ER+ PR+ HER - longterm survival

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  • Goodie16
    Goodie16 Member Posts: 446
    edited February 2018

    Still here at almost 3 years since mets diagnosis. I'm still on hormonals as my first line treatment, too. Next brain scan is at the end of March...praying it is still NED.

  • zarovka
    zarovka Member Posts: 3,607
    edited February 2018

    2nd year anniversary, but i am right on your tail ladies! look out.

    >Z<

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2018

    Whoop!! I am getting so excited reading these testimonies! Si se puede!!!

    To pay you back, here is a promising research story that came out yesterday. It is an amazing story from a major cancer immunotherapy researcher at Stanford. However, I have not had time to look up the original article, and from what they write, I just can't tell if it is something that could work on patients who are already metastatic. But Z and others can maybe figure that out quicker than I. What they are reporting, in a nutshell, is that you don't have to give patients whole-body immunotherapy, massively stimulate the entire body immune system, the way CAR-T and checkpoint inhibitors do. Instead, working only in mice thus far, they found that if they inject two immunotherapy drugs right into the tumor, it gets rid of not only the tumor but also distance metastases. And if the cancer comes back, they do it again and it works again. And they think it should work on any solid tumor, and does not matter on the infiltrating immune cells. So for future cancers, they could imagine injecting the drugs right into the main tumor and then no more metastasis risk, in theory. But what about those of us whose tumors were already removed by surgery?


    Anyway, here is the link, would love some discussion!

    https://med.stanford.edu/news/all-news/2018/01/can...


  • MelZ
    MelZ Member Posts: 9
    edited February 2018

    Thank you all for sharing and giving me hope! I was dx stage iv in Oct. I had a CT scan today and am anxious for the results. I saw the Stanford article and hope that breast cancer becomes an area of focus with this tx.

  • zarovka
    zarovka Member Posts: 3,607
    edited February 2018

    I've read a bit into into the article ...

    Good news they are combining two agents that are already in human trials as single agents. It shouldn't be hard to open a trial.

    Bad news: "I don't think there's a limit to the type of tumor we could potentially treat, as long as it has been infiltrated by the immune system," Levy said.

    The "as long as" bit is a big deal for MBC. Basically they require T-cells in the tumor. This is not common for MBC which evades the immune system by becoming invisible rather than suppressing the activity of T-cells. This therapy is basically a trick to activate T-cells that are already specialized to detect the non-self signal on the cancer cells. However, there have to be T-cells in the tumor (because they recognize the tumor as non-self) to activate. That is often not the case with MBC.

    That is what they mean when they say MBC is not immunogenic ... no MHC1 receptor bearing non self signals that T-cells can see. I do not think this is an insurmountable problem because expression/lack of expression is most likely a matter of degree. However, mmunotherapy treatments tend to be applied to MBC last for this reason. Harder problem. :-(

    TNBC is an exception because develops very differently and has a different strategy for evading the immune system. Watch this one TNBC ladies ... it's coming for you soon.

    >Z<


  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2018

    Quote from https://www.mdanderson.org/publications/oncolog/july-2015/immunotherapy-trials-offer-hope-to-patients-with-high-risk-or-me.html

    Recent research findings have sparked interest in the role of immunotherapy in breast cancer treatment, said Elizabeth Mittendorf, M.D., Ph.D., an associate professor in the Department of Surgical Oncology. “For a very long time, breast cancers were not thought to be immunogenic,” she said. “But data published in the past 2 years have shown that there are immune cells, including T cells, in breast tumors. This suggests that breast tumors are indeed immunogenic.”

    ---

    TNBC is somewhat more immunogenic than ER+ according to the same article. Herceptin for HER2+ is a targeted immunotherapy.

