-2013, 01:53 AM

AM travelling tomorrow and packing tonight, but let me try to answer a few questions.
NO--we don't want the puppy to get out. Chemotherapy is like carpet bombing (targetted therapy with monoclonal antibodies is like using smart-bombs) but both, but particulary chemo act like weedkiller. Once one clonal group of cancer cells is killed by the treatment another group (like a weed) has no competition for nourishment and grows even more. That is like making the puppy grow taller faster.

Neoadjuvant therapy is usually only given if the tumor is big enough to follow its shrinkage with serial imaging--those who are Stage I do not qualify.

and 'lizbeth--no Herceptin does not work for everyone who is her2 amplified.

There are both de novo resistant tumors and tumors that acquire resistance with treatment ie, seek another pathway. I was referring to the latter mostly.

An example of the former are tumors with a truncated form of her2 that herceptin does not bind. These should be sensitive to Lapatinib , other examples might be a her2 that herceptin doesn't bind to easily and these may be sensitive to pertuzumab. There may also be some tumors so coated with Muc1 a gooey mucinous substance that the herceptin can't get to the her2 receptor. I am sure there are more examples of de novo resistance.

Back to packing for now.

linn65 · 07-20-2013, 11:01 AM

Lani,

If I am understanding you correctly than the reason for my ER+ 30 per my core biopsy vs ER+ 73 masectomy biopsy would mean the herceptin is doing its job in killing the HER2+++ (does That mean amplified). However, that pesky ER weed starting growing due to lack of competion, right? Now, the tamoxifen is the treatment for ER+ and that is why women later choose to remove their ovaries???

It seems basically doing neo adjunctive therapy gives a baseline of how your cancer will respond. Then, after surgery the more precise biopsy, can help a person learn what might work best?

What is serial imaging? And when you speak of pathways what does that mean? Does it mean cancer isn't growing this way due to treatment so it tries to find another pathway to grow?

Who needs packing just throw some clothes in that suit case this is much more interesting.��

'lizbeth · 07-20-2013, 12:08 PM

Linn65, I'm going to let Lani answer these questions. I'm on vacation and am going outside to play.

linn65 · 07-20-2013, 12:34 PM

Lizbeth....first, you have a lot of licenses, degrees, certificates, ��

Second, I see you had 3 positive lymph nods and didn't have radiation and that just jumped out at me like a cat on a hot tin roof! Wth. Lol. I don't believe that's standard....haha

suzan w · 07-20-2013, 07:39 PM

Just to chime in...I did opt for a bilateral mastectomy due to the nature of invasive lobular carcinoma. The reason I had my ovaries removed was a BRCA 2 + test result. You didn't mention what type of bc you have, or the stage.

linn65 · 07-20-2013, 08:26 PM

Suzan, I just added that in signature I didn't realize I didn't say what type of cancer I had. IDC. And Dr. Schmidt said he doesn't believe in staging and he was the first BC doctor in the state of Indiana. I did read later when you have pre-adjunctive chemo you can't stage it anymore either. I can't remember where I read that, but I believe I did. But ONC said most likely stage 3 because I asked and all my visits he just wanted to know what I was doing for fun.

'lizbeth · 07-20-2013, 09:18 PM

Linn65,

At the time of my diagnosis, radiation was recommended for 1 to 3 positive nodes, and required as part of standard of care for 4+ positive nodes.

I opted out of radiation because I had an immediate reconstruction with a TRAM flap and was having challenges with necrosis and a partial loss. And my acupuncturist said she could fix the damage from chemo and surgery, but not radiation.

The extent of cancer in my nodes wasn't as extensive as yours, small mets, not encapsulated.

I didn't want to list everything. I'm an over achiever, lol, or so they told me at my last school.

SoCalGal · 07-20-2013, 11:54 PM

Gosh, ladies, I just learn something new every time I log on. For instance, I never knew that Lani was a dog lover! (Rocky will be thrilled).

Linn--looks like you are doing everything you can for now, western medicine-wise. Have you made any other changes in diet, exercise, lifestyle? Many women add in a variety of changes to optimize their immune system (vitamins, eating healthier, etc). I for one, think exercise is one of the MOST important things we can do to boost our health.

Just wanted to mention a more holistic approach to health and well-being!