TRIPLE POSITIVE GROUP

PoseyGirl

When all these studies look at time to recurrence, are they "starting the clock" at diagnosis, or after surgery, or after chemo

SpecialK

I believe it is counted from the diagnosis date since that is the most constant among patients, but I think it can different depending on the study and what it is measuring. If you are looking at breast cancer and calculating from the end of treatment, those with triple negative disease would have the shortest treatment duration, and those of us with Her2+ might have the longest. If you are looking at from date of surgery, if a patient had neoadjuvent systemic treatment, their surgery date would be later than patients who had adjuvant systemic treatment, or no systemic treatment. I participated in a Her2+ vaccine study and it counted from the administration of the vaccine.

Cherry-sw

No SpeacilK, I was trying to say that although it is rare that a highly ER+ bc will have a very high Ki67 but they can be grade 3 and therefore must be responding well to chemo? The Ki67 is usually higher the higher the grade is? I have seen here on the boards profiles with ER/PR+ tumors, no node involvement, grade 3 and getting dense dose Taxotere treatment. I thought it was because their grade was high and Ki67 still high but not high enough for chemo to be effective and they receive dense doses with long intervals in order to make sure that chemo kills all the cells that divide. It actually bugs me, sometimes I think if weekly Taxol is enough.

Cherry-sw

SpecialK, I remember you mentioned about the study. Have you received any vaccine? Is there any already or are they working on it?

Cherry-sw

I cannot register at medscape for some reason and you cannot see the article without the registration

SpecialK

cherry - when I click on the Medscape article it comes up, wonder why it isn't working for you. Try Googling this "study refines breast cancer recurrence kate O'Rourke" and it should be the first hit.

The assumption is that high grade does respond better to chemo, as high grade generally indicates a higher mitotic rate, a higher Ki67%, and potentially more responsiveness to chemo. Not all oncologists give equal credence to Ki67%, and among the patients you are seeing with high grade getting Taxotere, are they Her2-? If so, I would imagine their OncotypeDx recurrence score would be what is driving the chemo decision.

Yes, I did receive vaccine injections for a year, then boosters every six months for two years, then following over the phone and with oncologist notes, but this was a Phase II trial. Among those that received the vaccine, at the time it was presented at ASCO, there were zero recurrences, not so in the placebo arm. My understanding is that for a variety of reasons, this trial is closed and they are not moving on to Phase III despite the promising results. In this trial the vaccine I received, GP2, was paired with another vaccine, AE37. Patients were sorted into the vaccine arms based on tissue typing as is done for organ transplant. The AE37 arm did not perform as well, but the vaccines were tied together in this study, and because the sorting was tissue type dependent that leaves a 50% segment of the Her2+ population not eligible for this vaccine if they continued to use that sorting criteria.

Cherry-sw

Thank you, SpecialK, I will try to find some info on this vaccine to understand why they decided no to proceed with it. Imagine a fully working vaccine that prevents recurrence, what a difference it would make.

SpecialK

cherry - this trial originated at the United States Military Cancer Institute, with the Phase I participants all military related personnel. From there the trial widened in Phase II to more locations and recruited non-military patients, but the principal investigator was still the same physician, at the USMCI. He has since retired from active duty and is now associated with the company linked below. It is possible that there may be new trials commencing with regard to GP2, and it looks like Dr. Peoples has initiated a Phase 1 trial to determine safety of combining Herceptin and concurrent GP2 administration. The biggest issue is that the trial process is so long that people currently being treated will have missed the opportunity to receive any vaccine. It will be years before this particular one comes to the market, if it does at all.

Here is some info about him:

http://www.cancerinsight.com/about-us/founder/

Neuvax is another vaccine (also being trialed by the same physician) for lower expressing (+1 and +2) Her2+ patients. Here is the trial info:

https://clinicaltrials.gov/ct2/show/NCT01570036

Here is a good summary article on vaccines:

http://www.ascopost.com/issues/april-10-2016/breast-cancer-vaccines-moving-forward-at-a-fast-clip/

deni1661

Cowgirl thanks for sharing your story and picture of Buck. You give us all hope for the future and there is much to look forward to!

Kattis, congrats on your recent ultrasound results - that is GREAT news!

