End of clinical trial with GDC-0032 + Faslodex, CT results

December 18th, 2013 § 103 comments

IMG_7814“This one has to work,” she says, “It just has to.”

These are the words my phlebotomist says to me every time I see her. She says it strongly, willing it to be so.

I wish it were that easy. If wanting it could make it so… all of the people who send their support in prayers, thoughts, hopes, vibes, whatever it is they hope will help… all of those would work. And yet, here we are. Through no fault of theirs, or mine.

It is important to see the larger picture here, aside from my own life. It is important for everyone reading this blogpost to know that despite all of the hype and exclamation points and strong language about a cure or the promise of successful long-term targeted agents for metastatic breast cancer so that it can be more like a “chronic disease,” we are not there yet. The number who can live like that are the minority. Most live in this life and death game of Whack-a-Mole that I do now: metastases (“mets”) pop up, and you try to bash them back down but as you do they pop up somewhere else.

The state of metastatic breast cancer care is that you can’t just test your breast cancer, look on a chart to find the drug that will work and always shut it down. Metastatic breast cancer has eluded this formula so far. We don’t have drugs yet to even target every mutation. And we don’t know which inhibitors work. Most work best in combination with other treatments and we have to have clinical trials to test all of those options. All of those things take something those of us living with MBC don’t necessarily have: the luxury of time. In my case, I have a type of mutation called Pi3k-alpha in my cancer. I took an investigational drug that was a Pi3k-alpha inhibitor (along with another drug). On paper it should have worked. It was the most advanced type of targeted treatment I could get for that mutation.

Cancer is complicated. It has multiple pathways to get fuel. Block one? It finds another. And even when you have a drug that shows results in mice or in a few other people, you don’t know if it will work for you. There are too many variables, too many drivers of cancer in complicated feedback loops.

You can see where this is going. I have come out on the wrong end of the equation yet again. The trial drug combination did not work.

I’m no longer continuing on the clinical trial of GDC-0032 and Faslodex that I’ve been on for 8 weeks. The trial is required to drop me and we (my team and I) agree it’s not wise to stay anyway.

My CT scan showed stability in my disease in the bones, lymph nodes and lung nodules. That’s good.

But we have other more serious concerns now. The breathing problems I was having we knew were due to a pleural effusion which initially worsened 6-8 weeks ago and then seemed to improve about a month ago. I have still been aware of breathing issues throughout the day but it hasn’t had too much impact on daily functioning so I have just pushed through.

We now have confirmation that the pleural effusion is larger than in the last scan. The fluid that is causing the trouble is from metastases to the pleura (not to be confused with metastases to the actual lungs, the pleura is the sac that the lungs sit in. They usually have a trace amount of fluid present. This amount is a lot more. The fluid associated with the cancer has settled in the left lower lobe and has displaced the lung upward). In plain terms, there is cancer in the pleura that is producing fluid that builds up in that normally thin sac beyond what can be drained by the normal body process.

Additionally, my liver is now affected as well, unfortunately. There are mulitiple lesions that are metastases as well. This is obviously something I was hoping to avoid for a while longer.

The nature of metastatic breast cancer is that you don’t know how fast things will move or where the cancer cells will settle and thrive. They like the environment of soft tissues (liver, brain, etc.) so these developments are not surprising nor what I want to be hearing.

We need to get aggressive in a new way now. Anti-hormonal agents and inhibitors have not been working for me even though on paper they “should.” Treatments that logically should work might not. And that’s why I get angry when some very visible people in breast cancer care want to keep talking about how “close” we are to personalized treatments and even cures. The research has yet to support that idea. In fact, the latest research has repeatedly shown how complex the interactions are. We now know there are more than 30 subtypes of breast cancer. And even those subtypes don’t always respond alike to treatments.

Cancer is wily. And I hope I’m wrong about how far away we are from true leaps and bounds in MBC care. But I know I won’t see it in my lifetime. For how many decades now have we been hearing about those “breakthroughs” and “miracle drugs”? Yes, they’ve come in some cancers. But not MBC. Reporters and health care professionals in the public eye need to monitor how they spin info about the current state of metastatic breast cancer treatments. Let’s not send the message out about how “close” we are to a cure when there isn’t research to back it up. Let’s not send a falsely reassuring message out there that metastatic breast cancer doesn’t need much attention because soon we’ll be able to make it like a chronic disease anyway. Until we have actually done that, we must push full steam ahead and not encourage complacency in research.

