order of treatments and some Qs

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elise24601
elise24601 Member Posts: 155

Hi,

I tragically just progressed to Stage IV after a lytic lesion was discovered in my distal femur. It's too small and in the wrong spot to biopsy, so my onc is assuming the receptors have not changed since my original dx (hormone positive, her2 negative), and treating it as such.

Now, I have some questions.

First, it appears I have a few treatment options to start with: one of the Ibrance-family of cdk4/6 drugs, a parp-inhibitor like Lynparza, or Faslodex along with my Arimidex and Lupron. Is there a smart strategy here in terms of choosing which to begin with, since we all know I will eventually become resistant and progress no matter what? Have researchers discovered that going in a certain order can prolong survival, or is it just a guess?

Second and relatedly, is it true that each line of treatment will be effective for fewer and fewer months as we go down the list? (In other words, the earlier ones will work for longer and towards the end I'll blow through them quickly)? I've read this fact before, but wanted to see if it corresponds to the experiences of people here.

Third, I know lots of people like to get Foundation One (and similar) testing done on their tumors, but if mine cannot be safely biopsied, what are my options? Can blood tests work for this, since I probably have circulating tumor cells? Or is this something to be done later when I have bigger masses and fewer treatment choices?

Comments

  • NancyHB
    NancyHB Member Posts: 1,512
    edited April 2019

    elise- I’m sorry to learn of your progression. Am I reading right that there’s no only the one small lesion on your femur? I ask because I’m in a similar situation - two small lesions, one on a rib and the other on my sternum - that can’t safely be biopsied. My MO diagnosed them as mets when correlated by CT and bone scan (I have another lytic lesion on my pelvis that only appears on CT which she believes is a bone island so we ignore that one). Because neither of these lesions causes me significant issues (some tenderness but nothing I can’t deal with for now), and because we’re trying to maximize treatment options (assuming I’m TN), I’m holding off on treatment for now and opting for a “wait and see” approach. We scan quarterly to watch for progression; when there is a big change in the lesions, when new ones pop up, or when the pain becomes too much, we’ll examine treatment. My MO was very clear from the beginning that treatment is palliative not curative, and once treatment starts it doesn’t end. She is more conservative in her treatment approach, though, because she considers me ogliometastatic. Right now I feel pretty good, and I hate the idea of treatment again if I can avoid it, even for a few weeks or months. After two years I think I’m at the point where that’s coming to an end, though.

    You’ve done a lot of research on treatment options, I hope you find something that works to beat this back to stable and NEAD quickly. I’m really sorry you find yourself here.
  • elise24601
    elise24601 Member Posts: 155
    edited April 2019

    Thanks nancy - yes as of now it's just the one lesion. So you've been doing "wait and see" approach for 2 years now, without much progression? If so, that sounds pretty great. What size are your mets?

  • SandiBeach57
    SandiBeach57 Member Posts: 1,617
    edited April 2019

    Hello.

    Yes, there is a certain order that is typical. The thought is to exhaust all antihormonals with targeted therapies, before going to systemic chemotherapies. But in saying that, all situations are different. If you have more aggressive or extensive mets at diagnosis, your MO could start with chemo to get you stable, then switch to antihormonal + targeted rx.

    There are also radiology palliative procedures for bone mets, others with bone mets can speak to that topic.

    If you are oligometastatic, there are MOs that will treat aggressively to go for curative effect. Once your MO discusses your plan, it is suggested and encouraged to get a second opinion.

    Do some reading to help with your questions. I have attached a link to Bestbird's Guide to Metastatic Breast Cancer. You can download for free or buy the hardback via Amazon. The link will tell you how to requesr the free download. She is long time active on BCO and Inspire and also living with mets.

    I believe Parp Inhibitors are still in trial phase. And I cannot answer your question regarding the more treatment, is the response time shorter..others will chime in from their experience.

    Also..can you do a liquid biopsy? I believe Foundation One can offer these now. I have never had these tests as my MO is waiting for progression to send off biopsy. She feels as more time passes, additional mutations will be discovered.

    Pop over to the Bone Mets Topic for helpful advice and once you have your treatment plan, there are specific topics set up, for example the Ibrance (Palbociclib) topic/thread. There is even a Oligometastatic discussion topic.

    Keep us posted and we will see you on the other topics/threads!

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


  • NancyHB
    NancyHB Member Posts: 1,512
    edited April 2019

    elise - my MO tells me there’s no way to determine true “size” of the mets because of their location, but they’re still reasonably sized (the rib met appears to be about 1.5 inches long, the sternal lesion about the size of a dime). I started with the lone rib lesion, and progressed after 15 months with the sternal lesion (directly under my two previous tumors). As SandiBeach pointed out some MOs take an aggressive approach to treatment with ogliomets with a curative intent. I had just come off my second go-round with chemo when the rib met was discovered and I wasn’t excited about jumping back into tx. radiation is an option down the road but since I’ve already had rads to that area my MO says chemo would be first. That’s how I ended up choosing to watch-and-wait a little while. I live my life in 3 month increments right now. When I had progression 9 months ago we talked about chemo - but I asked to wait a little longer. I have a lot going on in my family life that requires full-on time, attention and energy, so yes, I’m dragging this out as long as possible. I feel lucky to have this choice right now.
  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited April 2019

    With so few mets, a second opinion at a major cancer center with a specialist in metastatic breast would seem to be the best advice- I definitely wouldn't wait & see, but attack and go for a cure- awhile ago, MD Anderson said they were curing 25% of these kinds of cancers with targeted radiation and anti-estrogens (not chemo), and that was in the days before Ibrance...