    In general given long survival times/ high cure rates for early stage BC I would think some form of immunosurveillance kicks in for most people. I attribute my own longevity to this and a low burden of disease despite being metastatic. My immune system must have learned its lesson. Indeed in 1983, Maurice Black reported that patients who demonstrate postoperative immunity to their breast cancer tissue are more likely to remain NED than patients lacking immune reactions. Hopefully there are ways to get around an absence or lack of T cells in tumors: artificial infiltration, anyone? A sort of local CAR-T therapy as opposed to a systemic one, like the Stanford approach. It may not be feasible but a girl can dream. Now in the absence of tumors, early diagnosis of recurrence would seem to be a high priority or a vaccine.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited February 2018

    Historically this has been the belief, that BC is not immunogenic but recent research has shown that there are immune cells in breast tumors, including T cells. TNBC is believed to be more immunogenic. Herceptin for HER2+ is a targeted immunotherapy. Given long survival times/ high cure rates for early stage BC it would seem some kind of immunosurvelllance kicks in. It has been shown that BC patients who have an immune reaction to their tumor tissue are NED for much longer than those who do not have an immune reaction. I like the Stanford approach because it's local treatment and can be repeated. Recurrence in people after a long period of NED seems to indicate something can go awry with immunosurveillance. For those lacking t cells in tumors, maybe it's possible to engineer one's T cells and introduce those into the tumor, somewhat like local CAR-T therapy. In the absence of tumors (my case), early diagnosis of recurrence would seem to be a high priority or a vaccine.  

  • zarovka
    zarovka Member Posts: 3,607
    edited February 2018

    Heidi - I am with you and so is the immunologist in Japan who treats me. But I just got back from the Mayo Clinic (Number One Cancer Research Institution in the US!) where the MO, a leading researcher in immunotherapy for MBC, told me ERPR+ won't respond to immunotherapy. We have our way of thinking here in the US. It's hard to overcome certain biases and assumptions in the research community.

    It is certainly that the low hanging fruit is with cancer like melanoma and renal cell cancer and even TNBC. Immunotherapy is moving along at a brisk clip with those cancer types and that is good to see. In the meantime, I will plow my own way ....

    >Z<

  • JFL
    JFL Member Posts: 1,947
    edited February 2018

    Z, interesting statement from the MO at Mayo about ER/PR+ and no response to immunotherapy. What about Adventures with Cancer / TIL trial who is considered “cured”? She was ER+, HER-. I don’t like to hear we ER/PR+ have no hope! Singing


  • zarovka
    zarovka Member Posts: 3,607
    edited February 2018

    There are always exceptions. I would put AdventuresWithCancer (Judy) in the class of exceptions that prove the rule. Judy has cancer that does express a particular protein. I think it is mesothelin. It happened to be a protein the NIH was playing with in the lab when she showed up. I have heard her experience described as something like winning the lottery. I don't want to trivialize how challenging it is for the adaptive immune system (T-cells) to see MBC. But this onc at the Mayo clinic was over-simplifying as well. Isn't the lack of immunogenicity of MBC exactly the thing you need to focus on, you big oaf?

    For those of you who don't know AdventuresWithCancer, here is the WSJ article about her treatment. They haven't been routinely duplicating her experience and that trial is not for the faint of heart, but the NIH immunotherapy group has a whole host of trials. I strongly recommend calling them and getting vetted for their trials. It's the one stop shop for immunotherapy where you have the best luck of getting into a good trial.

    >Z<

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2018

    I think it's too early to conclude that ER-posiitve BC will not respond to immunotherapy- too many trials have only been looking at single agent treatments, and the very early data combining Abemaciclib with Keytruda in San Antonio looked encouraging, following preclinical data published in Nature last year that CDK4,6 inhibitors supress PDL1 and work synergistically with checkpoint inhibitors. Am looking around for the more complete dataset of year one of that trial, which should be out any time. There are also approaches being tested to try to increase the number of immune cells that are drawn into the tumor, and also to try to strip away marks that "hide" the cancer cells from the immune system..

  • jensgotthis
    jensgotthis Member Posts: 937
    edited February 2018

    I am two years out from de novo MBC dx. Had chemo, mx (no recon), and rads to breast area plus the bone met in my hip. Scans don’t show any tracer uptake.

    Working hard now on fatigue management and health promotion.

    So great to see long term stories here

  • Chicagoan
    Chicagoan Member Posts: 728
    edited February 2018

    Z-Would you or anyone else out there with a WSJ subscription copy the article onto this thread when you have time? I am not able to access it and certainly would like to be up to speed on possible cures. Thanks to you for linking the article.