Stepping off my soapbox to come back down to my life, what does that mean for me now? We must choose a new game plan. The one we talked about only days ago doesn’t seem the best option anymore (that’s one reason I don’t take the time to go into my plan B here when it’s still a hypothetical. You always have to be ready to adjust based on new information). We’re huddling and tossing around some options. I should know by Friday when I go back to my last clinic appointment on the trial. In all likelihood I’ll be going to traditional chemotherapy.

For now, it’s hard news to hear, especially at the holidays. I was originally diagnosed with early breast cancer on December 20, 2006. That anniversary approaches. I search for the beauty each day. I make myself find it. I won’t give up these days even when they are so hard. Today as I drove the kids to school the full moon sat above the horizon. It was beautiful in the blue sky after our gray day of snow and rain yesterday. We all looked at it. And I was glad to be able to see it with them.

As many of you already know, my first tweet of each day is a mantra I’ve written: “Find a bit of beauty in the world today. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” I love to start my day with that saying each morning. It centers me. And so many have responded that they like it too.

This news is not good. But as always, I go forward. As I’ve written elsewhere:

Cellular biology is King,
But paired to that fateful ruler I shall be a rebellious, argumentative Queen.

……………………..

One side note: with the popularity of my Twitter feed and the New York Times feature, my volume of email has soared in the past few months. I get so much mail, often with long stories and also requests for advice and guidance about cancer treatment and coping. I am so sorry to say that I cannot always respond to these letters. I hope everyone understands this. I am flattered but the time it takes to fully respond would be like writing a blogpost to each person. If the requests are easy, I try to answer as many as I can. I read every email that comes in and every comment on the blogposts. Any answers to emails come only from me. So I just am hoping that everyone understands that during these turbulent times, I won’t be able to reply to individual requests for advice and care. Thank you for understanding.

 

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§ 103 Responses to End of clinical trial with GDC-0032 + Faslodex, CT results"

  • Diane D'Angelo says:

    So upset by this news. Sending love to you and looking forward to hearing what the next steps will be.

  • I’m so fucking sorry–for all of it. I wish there were a more elegant way to say that, but it’s the best I can do.

    You are always in my thoughts.

  • Well, what can one say to news like this… nothing seems adequate and yet saying nothing seems a sin.

    You’re always in my thoughts, Lisa. Everyday I see something lovely and I think, “I hope Lisa sees something as lovely as this!”

    Thank you for sharing and being the constant educator.
    I’m so sorry this is your world and the world for far too many. So very sorry.
    xoxo
    P

  • Sara says:

    Shit. I’m sorry, Lisa. Will think of you as I look for beauty today and everyday. Xo

  • Vicki says:

    “Amazing Grace”

  • Ellen M says:

    Lisa, dear. I think of you every day. Your mantra is something I try to do and I thank you for putting it in my consciousness.

    I am sorry beyond words about the end of this trial and the complicated road to finding a next course of treatment.

    xoxox
    Ellen

  • Paula DiPaolo says:

    So sorry …I am just starting this mess with stage 2 like you did in ’06 and your lil mantra starts my day now too…thank you for being so real and I believe your posts on the medical info should be required reading for all of us…every word you write matters so…

  • sue says:

    Bugger. Just. Buggerit.

    I work with words day in and day out but this is clearly one of those occasions where words just aren’t enough. I’m so sorry that the trial didn’t work for you. You’re so right when you compare metastasis to a game of ‘whack-a-mole’. It’s easy to believe that cancer has a mind of its own. I hate what it does to people, families, lives.

    Here’s to the next step. I hope beyond hope that it buys you plenty of time.

    Thank you, as always, for your honesty and eloquence and for reminding us all that life is to be lived and appreciated one day at a time.

    Huge hugs.
    xxx

  • Susan says:

    So sorry. Thinking of you every day.

  • NS says:

    Lisa,
    I appreciate that you have the strength to keep us updated and included in your life.
    Sad and tears in my eyes to think that you are enduring so much. I can’t say anymore…

  • Mir_B says:

    Thank you for continuing to communicate as you deal with this. I am so sorry it has to be so hard.

  • Wendi says:

    You are a wonder and a treasure, Lisa.

