IBC lounge: roll call, support and just a good place to hang out
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TT did you happen to get a copy of the poster on the diagnostic scoring system for IBC? Since I wasn't a registered attendee I can't access it on the website until late February, but I think it's worth sharing here.
Flora hope you are healing well from surgery. What happened with the spot on your shoulder?
Hope everyone is doing well!
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If anyone wants access to the SABCS19 database of research papers, posters, etc, just PM me for login details.
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thank you, log-in worked fine. You can delete that info now if you don't want to leave it public. 0 -
Glad it worked Lori. I think this publicly funded research should be freely available to all.
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So much great info at this year's conference. I'm sure I will be spending days going through everything! Everyone was posting photos of slides and posters and I tried to watch for everything relevant, but I appreciate you sharing your access to all of it. You know what a research geek I am!
This is what I was looking for to share with our IBC group because I think it's fantastic that people are working on a more formal definition of IBC:
"Spurred by the lack of progress in improving outcomes in patients with IBC, a deadly and aggressive type of breast cancer, Susan G. Komen, the Inflammatory Breast Cancer Research Foundation, and the Milburn Foundation convened patient advocates, breast cancer researchers, and clinicians to review the state of IBC care and research globally, and propose specific initiatives to move the field forward. The outcome of discussions was abundantly clear: the field needs a formal definition of IBC. Without a clear definition, both patient care and research suffer. Diagnosis remains subjective and treatment variable. Clinical trials become inherently underpowered by the inclusion of subjects with locally advanced, but not inflammatory, breast cancer (my comment - locally advanced can often present with symptoms such as swelling and redness that are similar to IBC). Similarly, the search for a molecular sine qua non or unifying pathway aberration is hindered by inclusion of bio-specimens from subjects with a different disease.
The goal is to move beyond subjective "clinical diagnosis" to a set of specific diagnostic criteria and scoring system that will advance IBC research and facilitate the discoveries that will improve care of IBC patients. Here we propose a definition of IBC based on a review of clinical and pathological features."
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Hi Lori hope you are feeling well. How is the new treatment going? I always think about you and check if you have posted anything. Thank you so much for all the help and support all these months. I got a X-ray done and it came normal but I still have pain and the doctors don’t feel anything is wrong. I had peau de orange like spot on my surgical scar today and I went here and there to get it checked . Have a surgeon appointment on Monday. Nurse said it doesn’t disturb her but after this whole IBC experience I have gone crazy. I am looking to get some anti anxiety pills. I hope you stay happy and health always . I have attached the pic in this comment and my family thinks I am crazy. I asked my oncologist to get some scans as she said that after radiation she does not encourage any scans
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Lori thank you for posting this. Is there a way we can download this image. Does it mean they have now firm
Way to diagnose IBC and not just clinically as still my surgeon and oncologist disagree it’s IBC. Eventually they say doesn’t matter as the treatment is same and it’s stage thre
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You do need to wait almost two months for enough radiation to leave your body after rads for scans to be accurate, otherwise the radiation can look just like cancer "hot spots".
You can right-click and "save image as..." or you can log in to the site with the info TT gave and search under posters, then search for "Inflammatory Breast Cancer". If you just want larger text so you can read it, you can always use Control and the scroll wheel on your mouse to zoom in here.
It's only a proposal at this point, but yes it is meant to address exactly your type of situation where they aren't quite sure or don't agree. Especially if the skin punch biopsy comes up negative and there are only some moderate IBC symptoms, there is currently no way to know for sure that it is really true IBC. But even locally advanced non-IBC breast cancer can have dermal lymphatic invasion, so it weights a variety of factors.
While it may not cause an issue with treatment because they typically would treat as IBC to be on the safe side, researchers can't identify the mutations and aberrations that may be specific to IBC in order to improve treatment outcomes when cases that are only "suspicious" but not definitive are lumped in with true IBC for research purposes. For someone like me battling all of these resistance issues, having researchers be able to hopefully identify what makes IBC unique means they could also hopefully one day find a drug that can fight it if they can find something targetable.
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Lori, great that you found that poster. My poster tour group looked at it and interviewed Ginny, second left, the women who did the research into new methodology for diagnosing IBC.