Hapb - I can relate to your frustration at which meds benefit us the most and concern for the damage meds might be doing to our body. I don't have a clear understanding of all the stats and as a trial patient I sometimes question whether skipping chemo was the right thing to do. I have decided to "let go and let God" and pray none of us has a recurrence. The hair I do have is atrocious, my skin looks terrible, and I look like I haven't slept in months. Some days I look in the mirror and want to hide in my house forever. But then I say this is the path God wants me to be on and I accept how I look as being part of the journey. You are a strong person and inspiration to others as you're fighting through cancer for the 3rd time - each day is a gift and I pray you find peace and joy again.

deni1661

Hapb, I'm afraid it will take years to see what becomes using Herceptin alone but hopefully it is a step in the right direction. We are definitely in God's hands and our faith will see us through. While I may have a husband, there are many times I feel alone because he isn't able to give me the support I'm looking for. He's so busy doing his own stuff that he doesn't really pick up the slack for me. If I don't do it, it doesn't get done.

I can see the turmoil you're in that taking the meds is diminishing your quality of life and might not be worth it. Does your cancer center offer a support group or would counseling help? Its sad hearing how isolated you are and that you're going through this alone. Where do you live? I'll come over now and we'll get through this together.

deni1661

So true and a sad fact that many don't realize is another side effect of cancer. It's not just a physical disease, it is just as much an emotional disease.

PoseyGirl

It's a heavily emotional disease for all of us, single or no...I do certainly appreciate, though, that it's that much more arduous in many wayswhen you're on your own. I know of a woman (who I met through dragon boat), who is single and has battled depression her whole life. So it's incredibly hard. But I have to really hand it to her...there she was, showing up for practice twice a week. I'm so glad she did. I hope you have some dear friends who are there for you, Hapb.

We all have our burdens, for sure. I am a mum of two young children, so my terror all year was mostly surrounding that fact.

I did want to say something, though, around your comments about treatment, Hapb. It is very true that breast cancer is not yet curable. But it's not really true that there isn't proof that treatments make a difference in the majority of women. I can't agree with that, and neither do the many studies out there. They have broken down exactly how treatments have made a difference. I am thinking it was Kattis who said that for folks like us (2b or Stage 3), without treatment, our bc would likely be everywhere by now. Mine was growing at a stunning pace. I realize I can't know the longer term effects for myself, but I have had another year to raise my children. I just pray I have more. But has treatment made a difference? For me it has.

PoseyGirl

we all have our burdens, each and every one of us. I can't imagine what you go through, Hapb. And all the other ladies. We are all in this together.

I didn't know that you were looking for a 50 percent difference lol. You suggested that there is not proof that treatments make a difference for the majority of patients. I don't know the percentage difference it makes for each person, as we are all individuals. But, yes, there are studies that show - on average - the difference that each additional treatment makes percentage wise as you layer it on. Without treatment of some form, most of us would progress. So I'm suggesting there is a real and dramatic difference. Whether it is 30 or 50 percent, I don't know.

It is suggested that around 30 percent of early stage breast cancer will metasticize, and that is with treatment. My guess is that without some kind of treatment in place, a much much higher percentage would metasticize. Most her2 cancersdon't rest on their laurels.

kae_md99

like posey i have 9 year old twins ( with disabilities) to raise. i was ready to give up on cycle 3 but i was thinking of them.i could feel the tumor decreasing in size the first cycle of chemo.by the 4th cycle,the lump cannot be felt anymore.i did not get pcr but residual cells remain. so i know that chemo was somehow capable of killing majority of the cancer cells . but of course there is no way of knowing if it killed astray cells in my body. i wish i was er negative.hormone supression is hard. i was not able to tolerate the lupron and now i am on zoladex. i am afraid of the AI's... if i experience the same side effects with AI's as with the lupron, i dont think i can make it to 5 years.. heck, i dont think i can even make it to 5 days! sigh....breast cancer sucks. everybody thinks that once you are done and your hair starts to grow then you are fine. my friend asked me today if i am ready to go back to work.lol! i still have the exchange plus i am already osteopenic bordering on osteoporosis. there is no way i could go back to floor nursing which involves heavy lifting! i am also on PT for ROM btw. plus the fatigue is still an issue. i just keep my mouth shut when people make comments because they do not understand what i have been through and what i am going through....

