Any ways to predict who responds to treatment and who doesn't ?

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elise24601
elise24601 Member Posts: 155

Something I've learned about MBC is that there seems to be a huge variety of patient experience and outcome.

For instance, some women seem to blow through treatments quickly and die within a year or two. Many others stay stable for years without changing treatments, and tolerate the meds well. Others last even longer, but will take many different med combos and switches to get there.

Besides the obvious factors like tumor receptors and location of mets (bone only vs organ), is there any pattern or rhyme or reason to this? Any way to predict who will end up in liver failure in 5 months vs who will get 5 years out of Ibrance or whatever? Does the initial tumor burden (size/number of mets?) have anything to do with this?

It just seems so random, and that's hard for me to process as a newly Stage IV patient - mostly because, at my young age (34) I can't really live "one day at a time" - I want a sense of what the next few years will look like, in terms of making career and relationship and housing decisions. There are things that only make sense to do (adopt a pet, start a creative project, move to a new city, break up with someone and date again, etc) if I have some sort of handle on my projected lifespan.

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

    Elise, You nailed it, we have to live our lives like trapeze artists working without a safety net. Because you are so young, your body is stronger and your immune system healthier than older patients . Not only can we not predict the cancer, but our doctors are highly variable in how they treat the disease and are aware of new treatments, so getting second opinions and figuring out what we want to try in clinical trials is a must. A cure or functional equivalent could be just around the corner. The docs say the patients who do the best dealing with this diagnosis are the ones who are naturally sanguine (I had to look up what that means- to be optomistic or confident, despite apparently dire circumstances) so perhaps you can assume you won't have problems in the early going, and that the later parts of it will be worked out by the time you get there, and jump back into your wonderful life!

  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited April 2019

    Short answer: No.

    Longer answer: Not yet, but analysis of tumor genetic profiles is ongoing, and when enough data is compiled, maybe we'll have a shot at figuring out who will really respond to what, for reals.

    Disease volume doesn't seem to be an indicator of prognosis. A couple of years in, you might start to get an idea of what kind of responder you are. I'm one of those that seems to respond to most chemotherapies, but they only last about 13 months. I don't respond to anti-hormonals, except for Faslodex, which has a unique SERD mechanism.

    No one has a guarantee on projected lifespan. Stay as healthy and strong as you can, because new therapies may change our year allotment. Go, live your life fully. Get a critter, have tons of sex - maybe even fall in love, move, travel, explore.

    Jennifer

  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited April 2019

    elise, first of all I want to say it sucks that you are dealing with mbc at such a young age. I was 53 at diagnosis and tho it's hard, I feel it's rougher on you younger women.

    Like you, I spent some time, a lot actually, searching for answers about how to move forward with my life. I came across a definition that's helped me and maybe it can give you some insight: “The opposite of uncertainty isn't certainty, it's open-mindedness."

    Try to be open to what will come into your life. Move forward with a few things on your list: get that pet, start that project, buy a new car, etc. Then, move forward with a few more things and so on. You will probably find yourself getting more comfortable doing these things as you go along. There are women on these boards who, after an mbc diagnosis, have moved to a new house, built a new house, started dating, planned vacation trips a year in advance and more. Allow yourself to live. In fact, live more fully. Our lives don't have to be tied up in a neat little bow when it's our time to go.

    I also recommend a couple books: Radical Reemission by Dr. Kelly Turner and Mind Over Medicine by Lissa Rankin, M.D. These, too, will give you insight on how people faced with serious illnesses chose to continue living their lives and doing so on a more meaningful level.



  • jensgotthis
    jensgotthis Member Posts: 937
    edited April 2019

    Elise,

    With Ibrance it seems that responders seem to sort themselves out within the first 6 months, based on stories shared on the Ibrance thread. It sure would be helpful if there was something more definitive.

    As to the other part of your post, all I can share is the motto I now live: "Do not put your happiness on hold." And it's a motto I now tell everyone who asks "how do you do it", meaning living with this dx. Really, there's never a perfect time for anything, or enough money, etc... So, don't wait.

    I was dx MBC de novo at 41 (almost 42). I'd just recently separated from my husband and had a 5 year old at home. Despite some really rough days, I can honestly say that I'm happier now than any other time during my adult years. I definitely worry, but I know I'd rather have 5 years of happy living with MBC, than 15 years feeling terrible. That said, I do try to get through some things on my bucket list while I still feel very good, because the realist in me knows that days will come when I no longer can do it.

    I've spent some time trying to think through/plan out/plan for how I will work, as I had been working F/T since dx and was becoming overwhelmed by fatigue. So, I took the next step of partial disability, and will take the step after that when my guts tells me to. I plan for travel in advance (because I love it so much and it really gives me something to look forward to) and I'm currently saving up to spend a few weeks abroad next fall.