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Dear Lori thank you so much for the information. I am still waiting for the radiation date. Lori in the conference I saw that have said about RCB index with the long term survival. Just curious which category I fall in. MD Anderson has an online calculator and from the pathology report that’s hard for me to calculate. Will ask my oncologist if I see her next time. Thank you so much for the information. Lori wish we stayed closer and I would have loved to visit you.
I will try to go next year for the conference. Travelnext thank you so much.
Regards
Flora
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Lori they asked me when I want a scan as my oncologist is not in favour of scans . Have them scheduled Tom
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Hi friends just was discussing about having 8 positive nodes but clear margins and tumour reduced from 5 to 3 cm. Does this make he sallninto RCB 3?
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Dear Lori, you can also check "Atezolizumab in Combination With Trastuzumab Emtansine or With Trastuzumab and Pertuzumab in Patients With HER2-positive Breast Cancer and Atezolizumab with Doxorubicin and Cyclophosphamide in HER2-negative Breast Cancer: Safety and Biomarker Outcomes From a Multi-cohort Phase Ib Study". It is very interesting and promising. Saulius
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Saulius the results of KATE2 Phase II presented at ESMO2019 showed that the trial missed it's primary end points and there was only a small benefit for people with PD-L1+ expression. 4 month improvement in PFS for the small number of PD-L1+ trial participants, with a slightly higher level of toxicity. Phase Ib of NCT02605915 presented at ASCO essentially said that no conclusions could be made due to the small, non-randomized sample.
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Lori you are right... but the idea of making disease more immuno-visible and tries to reverse resistance... and response rate in this small sample is still very interesting. Sure, highly selected small sample though (SABCS poster)... Sorry, I did not see the data from Kate2-phII, will check it. Thanks for your input (you are always so well informed - big gift for us)and wish you a calm and beautiful Christmas! Saulius
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Lori May the new year bring you lot of happiness and good health.
Merry Christmas to all my friends here 🎄
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Yes, Happy Holidays everyone. And all the best for 2020.
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A belated Merry Christmas to those who celebrate and Happy Holidays to all! Had infusion #5 yesterday and will see how things go. Hope 2020 brings good things to all of us.
Saulius, I did more research on atezolizumab as immunotherapy since it's been talked about a lot since being presented at ASCO2018 last year. This ties directly into my posts in the "Death and Dying" thread about how PFS does not always correlate with OS, especially with newer cancer drug approvals. When the IMpassion130 trial was presented at ASCO2019 earlier this month this is what it showed - IMpassion130 showed early promising results with atezolizumab and abraxane (nab-paclitaxel) for Triple Negative patients based on PFS as a surrogate end point, and it was much celebrated in the press (2018). Those promising early results led to accelerated approval by the FDA earlier this year for metastatic/unresectable TN breast cancer that is PD-L1 positive. When the updated interim results were later published a few months ago, atezolizumab showed only modest improvement in PFS (1.7 months) and no improvement in OS (in exchange for a higher level of toxicity). OS was negative for everyone except the small subgroup of PD-L1+, but even then, some researchers who did a deep dive into the data pointed out that the improvement in OS was only in the sub-group that had PD-L1 between 1%-5%, there was no significant improvement in the sub-groups above 5% PD-L1, which is exactly the opposite of the way one would believe this drug to work. And most of people who responded to the drug had it as a 1st-line treatment, so there's little evidence at all to support using it as a subsequent line. Most think the hypothesis is sound, but there needs to be better RCTs to discover who it will actually benefit (larger sample size, paclitaxel instead of nab-paclitaxel since nab-paclitaxel trends toward inferiority in OS by 3 months, better identification of appropriate biomarker, etc.). Oh well, too bad it's already an approved drug here in the US that will do nothing to help most TN patients with MBC live any longer.
Everyone is in a rush to get these over-priced drugs to market and make money. It's critical to take a deep look into the data to see beyond the hype when considering the newest miracle drug. I follow a few oncology researchers on Twitter who spend a lot of time analyzing trial results and sharing information like I've posted above.
(For those who aren't metastatic and may be reading along but unfamiliar with the terms, PFS is Progression Free Survival or how long before our cancer starts spreading again (or we die). OS is Overall Survival, or how many months a cancer drug/treatment adds to our life, measured from time of randomization to time of death from any cause compared against a control group. RCT is a Random Control Trial.)
