"This multicenter analysis assessed the frequency and prognostic value of low HER2 expression in patients with metastatic triple-negative breast cancer (TNBC). The results showed that approximately one-third of these patients had HER2-low tumors, and similar frequencies of HER2-low tumors were observed in metastases and primary tumors. There was no statistically significant difference in overall survival outcomes between patients with HER2-low TNBC and those with HER2-0 TNBC."
"In this cohort of patients with metastatic TNBC, there was no significant impact of low HER2 expression on overall survival outcomes."
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Hazelgreen
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I regret to say that you are right, Chris. Triple negative is the worst of the three main versions of IDC (invasive ductal carcinomas) in terms of its course. People like me with ER+HER2- tend to survive longer. Cindy
I was classified as HER2 negative, until they came out with this HER2 low classification. I checked and my negative is not zero.
My ctDNA is low. I have one mutation (this is from FoundationOne) that has unknown clinical significance (it may either reduce or increase the reproduction of cancer; it has no associated treatments or clinical trials). I don't see a reading on ER or progesterone or HER2 in FoundationOne, only in the original tumor biopsy. -- I asked for FoundationOne liquid biopsy when I developed resistance to my second line of treatment, after 3 years, and wondered if my cancer had mutated and maybe a change in Rx was in order, but there was nothing useful there; I wasn't ESR1, which I speculated...
Original tumor biopsy in 2019 showed ER+, progesterone receptor negative, and HER2 +1, explained as "Weak, faint and barely perceptible staining in greater than 10% of the invasive tumor cells." So I guess it is low, but sounds like a minor low.
So what am I doing? Asking you for diagnosis/prognosis? I probably should ask my oncologist! You seem more informative and up-to-date than she does, although the latter impression is probably due to her poor communication, rather than actual ignorance
The difference between me and your presumably busy oncologist is that I am a retired psychologist who likes to read and rely on research findings rather than practice guidelines. Also, I have extensive MBC, and am motivated to know more about my likely path. Of course, I cannot diagnose or prescribe, and I don't pretend to do so.
All that being said, with your positive ER, you are not classified as triple negative (as you undoubtedly know). Given the range of ages that develop breast cancer, research indicates that triple negative has the shortest average length of survivial. Next to that is HER-2+ which you also don't seem to have. I assume that you and I have much the same diagnosis as my PR is also negative. Right or wrongly, I consider myself as having the most benign of the IDCs.
We older folk mostly seem to live longer with cancer than younger folk. I keep thinking that the reason for this is that all our physical activity is slowed down. That may be a positive as far as cancer is concerned. However, I also think that our bodies cannot tolerate harsher treatments, and some oncologists still seem fond of prescribing chemotherapy which kills other cells as well as cancer cells. I am determined to avoid having that happen. Because of my liver mets , my oncologist did think of prescribing Piqray, but, fortunately, my liver enzymes seem to stay in the normal range so there seems to be no need, and he's not mentioned it again (he may realize that I would refuse to take it). The liver biopsy did show an mutation
I don't recall if you said how extensive your mets are. I now feel fortunate that mine are "only" in my lungs, skeleton, liver, spleen, lymph nodes and skin. I think I would feel far worse if I had mets in my stomach or brain, etc. I've now been on my current treatment (600 mg ribociclib & letrozole) for over a year. So far, my mets are stable, and my cancer markers have reached the normal range (I put myself on a 5 days on, 2 days off schedule). I don't like the side effects of treatment so I'm going to try lowering the amounts after I see the results of my CT scan tomorrow.
What is our prognosis? Who knows? In my case, I think I'm more likely to die from a heart attack (like my mother did) than cancer per se. I'm now 77, and have outlasted my sainted mother by 17 years. However, other than slowing down in general, I'm doing okay so like to think I still have time to see the rest of the world, et cetera.
I misread your original post! That was a comparison of triple negative with HER2 low and triple negative with HER2 zero. So it was all triple negative. Somehow I read that as meaning that HER2 low was as bad as triple negative. That sent me into a nose dive into my biopsy results and a waste of your time.
I am 75 (and a half!). Have few mets and periods of NEAD. My cancer is "indolent." Yes, everything slows down, including cell reproduction. My mother lived to 98. I don't want that, and given mbc, don't expect it. My tumor markers were normal, then bounced up (never super high) so switched treatment, back to normal, but they are creeping up again. I am due for a scan, I think.
I am curious about your reducing the dosage. You mean the ribo, don't you? I don't think they reduce the letrozole. Tiny pill, one strength. My hips hurt like h... on letrozole, so switched to anastrazole. The side effects are really compromising my QoL, but I think there is no reducing that, either. Ibrance seems to be just as effective on a much lower dose. I reduced Verzenio to the lowest possible, and now have minimal side effects. How would you reduce letrozole? Take it every other day? When I switched from letrozole to anastrozole, I had a month off. It took all that time to feel good again. To stop hurting.
I do mean that I'll reduce the ribociclib further (it is reduced by 4.76% when on the 5 days on/ 2 days off schedule). I'm thinking of going to 400 mg one day each week (a further 6.67% reduction).
However, there's a series of papers I don't really understand which discuss possible mathematical models to avoid treatment resistance. The idea is that our cancer tumours contain both treatment sensitive and treatment resistant cells. When we take the maximum dosage of a medication, we are likely killing more of the sensitive cells compared to the resistant cells so ultimately, if we continue on the maximum dosage, we may only have resistant cells cells left (assuming that the tumour is not completely eliminated).
As far as I know, my current meds only keep my tumours stable. They are not being eliminated so their resistant cells are not being reduced, and may be increasing...
I also would like to lessen the side effects of my treatment regime. I too don't like the joint issues I have with letrozole so would like to consider its reduction as well...
Fascinating. There is so much to learn! I would like to look at the treatment sensitive vs. treatment resistant cells. I think -- not sure -- that I might have gotten to the point with my oncologist that I can bring her an article I don't quite understand and she will respond -- maybe in one sentence. There is a nurse practitioner in the practice who says she counts on me to bring her new info. Maybe not quite that extreme, but I saw her at my last oncology appointment instead of the oncologist, and she said she always likes talking to me because I have something new...I get more explanation from her.
Hmm. Max dose always seems like a bad idea to me. I was on the max dose of Ibrance for 2 years and tolerated it well. I believe it eliminated the tumors. That, or the fulvestrant did. My oncologist never says outright that I am NEAD, but it is clear in the radiology reports from my PET/CT scans that I have been exactly that, twice. I think I can tell in my body: I feel so good at those times. So that would seem to mean the resistant cells were eliminated? But then something happened and I had two new hyper spots (SUV 5 or 6) and barely visible lesions (a thickening of the pleural wall, and a very small tumor). I guess that was a mutation, rather than the resistant cells coming to the fore.
I have asked about reducing anastrozole, and was told no. On the other hand, when I wanted to go down on Verzenio (do you prefer abemaciclib? the brand names are easier to write), she denied that body size had anything to do with dosage. I looked it up and believe that what I found is that it is in a class of drugs for which load, amount in the blood stream, does vary with weight. It just makes sense to me that I have less blood and the saturation will be higher. I am at the cut off for donating blood.
I will look up resistant vs. sensitive cells for my next appointment, but also want to look at dosing of anastrozole and letrozole.
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