Progression ... again.

"Le sigh" ... as one of my co-workers says. It always cracks me up when I see it too. I don't know why, but I'll take the smiles it brings all the same. So yep - you inferred correctly - I'm still working. I'm still going about my life in every normal way possible - wife, mom, employee, daughter, sister, friend - awesomeness. We're coming up on two years here pretty soon and thus far, adding cancer patient to my list of "normal life" roles - I'll be honest - isn't any easier now than it was last year. I'm not going to lie. It's pretty much just as hard as it was when we first got the diagnosis ... I'm just less sensitive to it now ... maybe ... depends on the day. MOST days ... I'm less sensitive to it. And then there are those other days ... the days when the stress of an upcoming scan boils over and it's freakin' def com 5, everyone is on tilt ... I'm on mommy over-drive and I'm severely impatient because well hell ... my plate is more full those days and rightly so. We are a little more disorganized and a little more easily stressed and it is what it is those days.

But we roll with it ... and we keep going because what else am I going to do? Certainly not spend my days in a puddle of tears if I can help it. Don't get me wrong - I have my puddles ... I just try to keep them small and infrequent, when I can. But I do notice that, as a result of this diagnosis and every twist and turn of this scariest roller coaster ever, I laugh easier and deeper, I hug longer and harder, I play bigger and more free ... I am more present in each and every moment than I've ever been. My heart overflows faster with every glance at my boys and I appreciate my husband and my mother and my sister and my family and my friends much more deeply ... and I think about those in my life that I have been lucky enough to call friends much more often than before. Everything is just that much more intense the more I experience from this path.

The "average" lifespan of a person diagnosed with metastatic breast cancer is 33 MONTHS. I'm approaching 24 months this month. Happy New Year to me ... ?

What does someone make of this kind of data? I'm a facts, mixed with credible (non-hyperbole) anecdotal, evidence kinda girl. I want to know what's happened in the past so I can analyze it and see how it applies to me, how I can learn from the experience and potentially avoid any pitfalls ... (but I was seriously terrible at history in school so ... there's that). Years upon years of data analyzed down yields 33 months as the average. Am I saying I believe that I've only got 9 months left? No. I am certainly NOT saying that - NOR have my doctors. However, it's not out of the realm of possibility certainly. Probability is something else entirely - something we just don't know unfortunately.

My most recent scans just after Thanksgiving showed progression again. This time a new 5 cm x 3 cm spot in my liver as well as the existing spots in my right lung are becoming active again, but have only increased minimally in size at the time of the scan. This is considered my 3rd progression in under 2 years. Not necessarily a good thing to be honest. There's about 4-5 of them in there, all around 1 cm or smaller each.

If you want to know data ... my first line of treatment in 2016 lasted about 11-12 months. In clinical trials, that same treatment averaged 24 months before the patients experienced progression. So yes - I was "supposed" to get almost 2 years out of my first treatment, and instead I got half that. I am now looking for my 4th treatment in under two years. As Mike would say ... there's what's "supposed" to happen, and then there's what "actually" happens.

So what does this all mean?

It means I had a biopsy a few weeks back on the new liver lesion because - if you remember, there were two different colonies (types) of breast cancer cells taking up residence in my liver. And since there was no way to know which colony generated this new lesion, I had to have a biopsy again. So we did. It went better for me emotionally this time since I knew what to expect. The results showed that this colony is estrogen positive (99%) and progesterone positive (99%) and Her2 protein negative ... meaning this colony is gobbling up what little estrogen and progesterone that my body may still be producing and using it to grow. Additionally - I tried to have a big fancy genomic sequencing test done on this liver biopsy sample. The test is called "GPS Cancer" by Nanthealth and is supposed to be very thorough, however I recently got word that the biopsy sample was insufficient (not enough tissue), so they didn't do the test. Aside from that, I also had another genomic test (called Guardant360) done from a liquid (blood) biopsy. Since it's blood, it's supposed to capture a more holistic picture of the mutations based on circulating tumor cells (CTCs). (And yeah ... I just saw my EOBs on that bad boy, and I'm anticipating a pretty hefty, couple thousand dollar co-pay.)

BUT! as Mike asked - was it worth it? To me ... yeah. I'm an information seeker when it comes to this stuff. The more I know, the more empowered/validated/confident/fill in the blank I feel. In this case, the results came back with some interesting info, a bunch of clinical trials as well as a bunch of stuff science can't do anything with yet. However - it did enlighten and confirm some things. First, it claimed there exists a mutation that indicates the aromatase inhibitor I used as part of my first-line treatment would be not as effective. This somewhat helped me understand why I only got 12 months instead of 24 (can't for sure say it was the AI though because there were 2 meds in combo), and helped me understand why I was still measuring for estrogen even when ovarian suppressed and helped confirm my decision to have my ovaries removed. So that was nice to know, even if still a little fuzzy. Second, it outlined some mutations that help confirm the treatment path that I recently chose as my current line - abemacicilb, faslodex and herceptin - and helped both me and my oncologist feel more optimistic about this treatment combo.

Is this information worth the hefty co-pay? We'll find out I guess.

So where are we now? You're just going to have to bear with me as this post gets just a little bit lengthier. I haven't posted since October. It's January. I'm write a lot. Whatever.

So right now - we're pursuing another anti-hormone aka endocrine strategy, being that the liver was highly ER/PR+, Her2-, combined with targeted therapy. The meds for this are faslodex, a selective estrogen receptor modulator, and abemaciclib, a CDK4/6 inhibitor. I'm still sticking with Herceptin as well, to keep any rogue Her2+ cells from gaining any ground. It's a three-pronged approach, a little out of the box, not really tested all together that much, and not widely used by my own oncologist. My friend - who also happens to have BC mets, sees my same doctors, and also has two, cute, tiny boys - she and I try to push our shared doc, as much as we can, out of her comfort zone. My friend also happens to be on this combo, we think she was actually the first one our doc put on this combo (after some pressure), and has recently found out she's doing extremely well on it.