PoseyGirl

I understand and agree that we need a cure and that it's not good enough. As a stage 3'er, trust me that I agree on that particular point . But I was disagreeing with your statement that there isn't proof that treatments make a difference for a majority of women; that statement isn't true and is not the same as saying we need a cure (which I agree with). I'm not trying to be difficult; I think it's just important to recognize things factually, as it's dangerous to forego all treatments in most cases.

So if the question is: are current treatments good enough? The answer is "no, they are not good enough until there is a cure". If the question is "does some level of treatment make a difference?", the answer is "yes". These are two different questions, that's all.

PoseyGirl

Hapb, would you be able to share some studies that show that 50 percent or more don't have a difference in disease free survival? I'm not being confrontational; I simply haven't seen anything that suggests that. If what you are indicating is true, then I'm in a much deeper kettle of fish than you are. You are saying "sad, but true". I think it's important for us to ensure we are sharing info that is most currently understood by the medical world. Please keep in mind that when you write this and follow up with saying you believe you will be fully healed, then that can frighten those of us in this thread more advanced than you are. That is why I think it's critical that we are careful about what we state here when it comes to numbers. If you believe this, I would just like to know the sources. Thanks. But to back up, I know that treatments do make a difference; I know it because the studies say so. I don't know exactly how much of a difference, no.

If you visit www.sciencebasedmedicine.org and look for the article "Rejecting Cancer Treatment: What Are The Comsequences?", you will see some pretty hard facts about survival when you compare people who chose treatment over those who didn't. Like 43 percent five year survival versus 86. That's dramatic.

I am going to retreat from the conversation now, but I felt it necessary to interject because I thinkyour statement was erroneous and possibly influential for others who may be new to all this and scared of treatment.Thanks

Cherry-sw

SpecialK, thank you, now I could see this Dutch study, through the link I just come to the registration page. I have seen this study and exactly like Posey I wonder where does the count start? After the surgery or after the treatment?

Aside from the vaccine you have participated in another trial if I remember correctly. Do you consider yourself over-treated?

About Taxotere regime, the lady I have mentioned earlier had 2 cm tumor, grade 3, no node involvement Her2- and still get adjuvant treatment with dose dense Taxotere.

SpecialK

cherry - no, I consider myself undertreated because I did not get Perjeta since it had not been approved for early stage use yet. If I was treated today I would have received it. As far as someone who is ER+ and Her2- receiving Taxotere adjuvently, their Oncotype Dx RS most likely indicated a benefit.

hapb - I think it would be useful to look at the Lancet information that contributed to the Komen chart you cited in the post above. This chart does not include treatment with taxanes, Herceptin, or aromatase inhibitors because the data gathered is pretty old, from 1985 - 2000. For purposes of making assertions about survivability I think it is important to consider the source and use information that is current. Here is the actual article:

https://www.ncbi.nlm.nih.gov/pubmed/15894097

Lita19901

Posey - Just as I don't think it is Hap's intention to scare anyone I don't think it was your intent when you shared the study about recurrence without treatment components. But from the lump of anxiety that is now lodged in my chest I know that I will be spending much of today talking myself off the roof.

Did I have a choice when I refused chemo? It didn't feel like it to me, but that doesn't mean I don't recognize the possibilities my choice/not a choice brings and it doesn't mean it was easy.

Lita19901

SpecialK - Here's a link for one of the studies that discusses the variety of survival stats for BC subtypes. Some of its tables/graphs are a little confusing as not all provide a key but matching them to the study content helps somewhat.

https://www.hindawi.com/journals/jce/2014/469251/

Also - the Predict model shows a difference in survival stats among HER2+ BC subgroups based on ER expression.

Using my specifics, age = 65; Grade = 2; Nodes = 0; Tumor size = 15 cm

(I assume K167 positive with HER2+ and K167 negative with HER2-; w = with treatment; w/out = no treatment after surgery and/or surgery with radiation)

HER2+, ER+

5 year = 91% w/out; 94% with

10 year = 78% w/out; 85% with

HER2+, ER-

5 year = 75 w/out; 86 with

10 year = 62 w/out; 75 with

HER2-, ER+

5 year = 93% w/out; 94% with

10 year = 82% w/out; 85% with

____________________

What I see here is that in the HER2+ ER- BC there are more deaths in the 1^st five years than in the second 5 years but the HER2+ ER+ BC group shows the opposite, which I believe brings into question the recurrence in the first two years information.