  • Teresa says:

    Like Jacquie and Sara, the words that come to mind immediately are, “Fuck, shit!” I’m sorry you recieved the results that you got. It’s so fucking unfair. There I go again with the profanity, sorry! I look for beauty every day and think of you. I squeeze my kids and husband tighter and think of you. You are always in my thoughts. Sending you as much love and as many virtual hugs as I can through this post. xoxo. Ter

  • Sandy Greenstreet says:

    Damn! Lisa, you have such strength, openness and eloquence as you take this journey. I continue to pray and send good thoughts your way. Just know that all of us are sending you strength and love. Hugs!

  • Karen Carter says:

    Hugs from Denver, Lisa. xo

  • Joann says:

    Shit! This is upsetting for all of us who know you. I think your info should be on the front page of the NYT because so many people think that we are near a cure for all kinds of cancer. That is a BIG FAT lie! And the kind of cancer I have….so little research that it is laughable.

    When my mom was dying of breast cancer, I remember the pronouncement of a “cure” on the front cover of every paper and magazine. This was 30 years ago and the cure was Interferon. Remember that? And today’s “cures” for most cancers, not just MBC, are just as pitiful. All hype, no substance.

    Unfortunately, we can do nothing but hope.

    Keeping you close in my heart.

    Love, JoAnn

  • Marisa says:

    Very tough news, Lisa. Because of you, I look for beauty every day now, even when some days it’s hard to find. Because of you my dog gets her treatment on the first of every month. So many other things because of you. Thank you.

    Adding my thoughts of strength to all the others that are headed your way.

  • Mona says:

    Thank you. Thank you again for sharing and thank you for everything you do. I am thinking of you and grateful for your posts and tweets.

  • lisa says:

    Last night I found myself worrying about two things: whether the appointment my manager had scheduled with me this morning was to discuss layoffs on the website where I work, and your CAT scans results. I found myself preferring bad news for me than for you because through your writing I’ve come to root for you as well as to be able to better put my own issues in perspective. And though I know that telling youhelps you in no tangible way I did want to offer that your legacy and example will always shine into so many of our lives.

  • susan says:

    Lisa:
    As others have already said, I can only think “Fuck!” I feel so god damn mad about this for you. I am angry at the bullshit we’re being fed about breast cancer. I am really so so sick of those media stories (the People magazine cover story a few weeks back about the journalist “saved” by her mammogram nearly had me tossing it across the supermarket line I was standing in.) I am angry at people with their bullshit “cures”, their positive thinking and all that other ridiculousness that is spewed to both keep the illness away from THEM while “blaming” somehow the one WHO SIMPLY HAD THE BIOLOGY GLITCH!

    And, of course, as a mother myself and a person who lost a parent at a young age, I just feel so sad. I want to FIX this for you somehow. But I know I can’t.

    So, instead, I am going to go to your site at MMSK to donate some money for research. I am going to hug my daughter especially hard this afternoon when I get her from school. I am going to take care of myself as best I can. And I will continue to be moved and awed and grateful for your openness is showing the world what this really looks like. I wish there were much much more that I could do.

    Sending you love.

    Susan

  • Pepper Blais says:

    Hi Lisa, Just wanted to send a quick message. Thank you so much for your blog! I have learned so much about our disease because of you and the time you take to write and share your experiences on your blog! Thank you! I wrote down your quote today and posted it on my fridge! I will also be starting a new treatment next week, since the cancer has found a way to get around my hormone blocking medication! Best of luck to you and thank you again.

  • Erin says:

    Oh, Lisa…I have no words. Except that as you continue to be a rebellious and beautiful queen, you have a court that loves you dearly and is so grateful for your amazing strength.

  • Pat Milburn ( grannyuser) says:

    Beyond dismayed. Wishing you strength in your journey.

  • Brenda hattom says:

    This breaks my heart, Lisa

  • Nancy Kelley says:

    Damn, oh dammit. I am so sorry.

  • Dorothy says:

    I am so damn sorry to read this. It just truly sucks. You are such a strong inspirational woman. I know life isn’t fair but sometimes the unfairness is just too much. I think of you often and send thoughts your way.

  • Karen says:

    I’m just one of the thousands who are mostly silent, but closely following you and holding you and your family in our hearts. And I do take your advice to seek and create beauty every day – you are making a difference in the world. Hugs, love and peace to you, Karen

  • I love your blog, Lisa, because you are so grounded in reality. I know that I will never get bullshit from you. You not only educate me about MBC, but you show me a way to deal with it honestly. I thank you from the bottom of my heart. As far as I know, no one else out there is speaking about mBC as clearly as you are.