In fairness to Genentech, their website does note that continued approval of atezolizumab for TN is dependent on study results to confirm benefit, but it's just another example of why I'm so cynical about all of these "ground-breaking, miraculous, game-changing" early trial results based on surrogate end-points.
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Your cynicism is well founded, Lori, and I know it's based on bitter experience. I can see that you've had radiation, but as a de novo, obviously no surgery. This means in the whole two years plus a bit since diagnosis you've been on a chemo merry-go-round. I can see from recent research for an article I'm writing that PFS and OS are somewhat a variable crap shoot for individual patients and I was wondering how you and your MO go about deciding on new treatment when one is obviously not working.
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TT I hope you are still doing okay with the fires out there!
You might be interested in a paper I had shared in the Death and Dying thread -
"A really great paper was just published today in advance of ESMOAsia19 that talks about the problem of PFS being used as a surrogate endpoint and lack of improvement in OS. If anyone is interested in reading it, it will be available until January 10 - https://www.sciencedirect.com/science/article/abs/pii/S2213538319300724
The main point of the paper is that from 2009-2018, new cancer drug approvals have increased steadily from 5 in 2009 to 33 in 2018 BUT the percentage of approved drugs that improve Overall Survival has reached its lowest ever at 7% (that's a whopping 2 out of the 33 approvals in 2018). Of the few drugs that actually improved OS, in 2017 the median OS improvement was 2.8 months and in 2018 was 4.5 months."
I later noted that the paper pointed out that most of the drugs that showed no OS improvement were regular approvals, not accelerated approvals. I won't pretend to understand the lack of correlation between PFS and OS, I need to do more research on that myself.
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Yes no surgery for me because at the time of my DX my mets were so extensive in my skeleton (only small ones in my liver) and the cancer was spreading so fast (right before our eyes) that they didn't think I would last 60 days if I didn't immediately respond to the first chemo we tried. Although I did have a good initial response, it started growing again within a couple months. We have never been able to get it under control since then. I haven't had a scan with no progression in two years now. When I again asked about surgery they felt it would do me more harm than good. My prognosis is poor, we can't stop the cancer from spreading, and removing only part of it won't do much for me, plus now I have that tumor tangled in my brachial nerves which really complicates things. Surgery would only negatively impact my quality of life. We saved radiation for two reasons - radiation is localized treatment and I needed systemic treatment, and we saved it for when it became chemo resistant because everyone strongly suspected it would (IBC is known to be resistant to chemo and radiation). And of course it did late last year. It was spreading too fast to try another chemo, so we tried rads. Rads cleared up my skin but there was only slight shrinkage of the tumor in my brachial nerves, it was still bigger than it was before we tried the chemo that failed, but at least the pain had lessened. And while undergoing rads from January until the end of March (and still on Herceptin/Perjeta) it spread into several dozen lymph nodes throughout my body. I haven't been able to find ANY research or info about breast cancer that has spread so extensively in the lymph nodes throughout the body. At best I see people with a mediastinal node, but I have "multiple clusters" all throughout from my neck to my abdomen. Scary because the lymph system is one of the primary ways cancer spreads.
How we chose a treatment depends on how fast the cancer is spreading at that moment. You've been following my story so you know that once mine gets growing it spreads like wildfire. My MO didn't want to burn through all of my HER2+ targeted treatment options too quickly, which is why we didn't immediately move on to Kadcyla. We've tried twice to see if I could stay stable on Herceptin and Perjeta when we thought we had things under control, but no luck with that. New biopsies confirmed that it was still strongly HER2+. Genome sequencing found that the only actionable biomarker is erbb2 (HER2+). So there's no explanation for why I don't respond to HER2+ targeted treatment, although my MO does believe it slows down the growth even if it can't keep it under control. When it's spreading fast and I'm in a lot of pain, we've been adding a chemo to H&P. My MO has been very up front about the fact that a chemo like Taxol won't extend my life, it's just for palliative purposes to get the pain under control and hopefully stop the cancer from spreading so fast. The goal is to live as well as I can with the best quality of life possible, which means keeping the pain under control and trying to keep the cancer from spreading to more organs. My best bet for extending my life was Herceptin+Perjeta. The first line is almost always the best chance for increased OS in MBC. When the tumor in my brachial nerves starts growing the pain can be unbearable and I have lost use of that arm before, so that one is our primary focus until something else starts causing problems (like the extensive lymph node involvement, or IBC skin mets). But every time we think we have it under control one place, it just pops up somewhere else.