  • NancyHB
    NancyHB Member Posts: 1,512
    edited April 2019

    Cure-ious, my MO is the MBC specialist at Univ. Of Michigan. Given my history, she doesn’t seem confident that a “cure” is necessarily possible. But I may broach the topic with her again at some point.

  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited April 2019

    Elise, you had mentioned reading/hearing that successive treatments are effective for increasingly shorter times. I believe that was the conventional thinking a few years ago. In fact, my oncologist (whom I trust and admire) mentioned that same thing to me when I was first diagnosed with mets almost seven years ago. (I then envisioned my treatments as similar to the Russian nesting dolls with smaller and smaller amounts of benefit.) Thankfully, that has not been the case for me! My longest-lasting treatment lines came at roughly 3 and 5 years. Highly individual, of course, but with some of the newer meds, things could be changing in that regard.

  • Christene502
    Christene502 Member Posts: 115
    edited April 2019

    NancyHB I have METS it's in my right femur, I had the left hip replaced yrs ago. Scars me in a way since I really don't know the extent of it... I did go for a second opinion at the top cancer center SLOAN, they treated me like cattle. Didn't talk to me at all after waiting over 8 hrs to see the dr. All they did was make an appt to have it biopsied. I was shocked, being no Dr at Sloan discussed this with me... So never went back, even though everything was 100% covered by my ins.

    My oncologist and breast surgeon put me on Ibrance and Letz. and did the wait and see... Months later scans showed my tumors decreased in size in by breast. They haven't mentioned another bone scan... I will mention it next visit.

    Both my drs want me to have BMX, get rid of the primary tumor. After that radiation... I have to find out if they will do my femur as well.

  • Bestbird
    Bestbird Member Posts: 2,818
    edited April 2019

    elise24601, I'm sorry to hear about your diagnosis but am glad you found this site. As a quick aside, with bone metastasis you should also be on a bone-directed therapy such as Xgeva or Zometa.

    As SandiBeach said, since your cancer is oligometastatic (one to few lesions, generally in a single organ) it may be possible to treat you with curative intent. Below is a study from my book, "The Insider's Guide to Metastatic Breast Cancer." You can obtain the Guide in eBook or paperback formats on Amazon at https://www.amazon.com/Insiders-Guide-Metastatic-Breast-Cancer/dp/179586060X or send me an email at bestbird@hotmail.com to obtain a complimentary .pdf

    One interesting study involved patients in which a single organ or 2 organs were involved.In those cases where effects of systemic therapy, possibly in combination with other treatments, were evaluated, a Complete Response (CR) or Partial Response (PR) was achieved in 48.5% or 47.1% of cases respectively, with an outstanding overall response rate of 95.6%. Medians estimated were: Overall Survival (OS) of 185.0-months, and relapse-free interval (RFI) of 48.0-months.Three cases (4%) survived for their lifetime without relapse after achieving NED, the definition of clinical cure. This study indicates that OM is a distinct group of patients with long-term prognosis superior to MBC, with reasonable provability for clinical cure. From: http://www.ncbi.nlm.nih.gov/pubmed/22532161

    About the order of endocrine therapies, this is from my book relative to postmenopausal patients:

    FDA-Approved First Line Hormonal Treatment Options in the US (depending upon what, if any, recent treatments the patient may have had in the adjuvant setting):

    • Letrozole alone
    • Arimidex alone
    • Aromasin alone
    • Faslodex alone
    • Faslodex and Kisqali
    • Letrozole and Verzenio
    • Letrozole and Ibrance
    • Letrozole and Kisqali
    • Arimidex and Verzenio
    • Arimidex and Ibrance
    • Arimidex and Kisqali
    • Aromasin and Verzenio
    • Aromasin and Ibrance
    • Aromasin and Kisqali
    • Tamoxifen or Fareston (rarely used as a first-line therapy)Framework for FDA-approved first-line therapies in the US:

    At a presentation delivered in April 2019 by Medical Oncologist Dr. Neil Vasan of Memorial Sloan Kettering, the following first-line therapy is suggested for patients who had previously been diagnosed with early stage breast cancer.

    1. If the patient's "disease-free interval" (the amount of time since the patient completed adjuvant endocrine therapy for their earlier-stage disease) has been more than 1 year, use an aromatase inhibitor alone, or an aromatase inhibitor combined with a CDK4/6 inhibitor
    2. If the patient's disease-free interval has been less than 1 year, use Faslodex alone, or Faslodex combined with Kisqali

    FDA-Approved Second Line Hormonal Treatment Options in the US (depending upon prior treatment):

    • Letrozole alone
    • Arimidex alone
    • Aromasin alone
    • Aromasin and Afinitor
    • Faslodex alone
    • Faslodex and Verzenio
    • Faslodex and Kisqali
    • Faslodex and Ibrance
    • Tamoxifen or Fareston (rarely used as a second-line therapy)
    • Verzenio alone if the patient already underwent endocrine therapy AND chemotherapy that failed.(Although Verzenio is a CDK4/6 inhibitor and not specifically a hormonal therapy, it is listed here for ease of reference).

    FDA-Approved Third Line Hormonal Treatment Options in the US (depending upon prior treatments):

    • Possibly any of the above therapies (although not all combinations are widely used in a third-line setting)
    • Tamoxifen or Fareston

    FDA-Approved Fourth Line Hormonal Treatment Options in the US (depending upon prior treatments):

    • Possibly any of the above therapies (although not all combinations are widely used in a fourth-line setting)
    • Either Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)


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