    I was diagnosed Stage IV about the same time as you (September 2012) and recently had a spread to my brain. I have an appointment with a doctor in Boston who specializes in HER2+ cancer that has spread to the brain for her recommendations for treatment options. As I go along I’m still realizing that there is still no “right answer” or “cure” for me. The dance that one does with King Cancer is very unique to each patient.

  • My heart is heavy for you today, Lisa. This stinks. It just does.

    Do you realize how amazing it is that you wrap this scan news is a plea for caution about cancer-cure hype, a plea meant to help others? It IS amazing; even right now, even struggling with your news, you find and convey the larger message. Thank you for that. It’s one of your gifts.

    Our bond is long-distance, but I find myself caring so very much as each development occurs. I’m holding you and your family in my thoughts and I know that you, and they, will find as much beauty in every day as is humanly possible.

    You make the best rebellious Queen ever.

  • Fuck, followed by oh no, are my first thoughts upon reading this. I sometimes do not fathom how you have the strength to write here but you do and so eloquently.

    Hoping that the plan you devise with your team allows you to maintain a quality of life and buys you time. Precious time.

    My will is certainly not enough but I do firmly believe in the power of collective consciousness and even if it did not produce the desired results with this particular clinic trial, you are here, pushing forward, and we, all of us who you’ve touched with your story, are holding you up.

  • Florencia says:

    Lisa, I follow you from South America, so sorry to hear this news, wait for your next steps. The best for you, I trully admire you !

  • Tammy says:

    Thank you for honesty. XO

  • Vicki Sivilli says:

    Lisa,

    Thank you for another amazing post.

    I too had a pleural effusion. Xeloda, which I was on for a while, cleared it up and has not returned, and now Gemzar seems to be keeping my cancer in check (so far). Mets truly is a game of Whack-a-Mole. When I ask my oncologist, “If this stops working, are there other drugs?”, she always says, “Oh yes, there are many, many options.” We’ll see.

    It takes a great deal of mental fortitude to live from CT Scan to CT Scan, just waiting for the next shoe to drop…I for one am running out of feet!

    - Vicki

  • Dee D says:

    Lisa-
    I am so sorry to hear this. My heart breaks for you and your amazing family. I wish I could wave a magic wand and make it all better. May you continue to find beauty and perservere.
    xoxoxo

  • Karen S. says:

    Dear Lisa,
    I just wanted to write to you; as you and I have the same breast cancer oncologist at
    Sloan Kettering. I wish you all the best and hope that the next treatment is the one
    that will help you. I wish you and your family a Happy and Healthy New Year.
    Thank you.

  • I reading and following and hoping for you!

  • Sharon says:

    Usually I would be spitting out profanity but today I just can’t do it. Your closing mantra is beautiful and I too use it. I am a faithful, quiet follower and too am so angry with those who talk about cure. There is no cure and they know it. There are too many of us out here just waiting for the shoe to drop and go from NED to MET and it is a nerve wracking game. And so we just live the best we can from one day to the next, hug our loved ones, write our stories and move into another day.
    Sending love Lisa.

  • Rebecca says:

    As soon as I read the title of the post I had tears in my eyes. I am so sorry for you Lisa. I am not one to swear much, but the Fs and the Ds that are being posted by your other readers are in my mind too. What rotten news to get at xmas time.

    I don’t know if your kids are doing any special school performances or anything, but I hope if they are doing them you have the strength to go to the shows and enjoy them. I hope you are making gingerbread houses or Christmas cookies. I hope you are finding strength to spend with them as much as possible during the upcoming school vacation.

    Sending love.

  • Kathleen says:

    Lisa, it never ceases to amaze me at how well you balance educating people and sharing your own story. I am so sorry to hear this news. The timing would never be good, but it does feel especially horrible right now. I’m hoping the extra beautiful surroundings of the season bring some unexpected joy in the midst of the sorrow.

    Thank you for taking the time to speak against the false hope. I hope our culture will soon push against those messages.

  • Elizabeth says:

    I am so sorry to hear this news. Was really hoping that this would do it. I was on Faslodex for five years before it stopped working. Here’s hoping that the next treatment will do the trick.

  • Amy says:

    Just another reader shaking my fist at the sky on your behalf. My struggles have been very different from yours, but your words remind me to find beauty and gratitude in each day. I just wish that magic wands were real…

  • Melinda says:

    So very sorry to hear this, Lisa. Don’t know what else to say that won’t sound trite. I admire you very much!