If/when Kadcyla fails (won't know if it's actually working everywhere until we scan, although I do know that the swollen nodes in my neck have shrunk and the cough is gone), we'll go back to trying another chemo with Herceptin. When it's spreading fast we need to hit it with something hard until we've stopped the spread & get it under control again. I asked to try Kadcyla this time after we talked about other chemo options, only because the holidays were coming up, the SEs seemed a little easier and I wasn't emotionally ready to lose my hair again. There isn't a clear third line option for HER2+, although many are saying that Tucatinib+Capecitabine+Herceptin might become SoC 3rd line when it's approved. I don't know if that will work fast enough for me, my MO wasn't in favor of Capectabine for me last time we discussed options. And I don't know if it makes sense to save that triplet in case I develop brain mets since 50% of HER2+ MBC develop brain mets. I'll probably just continue working through all of the nasty chemo options to see which one(s) might work and end up bald for the rest of my life unless I have some kind of a miracle with Kadcyla.
Somehow despite all that I've managed to beat the median OS for a Stage IV de novo IBC diagnosis (22 months) and my labs still have never wavered, so my body is staying strong. I'm in good shape physically to keep trying new treatments, even if I feel emotionally beat down. I have to give my MO some credit for that.
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I should add that WRT surgery, within months the cancer spread from my skin into my pec muscle, chest wall, and two tumors in the outer quadrant of my breast into the axilla (the one tangled in the nerves), so any surgery would be quite extensive. They would have to basically strip everything on the right side down to the bone, try to untangle it from the nerves without doing more damage, and do extensive skin grafting. And since the IBC keeps spreading into my left breast every time it acts up, who knows about that side. And after all that I would still have cancer in other places in my body. That's why they say it would do me more harm than good.
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Dear Lori, my heart bled when I read your story. I knew it more or less but you know... it is so scary, and I am so sorry for you, for all of us. We are with you. My wife and you have been diagnosed almost at the same time but reading your story I start to wonder if my wife is really IBC... so far I heard it from only one doctor, all others said "no"... although from the poster you posted here on the forum, I'd say she is IBC de novo...
I can understand your skepticism regarding drugs and clinical trials. PFS does not necessarily translate into OS because of several reasons. I think PFS alone cannot be a predictor at all because it includes also people with RECIST "stable" condition (increase not more than 20%?), so PFS should better come with positive response (partial response maybe?) - this is the population where the drug works, this is where I check if the drug is really good. There's such a huge need for drugs for stage IV people, that I think to wait for 5 or more years until OS is clear, is not possible anymore but PFS should be not one-dimensional criteria. Also billions poured into cancer-drugs do not correlate with drug-effectiveness because we need new approaches, not new drugs with old approaches. I think if we could combine a very effective chemo or ADC with some immune-stimulating drug, we could produce cures with memory and with controllable toxicities. That is why I like the idea to combine atezolizumab with HER2/Chemo drugs. And table 7 in the poster with figure 3 for cohort 1F there seem so cool, although for a small subset. Probably that is the way to go with more different expressions than PD-L1 only.
Lori, New Year is coming and wanted to encourage you: your treatments now show good signs, and next scans should be good too, so there are things to hope for. Let's wait for these results and then celebrate! Sincerest hugs,
Saulius
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Wow, I just found this in FDA web-site: "Food and Drug Administration granted accelerated approval to fam-trastuzumab deruxtecan-nxki (ENHERTU®, Daiichi Sankyo) for patients with unresectable or metastatic HER2-positive breast cancer who have received two or more prior anti-HER2-based regimens in the metastatic setting. More Information. December 20, 2019"!
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Lori, all good here. Will digest and write up that interesting looking study of how ineffective new drugs mostly are. Thanks.
Your treatment history is as riveting reading it as it is heartbrking. Nothing works for long with you. I don't know anyone on BCO who has been as involved in their treatment as you. I'm in awe of your strength and endurance, but don't envy your times in pain.