Faslodex is 2 injections, once a month, in the glutes. Big needles. Highly viscous liquid that says right on the box: "warming the medication helps with administration. Injections should be administered slowly, over the course of 1-2 minutes for each injection due to viscosity." So yeah. I've had 2 injections so far during the loading phase (every two weeks for the first 3 sets of injections). In 2 more weeks I'll get another set of injections and then be on the once a month schedule. Side effects are kinda standard menopausal type side effects - hot flashes, night sweats, etc. Thus far however, I'm only experiencing a resurgence of mild hot flashes. Not too bad.

Abemaciclib is similar to Ibrance (palbociclib), which I was on as first-line in 2016. Abema is supposed to be the "better CDK4/6 inhibitor" as well as have some percolation across the blood brain barrier. It showed well in trials when combined with faslodex and when combined with Herceptin, each separately. It's an oral pill, taken every day, twice a day, without any breaks. It causes low blood counts and upset tummy however, so may need adjusting, depending on how things go.

Herceptin is the targeted therapy for Her2+ specifically. My doc says this one doesn't ever really "go away" ... even if there's progression elsewhere. It's one of those that you try to keep on board for as long as possible. So we keep it. I don't notice anything from this other than a perpetual drip from my nose that just randomly happens when I'm not anticipating it and never have a tissue on hand.

So a three-pronged approach for this treatment line with the hopes that shutting down these pathways simultaneously will be enough to cause the cancer cells to not know what to do and just die. Just die cancer cells ... just die. Or don't ... but just be stable then. No more growing. I'm cool with that too. I can be an awesome host - so long as you don't try to kill me. Cuz then I'll just try to kill you and it all gets really kind of messy. So stable for decades or gone for decades ... either one ... those are the options. 








Comments

  1. ALL THANKS TO DR WILLIAMS WITH HIS HERBAL PORTION I WAS COMPLETELY CURED FROM BREAST CANCER.
    I'm here again to appreciate. DR WILLIAMS God will always continue to bless you more abundantly, for the good works you done in my life, I will always keep on writing good and posting my testimonies about you on the Internet, I’m Jessica from Orlando, Florida. I was tested breast cancer positive, I saw a blog on how DR WILLIAMS cured people with his herbal portion, i did not believe in natural medicine but i just decided to give him a try, I contacted him,and explain my situation to him,few day later he sent me the herb, after taking doc Williams herbal medicine for few week i also got my healing with his herbal portion, i am so happy. If you have any type of cancer problem ,you can contact him on Drwilliams098675@gmail.com for advice and for his product,i hope this testimony also help some one out there .

    ReplyDelete
  2. I read some of your posts, and I'm sorry to hear about your unfortunate situation. I hope that you won't experience any additional met progression for a long time yet. My wife has mets located on her spine, and hip area - and possibly on the lung also (sigh). They are small, but potentially deadly, as you already know. However, don't give up hope - there's a nano-taxane drug being developed that will be superior to Abraxine or Taxotere when it finally gets released. Also, there are immunotherapy drugs, and crisper gene editing, as well as t-cell therapy. Don't pay attention the 33 month lifespan average: it includes old data from 25-30 years ago, and isn't really useful except as a shot in the dark estimate. Also, ER+PR+ cancers are generally more responsive to treatment and containment. Don't lose hope, okay?

    I wish you well :)

    ReplyDelete
  3. As a sign of gratitude for how my wife was saved from CANCER, i decided to reach out to those still suffering from this.
    My wife suffered cancer in the year 2013 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of abnormal vaginal bleeding, and she always have pain during sexual intercourse. . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cancer . I never imagined cancer. has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. cancer. has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

    ReplyDelete
  4. My name is Kathleen Engel and I am an editor at Health Monitor Network in Montvale, NJ. My company publishes guides that are distributed free to patients through doctors' offices. Right now I am working on the next issue of our guide to metastatic breast cancer and, in my research, came across your story and site. I would be honored to feature your story in the next issue of the guide, if you would be willing to be interviewed.

    I messaged you through your FB page, but not sure you were able to access it. If you'll write to me at my work email: KathleenE@healthmonitor.com, I'd be happy to send you a PDF of our last issue, so you can see what our guides look like before deciding.

    Thank you, Melissa. I look forward to hearing from you.

    Best,
    Kathleen Engel

    ReplyDelete
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  6. As a sign of gratitude for how my wife was saved from CANCER, i decided to reach out to those still suffering from this.
    My wife suffered cancer in the year 2013 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of abnormal vaginal bleeding, and she always have pain during sexual intercourse. . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to cancer . I never imagined cancer. has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. cancer. has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony.

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  8. Thanks to Dr Williams I am so happy today, my wife have been suffering from breast cancer for the past 8 years now, and i have spent a lot on western drugs which has all proved abortive, i have tried all means in life to get my wife out of this , but there was no answer until i decided to try herbal solution and i found Dr Williams online and i contacted him and after she took his medication as instructed, my wife is now completely cure from breast cancer within those week of usage, i am so much happy, thanks to Dr Williams for helping me get my wife life back again without any form of crisis, i promise to tell your name and good deeds to the whole world,if you have someone with cancer you can email him on drwilliams098675@gmail.com for more information .

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  9. I am Sophie from Canada, I once suffered from a terrible and Chronic breast cancer ,since 30years now , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs shelley on how his husband was been cured from colon cancer through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help

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