  • Ellen says:

    You are making such a difference in so many lives. Thank for making a difference in mine. Please know that you are in my prayers.
    Sending you love

  • Beth Gainer says:

    Lisa,

    Was saddened to read this. Sending you love.

  • marcinca says:

    I’m so sad to hear this. Lisa, you have a piece of my heart and always will.

  • Barbara says:

    Dear Lisa,

    I am so sorry that this did not work out for you. Hoping that a successful plan and agent will come your way.

    Best Wishes,

    Barbara Shernoff

  • hushsix says:

    Here you are, responding to absolutely devastating news with logic, reason and facts, but I am sure acres of pain are hidden beneath your wisdom.

    People expect cures for everything these days. The truth is, the treatment for many diseases and conditions are trial and error, and trial by fire for the person suffering. I wish you every good thing as you continue your journey.

  • Pam says:

    Oh, Lisa.

    I’m so sorry you didn’t get a good long respite with these drugs.

    * H U G *

    Thinking of you every day.

  • Leah Wise says:

    Am so sorry to read this latest news, Lisa. You’re in my thoughts every day. Take care.

  • Karuna says:

    It’s hushsix’s words above me here that come closest to my feelings. Thanks, Lisa, you are helping me get my feet on the ground. I also have ++- , have had a lumpectomy, getting my biopsy results this Friday. I’ve been following you for a few weeks. You give me courage, strength, and determination. Thank you. Bless you. My heart goes out to you and yours. Thank you.

  • Ann says:

    I’m so very very sorry. Hugs

  • Sandi Cheuvront says:

    Lisa, I’m so so sorry for the news. I think of you everyday. Sending good thoughts and hugs to you and your family.

  • from Life of Pi – Taken from The Assertive Cancer Patient -Blog of Jeanne Sather
    The quote below describes so many of us with MBC-
    I speak in all modesty as I say this, but I discovered at that moment that I have a fierce will to live. It’s not something evident, in my experience. Some of us give up life with only a resigned sigh. Others fight a little, then lose hope. Still others—and I am one of those—never give up. We fight and fight and fight. We fight no matter the cost of the battle, the losses we take, the improbability of success. We fight to the very end. It’s not a question of courage. It’s something constitutional, an inability to let go. It may be nothing more than life-hungry stupidity.

  • jenn says:

    i have no words, only sorrow.

  • Susan Zager says:

    Lisa I am so sorry about all of this. Thank you for being so honest and sharing all of this. Mets sucks. You are in my thoughts and prayers and I hope the next course starts trending in a positive direction. Hugs and xoxo – Susan

  • denise says:

    I love you.
    LOVE you.
    L.O.V.E. Y.O.U.
    xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo

  • Carolyn says:

    I had no idea just how invested I’d become, but I guess my sobbing right now tells the truth. So many people will learn from you and be comforted by your musings, small comfort now. This is so wrong and unfair! I hold you and your peeps in my heart. Xoxo

  • So very sorry to hear this news, Lisa. Thank you so much for your honesty and forthrightness talking about these crucial issues. Like so many others, I fervently hope your next avenue of Queenly argumentation is successful in the best ways for you and your family. Thinking of you.

  • Linda says:

    Dear sweet Lisa, I am so sorry. You are in my heart and I wish I could put my arms around you and hold you for a bit. I’m comforted that you have a very strong family around you, with many supportive friends. I’m sick that you are having to deal with all of this. With love, Linda

  • Sarah Adams says:

    Oh Lisa, I am so sorry you… I will call you soon…

  • Jenny Stern says:

    So sorry, Lisa. Hope your next round of treatment sends the cancer packing for a long time.
    I appreciate your honesty and how you are ever educating, and being a great mom and wife.
    Jenny

  • Joanna says:

    I’m so sorry. Fuck this disease.

  • I am sorry to hear the news, Lisa. I wish you all the best for Christmas. As you say, we must look for or create beauty each day. I will try to keep that in mind myself.

  • Mary says:

    Be strong, Queen. Your post was the beauty in my day, today.

  • Lisa, my heart goes out to you. I send a ton of love to you and your family. love, Liza

  • Dear Lisa-

    I hope that the love pouring out to you from so many people online is a source of comfort. Like countless others, I am always moved by your grace, generosity of spirit and wise, open heart. Your mantra is a blessing I cherish. Please know you are in my thoughts and prayers.