  • zarovka
    zarovka Member Posts: 3,607
    edited February 2018

    Chicagoan, you can get a 2 month subscription to the WSJ for $1 at the moment, but this is the trial, this is Steven Rosenberg, this is more about him. I wouldn't get too hung up on that particular trial, which presents mixed bag of positives and negatives for the future of immunotherapy and MBC. The most relevant comment from the article is "Every patient is a puzzle." It makes sense to approach the NIH and see if they can figure out your puzzle and match you with the right trial. Here is the contact.

    >Z<

    Contact: Mary E. Link, R.N.(301) 496-2132ncisbirc@mail.nih.gov

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2018

    Earlier in this thread Cure-ious mentioned Her2 positive vs Her2 negative mbc survival. I may have read what you read, Cure-ious. That Her2 positive was now associated with longer mbc survival. I think it is because the Her2 meds work so very well, and I don't think cancer cells evade them as easily as they find work-arounds with the anti-estrogens. I am also concerned for myself when I notice that the long-termers I know of are typically bone only, at least for quite a while. However, we are individuals, not statistics. I'm coming up on four years liver-only (breast met went away and never came back), and appear to be NEAD for the second time according to tumor marker and lack of symptoms. So my hope is to keep going until better treatments come along and more is known about immunotherapy. I think the fact that I have survived four years means my chance of surviving another four is improved. Would that the day were here when we could all be talking about surviving decades.

  • Chicagoan
    Chicagoan Member Posts: 728
    edited February 2018

    Thank you, Z-I greatly appreciate the information.

  • Groovywilma
    Groovywilma Member Posts: 450
    edited February 2018

    I am ER+, PR+, HER2-

    I've been Stage IV for 7 years (my initial diagnosis). For the first 6 years it was in my bones only and my treatments were mild and manageable. I worked, traveled, and lived pretty "normally". A year ago it spread to my liver and I've been on heavier chemo that wipes me out and took my hair! But I'm hoping that the chemo continues to be effective and last a long time before having to switch to the next treatment. I'm hoping for many more new effective treatment options for everyone!!!

  • Roaming_Star
    Roaming_Star Member Posts: 103
    edited February 2018

    Groovywilma… hoping chemo keeps you posting here a long time too. :*( sorry about your hair... It sucks

  • artistatheart
    artistatheart Member Posts: 2,176
    edited February 2018

    Shetland, I have the same stats as you HER2- and that has me concerned about long term survival as well. I am very anxious for my latest results on Friday....

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2018

    Artist, I think of you often and wish so much for you to feel better and have good long-term treatments. I cant’t remember, have you had Foundation One or Caris testing?

  • zarovka
    zarovka Member Posts: 3,607
    edited February 2018

    Artist - praying for some really dull diagnostics this week.

    >Z<

  • NouzayO
    NouzayO Member Posts: 79
    edited February 2018

    Hi ladies,

    I wanted to start a thread for ER/PR + and Her2 - but I found out there is one already! So let’s keep it alive!

    I agree with ShetlandPony, I too noticed that those with bone mets only tend to do better and live longer but once the liver mets kick in things get complicated unfortunately.

    I was diagnosed stage 4 de novo with liver and bone mets and struggled with short lived medications and now trying to choose a different one and really want to make the right choice, if there’s such a thing with MBC! I appreciate all your stories, insights and encouragement!!

    Please, if you’ve started doing things differently to augment the medication effectiveness, tell me about your experiences!! Certain excercise, alternative medicine or dietary restrictions.. anything!!

    I noticed that alot of you tried Faslodex and were successful for a long time, I was never offered that .. I tried Ibrance and femara for 6 months before it failed me.

    Now I’m considering Halaven, but not a lot of you seem to have it under your statuses?? I’m tired of IV chemo after 8 months on Abraxane! And the Xeloda did nothing for me!

    Z - you mentioned working with an immunologist in Japan?? And something about adaptive cell therapy?? Would you be willing to share more info??

    I’m also considering doing a foundation one test or a CARIS test, anyone got good advice on how to proceed with those??? Did the results change your treatment plans??

    Thank you ladies for being an incredible source of hope and virtual support to all of us metzers out there!! I love you all !!

