8 years, 7 lines of treatment

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ABeautifulSunset
ABeautifulSunset Member Posts: 990

Blessed to have made it almost 8 years so far. Doctor says there are still a few things to try, but each of those only hold a 6 mo or so time to progression.

Is there ANYONE who has found a longer term successful treatment after many other lines have ultimately failed?

I'm pretty scared now that my time/luck is finally running out.

Sunset

Comments

  • Grannax2
    Grannax2 Member Posts: 2,551
    edited February 2019

    I don't know of other TX but I do want to congratulate you on your eight years. Curiously where are your active mets, now?

  • holmes13
    holmes13 Member Posts: 214
    edited February 2019

    have you tried any trials? sometimes they work longer. i remember last year when i first came to this site i found much inspiration by you. keep the faith more treatments are coming.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited February 2019

    Grannax, most of the eight years was bone only, and I always felt safe. I have had contunous liver progression for the past 6 MOs. At the moment it's not slowing down, but I just started Gem/Cis, so I guess it's more wait and see. If it works, it may only buy me 6 MOs Or so before I have to move on.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited February 2019

    Holmes, I'm in the process of getting a Guardant 360 or Foundation report so I can look into trials. I ave always been pretty vanilla, no mutations. But things could be changing.

  • 50sgirl
    50sgirl Member Posts: 2,527
    edited February 2019

    Sunset, I have no sage words for you. I would second Holmes’ suggestion of clinical trials. I know it is frightening to think that options are limited. I am on my fifth line of treatment in less than four years, and I am avoiding thoughts of what that might mean. My MO did tell me that there were several clinical trials that I might be eligible for. I am vanilla, too. Although I always thought I would jump at the chance to try a trial, I surprised myself by choosing Taxol first. When this fails, I will definitely consider a trial because some people on these boards have seen some longer responses when they participate.

    You did not mention how you are feeling. I think it becomes particularly difficult to believe we are running out of options when we feel well, and in many cases even normal. How can this be?

    I do hope that Gem/Cis are effective for you and remain effective for much longer than expected. Everyone is different, and that combo might be your magic bullet. I also hope that there are breakthroughs coming soon for all of us.

    You have been a great source of supporte for many of us here. I am sure someone will post about their good experiences soon so you can receive the encouragement and support you deserve.

    Hugs and prayers from, Lynne


  • 50sgirl
    50sgirl Member Posts: 2,527
    edited February 2019

    Sunset, I almost forgot. Have you asked your MO or an interventional radiologist about a Y-90 procedure? Since your Mets are most active in your liver, it is worth looking into. Grannax will be able to answer any questions you might have. The procedure got rid of her liver Mets for 18 months, I think. Others have also experienced good results. If your MO isn’t sold on the idea, it might still be worth it to consult with IR for evaluation. At worst, you can be told you aren’t a good candidate, but you might be told that you are. Nothing to lose.

    Hugs and prayers from, Lynne


  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited February 2019

    thanks Lynne. The Mets are pretty diffused, there are one or two larger ones. If this helps but a few areleft we will do y-90.


  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2019

    Sunset, Time to change it up! When the cancer comes back after chemo, it could be more sensitive to immunotherapy (having acquired more mutations). And we see these trials combining immunotherapy with other drugs that are known in the lab to make cold cancers, like MBC, become "hot" or responsive to immunotherapy.

    What part of the country are you in? We can look around for some clinical trials that you can investigate. One thing they often require is "measurable" disease, and I think that means some kind of liver or lung mets of a particular size, so they can tell easily if the drug is working (causing it to shrink it or at least not grow), so it would also help to know if you have "measurable disease". The other thing we need to know is whether you have had more than two chemo treatments in the metastatic setting.

    The thing about immunotherapy is that most people do not respond, but for those who do, it tends to work for a really long time! And the scary side effects of having your immune system go into over-drive is fortunately quite a rare event- Jimmy Carter took Keytruda at age 93 for metastatic melanoma, and it hasn't seemed to bother him at all! But the best is that you stop putting a pressure (by taking chemo or a targeted drug) on your cancer to mutate even more, which it does in order to find a way to grow despite the presence of the drug. Instead, all of a sudden the cancer comes under attack by your own the immune system, which works 24/7 to hunt down the cells and destroy them, and the longer you stay in treatment, the more your total cancer burden is decreasing -by contrast, a lot of drugs just put the cells to sleep, rather than kill them (or eat them, which is what immune cells do).