    Sending more love to you -
    Priscilla

  • john says:

    If 10% of humans had the level of courage you have, the world would be in great shape. I hope to be voting for you for president in the near future.

  • Diane Turner says:

    Dear Lisa,
    I’m so sorry to hear this news. I am humbled by your grace, honesty, and openness. Here’s to the next step and its success. I continue to keep you in my prayers.

  • Hillarie says:

    Your ability to write with clarity in light of the news is amazing. Again, I am so glad you are still blogging and sharing your personal experience. I’m sorry you are forced to find yet another path at a time so many of us kick our heels up and just worry about what’s going under the tree. But as a spouse/caregiver for a metastatic cancer patient, I find tremendous courage and value in your mantra. I have it saved to Evernote so I can look at it whenever I need.

  • anonymous says:

    Bring back your poetry which is what lead me to you in the first place. Enough of the clinical. I used to find insight reading Randy Pausch’s blog until he became obsessed with numbers, scans, and chasing a cure.
    Anything to share from your meeting with the young oncologist’s ?

    • cathy b says:

      Let me say it for Lisa – Sorry to lose you as a reader. I’m sure there are some great poetry blogs out there.

    • Lisa Bonchek Adams says:

      First I would like to remind everyone that support and understanding are always welcomed by those with cancer at difficult times in our lives.

      I’m sorry that you find my reporting tedious. The clinical trial posts have actually been the most widely-read and helpful to the broadest audience. They are vital to those in the health care industry and patients contemplating participation in those trials. I hope you never need to make a decision about enrolling in a trial, but maybe you can be glad there is a resource for you if you ever did need it.

      I write what I can when I can, with no apologies. I have been shown so much support by those who continue to read these posts. Readers who find it’s not for them just quietly stop reading or unsubscribe.

    • Danny D says:

      Bring back the tact, thoughtfulness and compassion. This is the life of Lisa. If she wants to post a top ten list of how to take care of a turtle, she can.

  • Joann says:

    “Chasing a cure”, as anonymous so snarkily and disrespectfully put it, is about all that those of us with cancer can do, proactively.

    And living from one scan to the next is really hard work.

    Hugs,
    JoAnn

  • I have followed you for a long while . I am sad and sorry for your latest news I live 2 comments specifically in you post- the comment about if only all the love and support could change it and your comment about your difficulty breathing hasn’t affected your daily activities too much so you push through- both inspire me in my sadness today. Thank you for taking time to send to the moon with your Precious children.
    With love to you today- everyone must understand what you said about replying to posts and emails I sometimes find it just difficult to type much let’s think about what I’m going to say- i’m glad you said it so others know it’s your desire but not what you can necessarily do. I’m looking for something beautiful in my day.
    Ox persis from way out in mn-

  • D. Sutter says:

    The situation sucks, no doubt about it. I’m right there with you. Continue to appreciate every day. Keep your head up.

    ~D.

    And go ahead and tell anonymous to kiss your ass…

  • I don’t have any words to send. Only loving thoughts. You are remarkable beyond measure.

  • joannefirth says:

    Out of great respect and love for Lisa, I choose my words carefully. This is Lisa’s blog and she writes what she lives. I find everything Lisa writes to be poetic because of the grace her words hold and the beauty of who she is and what she does here. xo

  • anonymous says:

    I did not say your posts were tedious.
    Your own words (in a poem):
    “I don’t want to read reports from the ASCO conference or tweets about new research findings.
    I don’t want to read about mTOR inhibitors or side effects or months of disease-free progression.”

    “There is poetry in the human experience.”

    What you stated below is not true so I do not look to you as an expert:
    “Especially when your cancer is still confined to your bones and lymph nodes, stability has the added feature of being life-saving: as long as the cancer is in those places it cannot kill you. Only once it metastasizes to organs can breast cancer kill.”

    Where did this writer go?

    “I strive in my writing not to always focus on cancer per se. A few of my posts are, in fact, technical updates on my condition. These are the posts I like writing the least. I focus on the emotions of cancer … the disease itself is not usually what’s important. Instead, what I try to focus on are the emotions that accompany these hardships: fear, anger, despair, hope, grief, love.”

    You asked this question once. What is your answer?
    “As an atheist who believes this life is all there is and never prays for nor believes in miracles, I am wondering if/how your religious beliefs have changed as you have come closer to death ?

