TRIPLE POSITIVE GROUP
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Hi Cowgirl, thank you for jumping back into the forum and for offering your positive voice; you totally know from personal experience how it helps. Your story of Buck and yourself is so special; look at that lovely face. He was definitely your angel sent to you
.SpecialK, thanks for explaining this further. As my oncologist didn't seem to offer any confident kind of recommendation regarding hormonal therapy (and I was 47 when diagnosed, so heavily into perimenopause when all this happened), I read a bit and came to the conclusion that for me and my age and subtype, AI was the route to go (I too read that AI seemed to be more powerful). And, like you say, things are still so complex or not yet understood. I believe 100% that they WILL be understood. What we see as no rhyme nor reason probably does come down to reason. Just reason we don't yet understand.
Here are a couple links I alluded to before which I find interesting and somewhat inspiring in the sense that it makes me think that they (the research community) is working hard at drilling things down much further to understand more and therefore treat better, and ultimately - to cure.
First, Cowgirl, I just saw this and it's perfect timing with your post
http://www.express.co.uk/life-style/health/856461/...
So this is for triple negative women, but here is something they are working on:
http://www.dailymail.co.uk/health/article-4911682/...
This Boston Glob article speaks to the history, present and future of breast cancer research. It sort of touches on what I was talking about in an earlier post about how innovation will become exponential in BC research:
http://sponsored.bostonglobe.com/american-cancer-s...https://www.economist.com/news/leaders/21728893-science-will-win-technical-battle-against-cancer-only-half-fight-closing
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No, it is not the Herceptin, it is the Her2+ itself. It is the communication between the ER+ and Her+ that makes the medications less effective not the medications themselves, but this is not universal - otherwise we would all eventually succumb to the cancer, which does not happen. Also, tumors are not homogenous - some parts of tumors may contain more ER/PR receptors, or Her2 overexpression, than other parts. Your percentages of receptors and amount of Her2 overexpression is listed based on the slide that was looked at under the microscope, and in your case there was enough to deem you "positive" for both ER and Her2. 10 different slides might contain differing numbers of receptors or levels of Her2, but you would still be considered positive based on enough slides that did. Determining degree of each is the only current way to know whether certain therapies are appropriate - in other words, are you Her2+ and are you ER+ and should we administer these known medications that are beneficial for the majority with these known attributes.
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Thank you SpecialK, I understand that this is about Her2 and ER but this cross-talk does it mean that the meds will be less effective?
What I am still trying to understand is a time frame for the Herceptin and Tamoxifen working. The tumors are heterogeneous, some cells are ER+ some PR+, the same about Her2, some of them have over-expression and some of them do not. When they start the systemic treatment Herceptin is working on binding Her2 meanwhile chemo kills all dividing cells. Anything that is left is suppressed by Tamoxifen. Those cells that had no ER/PR+ or Her2, hopefully chemo kills them. If the tumor comes back soon it means Herceptin and chemo failed to do their job, if it comes back later it means the hormonal suppression did not work.
Herceptin is given during the first year and if it is successful it has to kill all the cells with Her2, hasn't it? Because if it does't then it is exactly as you said we all have to succumb to cancer. If any Her2 is left after Herceptin then it will come back or?
Sorry if I am asking stupid questions, I am just trying to understand.
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cherry - yes, it can mean that but I believe it is more the case of the Her2+ aspect potentially making endocrine medicines less effective. Herceptin, usually if taken long term by more advanced cases of Her2+ breast cancer, becoming less effective due to resistance, but I am not sure this is as connected to the ER aspect. So this is actually two separate issues. Of course, there are also early stage patients for whom neither medicine works, or one or the other, for whatever reason progress. Your example, if I am understanding you correctly, is that Herceptin is working on some cells and anti-hormonals working on others. The problem is that Her2+ and ER+ exist on the same cells - it may not be an either/or problem. None of us knows which aspect, the Her2+ or the ER+, is driving the proliferation of our cancer - so we can't assume which treatment is controlling it, and controlling it in which timeframe. Also, chemo is thought to be less effective on highly ER+ cancers, so I am not sure there is any way to know which cells, or aspects of cells, the chemotherapeutic agents are killing. Generally Her2+ cancers, if they are going to recur, come back within the first couple of years, and a later recurrence is driven more by ER+, however there are those patients who recur later who are still Her2+, so there is a lot we don't yet know about this.
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Thank you Special K for this explanation. My onc did tell me that even though I was not CpR most likely the letrozol will take care of the rest considering being 100% ER+. Interesting to know chemo might be less effective for me. The doctor seem to think the Ki65 percentage is a more valuable tool, not completely sure why, but understand it is a measurement how fast the cells are dividing. I wish it was 0% but understand 6% is considered very low, I was 30% before operation so it went down a lot.
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Catching up after a few days offline; I'd like to jump in on the anxiety question Cherry posed.
First, Cherry, I'm so glad you sought help with your therapist. Your medical team is there to support you! The low dose antidepressant made a world of difference for me. I don't see it as a failure at all, it allows me to be calmer and more like myself.