BSandra, since IBC is a clinical diagnosis you will find not all doctors agreeing about individual cases. You, too, are following research. Are all those drugs available and affordable in Lithuania? I hope so.
To all of us, may 2020 bring us the good health we crave.
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Dear TT, not all drugs are literally available here - oncology is covered by the state insurance, so they choose carefully what to cover. There's an evaluation system, so if our "FDA" does not see real benefits of the drug in comparison to already covered drug, they do not cover drug costs. Sure, you can buy them yourself but who could afford that? We have a private insurance system here in addition to state-insurance but it was just started 10 years ago, so pretty immature. For HER2+, we have Trastuzumab, Pertuzumab, Lapatinib and T-DM1, as well as most chemos all payed by the state insurance, but not the newest drugs like Neratinib, Tucatinib, etc... Some of newest drugs, I believe and hope, will be approved soon. Saulius
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Once again I'm always the cynic - re ENHERTU, which is DS-8201, I know someone who was in the trial and had a successful two year run on the drug (she just now had progression and is moving on to her 7th line of treatment). BUT, the rate of Adverse Events Grade 3 and higher was 50%, the drug killed 5 people during the trial, and the rate of ILD (interstitial lung disease) was so high that it required an outside independent agency to monitor. So flip a coin, heads and the drug may work for you and you'll tolerate it well, tails and you'll be so miserable that you wish you were dead. 50% Grade 3 and higher is a crazy high level of toxicity (for those who don't know, Grade 4 is life-threatening and you're in the hospital, Grade 5 is death).
There are many of us (oncology researchers included) who think they aren't paying enough attention to toxicity levels and Quality of Life. We are advocating for lowest effective dose instead of highest "tolerable" dose, and thankfully this issue was brought up at ASCO2019.
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Yes dear Lori, but then these drugs are one more option and a chance for someone. Bringing someone to complete response in the 6-7-8th line setting is remarkable and almost unheard of. I am for these treatments, for faster approvals, for more options, whatever they are, whatever the toxicity is - first approve, give us a chance to live, and then improve toxicity profile.17 years on average to bring drug to the market is absolute nonsense. We need not QoL, we need a cure first at almost whatever cost. Happy new year to everyone! Saulius
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It's easy to say that we don't need QoL when you're not the one living with it. What's the point of living if you're so miserable that you wish you were dead? QoL is everything.
It's amazing that my friend got 23 months on it as her 6th line of treatment and that she tolerated it well. I wish that everyone will have similar success with it. But 50% of the people who try it will find the SEs intolerable and 20% will have life-threatening SEs. SEs are cumulative and almost all HER2+ targeted treatments are cardio- and pulmonary- toxic, so the further down the line you go, the more likely you are to have serious problems with heart and lungs, and those are SEs that can kill you. Many people discontinue a drug (or treatment altogether) when they can no longer tolerate the SEs.
Hopefully they will get the toxicity of ENHERTU under control once the drug is being used in the real world (like they did with capecitabine), and before it's something I need to consider. Right now it looks like tucatinib+capecitabine+herceptin may become SoC 3rd line once it's approved in early 2020, and that's good news since it crosses the BBB to work on brain mets and HER2+ has a 50% risk of developing brain mets. Although since they don't yet know if it works to prevent brain mets, I think I might prefer to save that one in case I actually develop brain mets.
All we can do is roll the dice and hope we get lucky with something that works and is tolerable.
Here's hoping that 2020 brings us all a better year!
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Dear Lori, I am very sorry, I did not mean to say you (or anyone) do not need quality of life - I tried to say we need a cure first, and first cures will come with price to pay, probably a decreased QoL. Cancer will always have to be approached aggressively, I do not believe it can ever be cured easily, there will be no easy way... Same happened with Kymriah and Yescarta: there are side effects that will last for the rest of peoples' lives but at least they have a chance to live. I don't have cancer myself, true, but I see, live with it every day. It is very scary, very. In the end... no one of us, healthy today, is protected from having to deal with it tomorrow. I am sure Enhertu and similar ADCs will play an important role in combination with some immuno-therapies, and will exchange traditional chemotherapy. And with that first real cures will come for stage IV, maybe they are already on the way. Hopefully that happens sooner. Lots of love, Saulius
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happy New Years everyone.
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