    Heba

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited February 2018

    Hello. I am ER+, PR-, Her2- and currently on Ibrance 100, Letrozole and 6 mo prolia shot.

    My MO and I have started the discussion on what to do next as it seems all roads lead to progression. Initially, the information was overwhelming. What helped me to understand what standard treatment options were recommended once I do progress, I read Bestbird's Guide to Metastatic Breast Cancer. I highly recommend this guide. Search under Bestbird username and you will find instructions on how to request this online guide through her email account.

    Next, keep a computer or manual folder on all info obtained from our met sisters, researched topics and potential trials. Let a love one know where this folder is kept.

    Have your plan in mind. My MO and I have discussed Faslodex next with either Ibrance or Verzinio. She has already mentioned Afinitor..maybe with Faslodex or Aromasin. I guess the point being to exhaust the antiestrogens first?

    When I progress, a fresh bx will be sent to hospital pathology and F1 and they are to take multiple samples at that time for any future tests.

    Regular diet, but now limit my chocolate and wine (not cutting that out..). This is what I take on a daily basis: B complex and Citracal (both time released) vitamin C and D3. Plus either a glass of homemade lemon elixer (fresh lemon juice, ginger, garlic) or a T of Braggs apple cider vinegar with mother (mix with water). Drink lots of fluids.

    I exercise (except week 4 on Ibrance..my rest days). I walk. If I can't get outside, I walk in front of TV or to favorite music.

    I read and record funny late night comedy shows.

    Life is different with Stage IV, but we can find ways to live and find our unique path again.


  • zarovka
    zarovka Member Posts: 3,607
    edited February 2018

    Heba - Caris is the more robust test ... more biomarkers and specifically they do immunohistochemistry and F1 does not. PM regarding Japan. I am in the middle of treatment, jury is out on whether it will work for me or not.

    Sandibeach - Welcome you have a great strategy. There are a lot of options. The thinking is to stick hormone therapy as long as possible. Many women have done well on Afinitor, it's worth checking their thread for their experience. However, it can be a very hard drug and the stats haven't show improved overall survival. It's not about getting rid of tumors, its about extending a life with QOL. Ask your doctor very direct questions about the Overall Survival statistics for Afinitor ... and get the papers.

    >Z<

  • Celebrate_Life
    Celebrate_Life Member Posts: 103
    edited March 2018

    Hi all,

    Found this thread and wanted to join in.

    I will be 10 years out de novo August 6, 2018. I have been doing some sort of treatment the whole time. I haven't figured out yet, as new to this site, on how to display all my treatments. I am ER+,PR+ and HER2-.

    What is working for me!

    I try to keep my mind, body, and spirit balanced.

    LOW stress, and it takes work

    Exercise- I try to walk my dog every day and play pickleball at least twice a week.

    Healthy food lifestyle. check out www.aicr.org

    Church-regularly and I sing in the choir. Many people are praying for me and that gives me strength.

    Read the book, The Anti-Cancer book, a new way of life.

    Looking forward to hearing from and about other strong, determined, stubborn(from my daughter!) Fighting WARRIORS...

    Therese

  • jensgotthis
    jensgotthis Member Posts: 937
    edited March 2018

    Celebrate Life, can you share more about where your mets were when dx, what’s happening now, and the treatments you’ve gone through? We can learn so much from long term thrivers like you

  • Celebrate_Life
    Celebrate_Life Member Posts: 103
    edited April 2018

    Jensgotthis- when I was diagnosed in 2008, my mets were to the bones. Spine, sternum, hips. My hips looked like a Dalmatian! Eventually, all the long bones have lesions there too. Most are inactive.

    Currently, I am on doxirubicon. I just started my 3rd month.

    In 2016, my liver showed mets there.

    I need to work on my treatments and document it. I am er/pr+, her2-

    I have had most treatments, many 2 or 3 times. We are starting to run out of drugs....

    I think one of the things that had helped me most is drinking lots of water. My goal every day is to drink half my body weight in fluid ounces of water daily. Sometimes it is water, sometimes it is green tea, but I strive to obtain that goal. I believe it has helped me flush the toxins out and have kept side effects minimal, therefore being able to stay on treatments longer.

    Keeping stress down is key too.

    Therese



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