    Circling back to what you were really asking - I recall there is a chart that gives some stats for longer term survival once you reach 3 years, then 5 years, etc...it basically shows that your chances for living longer go up as the number of years you have MBC increase. Maybe someone here has that chart handy? I've poked around and can't come across yet.


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



    Elise, I think you may be referring to the "Conditional Survival" statistics in my book, "The Insider's Guide to Metastatic Breast Cancer" which covers the disease, its treatments, side effect mitigation, and cutting edge research.  I've pasted the chapter below.  The Guide is available on Amazon in eBook and paperback formats at:   https://www.amazon.com/Insiders-Guide-Metastatic-Breast-Cancer/dp/179586060X  and I offer a complimentary .pdf in response to requests send to bestbird@hotmail.com    And I think the statistics today would be even better, given the improvements in therapies!

    A diagnosis of breast cancer – especially metastatic
    breast cancer – can be highly discouraging and challenging to deal with.  But it must be remembered that more therapies
    are becoming available regularly, as are new clinical trials.  Maintaining optimal health under the
    circumstances is important not just for well-being, but for surviving long
    enough to take advantage of potential new and effective treatments.  And the good news is that the longer a person
    lives with metastatic breast cancer, the longer he or she is likely to live!
    This concept, called “Conditional Survival,” is based upon a 2010 statistical
    analysis of huge numbers of patients in the SEER database.  The following percentages are probabilities
    of five years of relative survival (taking into account breast cancer-specific
    survival and setting aside other causes of death) for different time periods
    following a diagnosis with metastatic breast cancer.

    At 0 years (i.e. when
    first diagnosed with MBC), the probability of five MORE years of relative
    survival is 25.3%

    At 1 year already
    survived MBC, the probability of five MORE years of relative survival is 32.4%

    At 2 years already
    survived MBC, the probability of five MORE years of relative survival is 39.1%

    At 3 years already
    survived MBC, the probability of five MORE years of relative survival is 45.5%

    At 4 years already
    survived MBC, the probability of five MORE years of relative survival is 52.0%

    At 5 years already
    survived MBC, the probability of five MORE years of relative survival is 56.9%

    From: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228022/table/T2/  (Look under “Distant” and “Breast Cancer”).

    A more recent study of conditional survival in breast
    cancer data from SEER examined cases that were diagnosed during 2000-2008 and
    followed up through 2013.  Specific to
    distant breast cancer disease, the analysis indicated that five-year relative
    survival was 30%, and that the improvement in 5-year relative survival from
    diagnosis to five years already survived for distant disease was 91.4%.  From:
    https://www.omicsonline.org/conference-proceedings/2161-1165-C1-016-001.pdf

    However,
    the SEER database only records “de novo” MBC patients (those who present with
    metastatic breast cancer at initial diagnosis) as opposed to patients who
    initially had early stage breast cancer and later recurred.  For example, a patient who initially had
    Stage 1 breast cancer is recorded as a Stage 1 breast cancer patient in SEER,
    but if s/he recurs, SEER is not updated to reflect the patient’s MBC status.  Hence the logical question with respect to
    Conditional Survival is whether the SEER statistics above apply to recurrent
    MBC patients.  Although the author cannot
    definitively provide an answer, one particular study of 815 patients studied
    from 2007 – 2009 in eight hospitals in the Netherlands provides some
    interesting data regarding this question. 
    In the study, patients were subdivided into 3 groups: de novo, patients
    who recurred in < 24 months, and patients who recurred in > 24 months.  The study concluded that patients with de
    novo metastatic breast cancer had a significantly better outcome when compared
    with patients who recurred in < 24 months, but when they were compared with
    patients who recurred in > 24 months, the outcomes were similar.  From:
    https://www.ncbi.nlm.nih.gov/pubmed/25880008
  • pajim
    pajim Member Posts: 2,785
    edited April 2019

    Elise, I agree with everything written above. x2. There's also a whole lotta luck involved.

    There are some 'chemo-sensitivity' tests which can be done to, in theory, figure out what drugs someone's cancer will respond to, but it hasn't made it mainstream, mainly because some people respond to drugs that by testing they weren't susceptible to. Not to mention that the cancer mutates all the time. If it didn't we'd all be on our first treatments.

    So the answer is, as blainejennifer says, no.

    But. We're back to luck again. I believe the same as Blainejennifer. You'll find out over time if you're a responder. I consider myself one -- I seem to get a year+ out of every treatment. And when my cancer grows, it grows slowly. But it does grow. We have women on these boards whose cancer doesn't seem to grow at all. And some who can't find a treatment that works.

    Hang in there. Time will tell. One thing is for certain. I'm not going to die this year (unless some disaster happens). Not next year either. Neither are you. You'll have warning. In the meantime, live your life like you expect to be alive in five years.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2019

    Elise, enjoy life now however long you live!

    In my first year I looked ahead to two, then as I passed that hump I let myself believe that the probability was greater the longer I lived that I was going farther to the right of the extended tail of the survival distribution curve. Now I am an outlier. You can be, too.

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