Interesting to note is that my survival stats are more like the HER2- ER+ subset than the HER2+ ER- subset - and, please, correct me if I'm wrong, but yours are, too.

Which means, rather amazingly, that our outcomes are more like HER2-/ER+ BC than HER2+/ER- BC! Which means we Triple Positives can breathe a little easier if we recognize that not all HER2+BC is create equal.

(I tried this for different grades, age, tumor size and node involvement and came up with similar patterns.)

Lita19901

Cherry - when was the lady who got taxotere treated?

Cherry-sw

_{Lita, she is in treatment now}

Lita19901

Cherry - darn. I was hoping that was the reason for the treatment difference which might have helped you put your mind at rest.

PoseyGirl

Hapb,

If the study is old and innacurate, then yup - that needs to be accounted for. My guess, though, is that newer data would not reveal a smaller gap in survivorship when comparing treated versus untreated arms.

Above aside, I want to clarify that there was only ONE thing I was debating, and that was your statement that for the majority of women, treatment doesn't make much difference. This is the only thing I debate and disageee with. Later, you put out the number 50 percent or more diffierence which I then took to mean as your own personal definition of "much difference". If that is your definition, then you're correct most likely. But that was not defined in your original post - the post I was responding to. I have a different definition of "much difference", and I'm guessing we all do. Over the last several posts, you've explained further that what you meant is that we need the cure and that until then, nothing is good enough. Amen to that; I am of course 100 percent with you.

Lita, on the anxiety and fear front, I perhaps didn't clarify myself properly and I'm sorry for that. I would never expect anyone to withhold a thought or a link in this free forum; we are all part of the same special "club" and should ask or state what is on our minds. Any anxiety I feel from any post (and like you, I have felt that lump form many times here) is NOT on anyone but me. I know for sure Hapb wasn't trying to create anxiety. And of course I never would wish to do that with any post. What I meant regarding that part of my post is that if we make bold statements like "for the majority of women, treatment doesn't make much difference" without parameters, definitions as to what they mean and links to studies, we run the risk of people reading that in a certain way and it could hold significant sway in terms of decision making and, yes, extra anxiety that could affect those decisions.

I am not familiar with your treatment path, Lita, and will never judge anyone for treatments taken or treatments declined. I believe everyone here makes very well informed decisions based on our very unique scenarios. And Hapb, I have never thought you weren't science based in your thinking; I totally get your struggle on cost versus benefit. I was just objecting to one comment made which I don't agree with, but we both now know more of what eachother is thinking when it comes to the discussion of what a treatment difference means to each.

Healthy debate and discussion furthers conversations and understanding, so please know that I find this positive and respect everyone and their intentions on this board!

Cherry-sw

SpecialK, I wish more treatments were available for all of us now. These clinical trials take so long before any med gets approval.

SpecialK

lita - I am hoping your tumor size is 15mm, not cm? Ki67% is a proliferation marker, you can have a high Ki67% with Her2-, it is similar to a mitotic rate measurement. As far as the time period of recurrence danger, the general thinking is this - both ER+/Her2+ and triple negative, or ER- with either Her2- or + are thought to have earlier recurrence rate danger. With ER+/Her2+ the early recurrence is thought to be driven by the Her2+ piece, and with TN or ER-/Her2+, early recurrence is further compounded by the lack of adjuvant therapy available for ER-. For those who are ER+ with any arrangement of Her2 status, the recurrence risk is thought to linger later because of the ER+ aspect. The recurrence is thought to be driven not by the Her2+, but by the ER+, and potentially affected by discontinuation of anti-hormonal meds at 5 years, or by resistance to those meds developed in the previous 5 years. If I put my numbers into Predict 2.0, the margin of benefit for adjuvant treatment grows in the second 5 year period. If I leave everything else the same and change myself to ER- and Her2-, my first five years has only a slightly lower survival stat, but the treatment benefit margin is smaller in the second five years than if I am TP. In the second 5 years, more people with ER+/Her2+ and the rest of my stats would die if untreated, then if I were TN and untreated. The numbers are similar for me if I manipulate the Her2 status, but because of my other clinical features they are just similarly bad. With my stats Her2+ untreated less than 40% survive at 10 years, with Her2- untreated just under 50% survive. At 5 years, there are 7 additional who survive without treatment if they are Her2-, the treated co-hort is a very close number regardless of Her2 status.