During chemo I found relief from going on daily walks - the sunshine and movement have magical properties. Now that chemo is finished, I'm also back to cooking which I really enjoy. Great to hear how others manage their anxiety. Hope you find something that works for you!
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Thank you SpecialK, you are right and even Her2 positive cancer still can recur years later. But why do highly ER positive cancers are not receptive to chemo? I thought that high cell proliferation and grade and high Ki67 is a given for chemo, because it is only effective on dividing cells. I even red in an scientific article about how Taxol works that it can get into a dormant cell and wait there for days meanwhile the rest of it is washed out of the system. When the cell starts dividing it damages its DNA and it can no longer replicate itself properly. I mean I am both ER+ and have high Ki67, the latter does actually bother me a lot.
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SpecialK - from recent studies I've been reading, HER2+ BC is too heterogeneous to say that they normally recur in two years. That may be true when all HER2+ BC are grouped together but not true for some of the subtypes of HER2+ BC. Granted, as you say, it is impossible to know your subtype precisely, at least not at this moment in time, and that there are exceptions is a given.
It's frustrating to know that data is out there from major studies but is not being tapped into. For example, results from the HERA trial was published in 2005. It wasn't until 2016 - 11 years later - that data was pulled from the HERA trial that showed a difference in response to Herceptin based on HER2 ratio and ER positivity. Had this been considered at the time we might now be in a very different place in BC treatment. All that would have been involved was a re-sort of a spread sheet.
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T-Sue, thank you for your concern, I really appreciate it. This is my fourth day on this medication and I am also taking an anti-anxiety drug with it. It is too soon to tell but I hope I will feel better compared to the mess I was last week. I really wanted to be able to handle it myself but I couldn't obviously. I am grateful for this forum, because it definitely did not fell as a failure when I know that I am not alone who ended up with anti-depressive.
I am also trying to go for a walk almost every day and I have always been into cooking. In case anyone is interested in sharing of their favorite recipe it will be a nice intermezzo. Not that we cannot find a topic to discuss, this group has most interesting discussions. I am also following So whats for dinner.
I never tried to make a real chili except for chili con carne variation where you basically add beans to a ragu bolognese, but a real spicy chili you in US eat in a cup like a thick soup. I would like to try one, vegetarian, with meat or chicken.
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Lita 19901, HERA trial that showed a difference in response to Herceptin based on HER2 ratio and ER positivity? Is it what we discussed a couple of weeks ago that high over-expression of Her2 responds better to Herceptin meanwhile ER+ respond less?
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Cherry, yes, the same study, but it is the *combination* of the ER+ and low HER 2 ratio factors that applies here rather than individual factors.
Here's the link:
http://www.breastcancer.org/research-news/her2-pos-bc-no-herceptin-response
I had an interesting conversation with a doctor who is doing HER2+ research about this. His take is that, based on this and some of their ongoing internal studies, it is possible that the reason this combo isn't responding to Herceptin is because it's not needed - because they're not really HER2 positive. It's a long shot at this point but still interesting.
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Cherry, your K65 percentage might also go down a lot during treatment as mine did so perhaps not something you need to worry about at this stage just going threw treatment...
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Kattis, I have adjuvant treatment, they have removed the tumor, so there is no way to know. My question to the oncologist was whether the cells when and if they break free and travel have the same Ki67 as they have in tumor? She asked me what I was working with, when I said procurement she looked a bit puzzled.
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cherry - I think you are assuming in your question that high grade, high Ki67% is specifically linked to level of ER+, but I don't know if that analogy can be made. You can have a highly ER+ tumor that is still low grade and has a low Ki67%, and will respond well to anti-hormonal therapy but maybe not chemo, such as Luminal A breast cancers. It is certainly not universal that all highly ER+ tumors respond poorly to chemo, but in our cases as triple positives it is difficult to now which aspect of systemic treatment keeps us recurrence free. Most ER- tumors are high grade and have a high Ki67%, so they would not fit the analogy that these features follow ER positivity, as an absolute. As per the conversation above, it may be the Her2+ aspect of your cancer that was driving the grade and Ki67% - there is no way to know.
Here is a graphic that shows some study info on recurrence rates by arrangement of hormonal receptors and Her2 status:
lita - do you have the link for what you are seeing in studies on Her2+ recurrence? Also, I am curious about the HERA info you mentioned - my understanding of HERA was it was looking at length of time on Herceptin - 1 year or 2, was it further quantified beyond that to include information regarding other parameters?
Edited to add - lita, I now see the HERA link above, missed it! Thanks!
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When all these studies look at time to recurrence, are they "starting the clock" at diagnosis, or after surgery, or after chemo
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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.
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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.
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SpecialK, I remember you mentioned about the study. Have you received any vaccine? Is there any already or are they working on it?
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I cannot register at medscape for some reason and you cannot see the article without the registration
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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.
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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.
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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/
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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.
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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.
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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.0
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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.
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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.
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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....
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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.
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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
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