  • grigoris
    grigoris Member Posts: 19
    edited February 2019

    My wife is pretty much at the same status. She is an eight years survivor with liver mets. Strong er/pr positive her2 neg. She has exhausted all hormonals and is now on taxol carboplatin avastin combo. She has just completed first month of treatment. In parallel we have received the first biopsy results that showed that immunotherapy could not be applied. PIK3CA is not mutated as eell so Alpalisib is ruled out. We are still waiting for TMB (another test for immunotherapy).

    I am trying to figure out the next steps and the only thing I see is more chemo and possibly tamoxifen.

    Any other ideas are more than welcomed.

    There is one thing that I am trying to figure out. After a chemo break can someone go back to the same regimen if it has helped to reduce tumor?

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2019

    Grigoris, Can you list all of her treatments (especially, how many chemos she has had)? The point about chemotherapy is that breast cancers, like many solid tumors, do not respond (unless you have rare mutations like CDK12 mutation or mismatch DNA repair factor mutations that give high tumor mutation rates). However, there is much hope in combination trials, where immunotherapy is offered with a second drug that removes the shield the tumor is using to hide from the immune system or releases some of the natural breaks that restrain the immune system. So, the question is whether your wife is strong enough to enter a trial, and knowing her treatment history is important for assessing whether she might be eligible for a trial.

  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited February 2019

    Beautiful Sunset, like you, I am heavily pretreated. Congratulations on 8 years. It has been 6 1/2 years since I was diagnosed with liver and bone mets. I've had several lines of treatment with short or no effectiveness, but Doxil gave me 20+ months. Treatment after Doxil was ineffective, and options were sparse. My oncologist recommended tamoxifen (which I first had from 1989-2000), and this time it worked well for 13 months . Since progression with it, I've been on Verzenio for 7 months, and scan last month showed some improvement. You had mentioned Tamoxifen, and it certainly is worth a try. Same with Verzenio. There are some options, although I do wonder about post-Verzenio, but I try not to think ahead too far. Good wishes to you!!

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2019

    Wow, Schnauzer, you made my day to realize what a big rebound you going back to the hormonal treatments after chemo!!!

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2019

    BeautifulSunset, this something I do not want to hear. You know, six months may be the average, but some of the treatments could work longer for you. And Y90 is entirely appropriate for diffuse liver mets. Add immunotherapy or other trials, and it adds up. F1 should check MSI to see if Keytruda is an option. Make sure you get sensitive Her2 testing, since Her2+ would open up a whole new kind of treatment, like it has for WoodyLB. Maybe this is a good time of for a second opinion just to get a fresh look and maybe new ideas.

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited February 2019

    Shetland Pony, my friend. I'm just feeling sorry for myself and a little anxious. My ONC said they don't do Foundation testing, they do Guardant. so I told him there is a first time for everything. Hoping to get something out of the liquid biopsy I just did. Gotta wait three more weeks to see if this line of treatment is working it not. The Gem/Cis makes me feel like I'm on chemo. Not too happy about that.

    Second opinion may be in store soon. Waiting for report.

    Thank you for your concern. Glad to hear you are still doing well.

    Sunset

  • Nkb
    Nkb Member Posts: 1,436
    edited February 2019

    SchnauzerMom- I am so glad that you are getting a good result with Abemaciclib so far! your treatment history is impressive. Very interesting that you got 13 months on Tamoxifen.

    Did you get 2 years of good results from Aromasin/Affinitor 7/14-7/16 before you changed to Xeloda? That is impressive - how did that go?

    Have you had a Foundation 1?

  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited February 2019

    Nkb, thanks for your question. My medication signature shows up incorrectly, because it does not record the dates for Doxil, which makes it appear that Afinitor/Aromasin lasted nearly two years. Actually, I had Afinitor/Aromasin for five months, but progressed significantly on it. Started Doxil then in 12/2014 and had a great run on it until 7/2016. Doxil and Tamoxifen have been the most effective meds for me. (Taxol was effective, but I developed a form of myelodysplastic syndrome after five months, and then had to stop.)