Lita19901

SpecialK - But it is interesting that there is more difference - for multiple combinations of BC factors - there is more difference within the HER2+ group than between the Her2- and HER2+groups, which speaks to the heterogeneous nature of HER2+ BC regarding outcomes.

Several recent studies suggest that Triple Positives with high ER expression have better outcomes than other HER2+ BC.This I see a good thing for many of us on this forum but I'm not sure this is recognized. I see it as something to keep in one's self-calming arsenal.

SpecialK

lita - yes, it speaks to the complicated nature of the umbrella term "breast cancer", which is really many different diseases with diverse components. I am one who is highly ER+, 96%, and highly Her2+, a 3+, but I have low PR positivity, single digits on one report - which is a poorer prognosis than if my PR was higher. In some classifications, based on that one pathology report, I would be considered PR- since I am less than 10%. I think the advent of more genomic assays that include testing Her2+ patients is a good thing and will help understanding of the complex array of stats within the subtype, and help refine treatment parameters. I think it would be a comfort for many Her2+ patients if genomic testing for us was as commonly done as Oncotype Dx is for ER+/Her2-. Interestingly, I meet some of the criteria for a Luminal B type Her2+ patient, but on Mammaprint I am solidly ERBB2. Is the study info you are seeing that shows better outcomes for TPs that have higher ER+ indicating which aspect of treatment is providing the most benefit?

Lita19901

KB870 - Here's a link to a study (using those ubiquitous mice!) that addresses the role of PR in BC.

http://scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-positive-women-do-better/

Kattis894

Lita I am with you for sure and thinking about being highly positive on all calibers I am holding on to the thought treatment will be highly effective for my type. We are all individual and treatment is getting more and more individual depending on all the variables. When my onc checked the predict survival calculator, as he showed me, I am at 80% chance for survival. I am holding on to that even thought I am sure I could be in the 20% as well. He also explain what Special K is mentioning that HER+ is crucial for recurrence the first few years, stating I have gone threw the first year and now I am on my second crucial year...:( ER+ is looking at recurrences further down so unfortunately the recurrence can happen further down the line as well, therefore the hormon treatment. I am clinging to the thought I will make it threw this but as science have no answers I do not either. There are cases of all sorts, one large even metastatic cancer can be pushed back and some not. Why. We do not know. I guess living day by day is the best option, not looking so deep into ones future, it will only make you go completely crazy. I am praying for more effective treatments in the near future and would love to be in a trial for recurrences but have not found one in my area so far. At least this way you are constantly checked and will be more mentally prepared.

Started my job today, completely exhausted, I have to learn so many new things and find it a bit hard to keep it all in my head...I am weak...but figure one day at a time. I am not a "spring chicken"...and learning PC instead of Mac is a bit confusing to say the least. I wanted to throw the computer out the window mid day...:) I am praying every day I will be ok for at least another 6 months, hoping I can keep this on the back burner for awhile. Drinking green juices every day and trying to take long walks. My body is aching and I feel very stiff but figured I can get threw it. Not for a minute I would dare to stop taking my hormons due to bi-effects. I actually rather be in a wheelchair at this point. Just doing self exams once a month freaks me out.

Hopefully more treatments will come forward in case I get hit again, if not I guess I will go into another battle hoping I can survive a bit longer...I am planning for the worst, getting my testament, acceptance in order but hoping for the best. Keeping hope is extremely important and the last that leaves perhaps. I have witnessed 2 family members succumb to cancer (not breast) and when that time comes it comes, but it is not coming tomorrow morning for me so I will go to work in the morning hoping for the best as I will do the next day and next. Being hit by this illness puts you in a complete panic in the beginning but it gets better over time as you realise I am still alive. I pray for a cure and as I am not a scientist I can not do so much about it. I have promised myself not to look back and regret any treatments I have had, in fact I have promised not to regret anything.

As this week passes I have decided to figure out some kind of exercise I can do to get stronger and I am still looking into a better diet but confused about it.