    I haven't had a Foundation 1. Could you tell me about it?

    Thanks,

    Judy



  • JFL
    JFL Member Posts: 1,947
    edited February 2019

    ABeautifulSunset, Guardant can provide some valuable information but if you do not see any actionable results from the liquid biopsy, I would consider pushing for Foundation One or Caris test. I mistakenly did the Guardant liquid biopsy when I was on Abraxane and it was working. My results showed zero mutations/amplifications/alterations. However, before the liquid biopsy and after the liquid biopsy, I had Foundation One tests (one on a supraclavical lymph node and the other on a liver tumor) and both showed a treasure trove of mutations and alterations. I just started an FGFR inhibitor through the NCI MATCH trial a few days ago. The trial looks for any types of solid tumors (regardless of what type of cancer) with certain mutations in a whole bunch of different "baskets" testing different medications. Due to having an FGFR1 amplification on my F1 report, I qualified for this trial. The NCI MATCH trial does not have limitations for heavily pretreated patients and there are few qualifications to be accepted other than having an actionable alteration in one of their baskets. The drug I am taking, erdafitinib, is currently pending FDA approval for urothelial (bladder) cancer as it has demonstrated a good results in those trials.

    Y90 is also a good option for you. It is the first thing that has made me feel like I am not chasing down my liver mets from behind. All of the treated lesions have remained inactive. However, Y90 only treats active tumors (that are highjacking the liver's blood supply). Tumors that are inactive or in remission at the time of Y90 will not be treated and may grow later. I have had a few small tumors grow since Y90 - tumors that were not present at the time of the Y90 but were present at other times in the past - but on a much smaller scale than my typical progression. My MO mentioned that I could do a second Y90. Apparently, in colon cancer, Y90 is sometimes done 3 or so times.

  • Nkb
    Nkb Member Posts: 1,436
    edited February 2019

    Judey - the foundation 1 test is one of the tests that looks for your particular mutations to try to help figure out what kind of treatment might target what is driving your cancer. You can do it from a biopsy of cancer tissue or blood or bone marrow. There are other brands of tests that give this inas well. You can google foundation 1 to get more info about costs etc.

    many people on this site have had this or a similar test and share what their mutations are.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited February 2019

    Sunset, I think I understand. Ideas, advice and encouragement can be good. But sometimes what a person needs is simply for friends to stand beside them and agree that the situation is scary and depressing, and that chemo is hard. I am sad to see my friend going through this and I am worried about you. Basically it sucks.

  • janeyy
    janeyy Member Posts: 6
    edited February 2019

    Hi,

    Absolutely no clue if this is the right thread or topic to write to, but I’ll give it a go. I’ve been reading posts in this forum for almost two years; never posted anything but have found strength and hope in other’s posts. now I felt the neee to write a few words.

    To summarise: My mother has stage IIIV Breast cancer, with bone mets. Diagnosed right off the bat two years ago, the doctors found it by coincidence. She’s been in fantastic condition for 98% of the time. She’s in her 50s, very active. The last month or so however, has been horrendous. They have found mets in her liver and she has been hospitalised and very ill for weeks.

    She’s on taxol now, and have had two rounds of it so far, but is reacting terribly to it. Very sore throat and mouth, fatigue and she struggles with lots of Ascites in her stomach. She’s had taxol before (months ago) and didn’t feel a thing then, so this is new. I’m scared they might need to take her off it.

    Would mean a lot to me if anyone has any experience with this or any advise to give on this.

    - Concerned daughter

  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited February 2019

    Janey,

    Please re-post your note on the liver mets thread, where you will get tons of help and support!

    https://community.breastcancer.org/forum/8/topics/...

    Also it would help to mention more about your mom's condition, especially did she get a new biopsy on the liver mets when they were discovered? It is important to make sure the cancer remains ER-positive, and since it has obviously mutated, has sequencing been done to learn what are the mutations that may be driving the cancer growth at this point? In addition, has she had a second opinion for what to do next, and is she being seen by an oncologist who specializes in breast cancer, at a major NCI center if possible? It does not sound like she has had clinical trials as yet? The more information you can provide on her case, the more specific the responses will be- Good luck!!

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