    Remember this?

    “When I die someday just tell the truth:

    I lived, I died.

    The end.”

    • Lisa Bonchek Adams says:

      here are the answers to your quite aggressively-toned questions:
      Ironically, you missed the poetry in my words. “I do not want to” means I don’t want to HAVE to. I don’t want to have to spend my time doing those things. I’d rather be laughing, playing, worry-free. But I must read them. I must spend time doing it, to stay abreast of research.

      It is absolutely true that breast cancer in your bones alone cannot kill you. It must go to organs. Don’t want to look to me as a medical expert? No problem. But every doctor I know will say I am more versed in my breast cancer than any patient and many physicians they know.

      When my cancer experience required a clinical trial, my commitment to education expanded to include it. I do not like to write those posts because they are draining. But my commitment to educate is central in my mission.

      That question was asked in an interview by me to my friend Jen. I was asking her what HER views were. It wasn’t posed to me.
      So, again, I already said in that question what I think: my answer is that I am an atheist. I have not changed in this. I do not believe in miracles or an afterlife. I do not pray.

      Yes, I remember those last words. I wrote them. They are consistent with what I said above. I asked the question, it was not asked of me.

      If my posts aren’t your cup of tea, feel free to stop reading. But I value those who are reading, respectfully, as I experience what most would agree is one of the most difficult things to go through. Thankfully 99% of readers are generous and kind.

    • Stephanie says:

      My mother always taught me that if you didn’t have anything nice to say, then keep your mouth shut. Might I suggest silence is golden? This is not required reading. If the posts aren’t to your tastes, feel free to find others to read elsewhere, and leave these gems for the rest of us to appreciate. Remember, Silence is golden.

      Lisa-thank you for taking the time to discuss the nuts and bolts of treatments. It is a valuable resource.

  • Brandie says:

    Lisa, thinking of you xoxo

  • Isabelle says:

    I am so, so sorry that the news was not good. I hope that you will find a treatment that is more effective. I am also very sorry that you are having to deal with unkind anonymous comments at a time like this. Thank you for all of the ways that you share your story–you are helping so many of us.

  • Lori says:

    It’s such a shame you have to spend the time and energy defending your writing. I, like many, value your insight, grace, and willingness to let us into your life. Sending love and hugs your way, Lisa.

  • Lisa,

    I will keep this brief. You DID reply to me over a month ago, as I was just dx with “just DCIS Grade 3″, ER/PR-, HER status unknown because they “don’t test DCIS for that”. Your story and email encouraged me to get a 2nd path opinion post MX, which has simply proven the bumbling mess of our medical system (I am a nurse of 25 years, no shocker..) please know how much you helped me and so many others in empowering oursleves to be SURE of our dx..and treatment. They messed mine up by sending out my bx slides, not my post MX..thank you and prayers to you and your family. You are a very strong, beautiul and grace filled woman. Thank you for being there for ME. Thank you…

  • DrAttai says:

    Much love to you, Lisa

  • pattya says:

    Dear Anonymous,

    I shudder to give you anymore air time . In my life I have found that people who are “anonymous “lack courage and/or a sense of purpose –hence the title they use. Moreover people that stand in judgment of others reflect the worst of humanity and God (I happen to believe ) so I will pray for you.

    Please give us all a Christmas gift and just go away. Thanks in advance.

  • Sue says:

    Dear Lisa

    I follow your blog from a small village in the south of France where I now live. We have never met but I wish I could have had someone like you as a friend. You are very courageous in the face of adversity. I’m full of admiration and thanks for your sharing. All the best.

  • Kirsty Aversa says:

    As a breast cancer patient myself, I am like a sponge absorbing all that you, Lisa, have to say. You write succinctly and with such honesty. I find myself crossing my fingers for you that you will become “stable mabel” and was so disappointed and upset when I read this last post. I wish you better things to come for the future and now both my fingers and toes are crossed! You are a truly courageous woman filled with such grace. I will continue to keep you and your family in my thoughts! Thank you for sharing your incredible walk through life. I pray you, as the argumentative queen, continue to hold King Biology back for many years to come. (With respect to anonymous, find yourself another blog to focus on …. this one is not for you!

  • Pam says:

    Here’s a tip for anonymous (albeit not the one I initially thought to give)–if you don’t like clinical posts, don’t read the ones with “clinical” in the title.

    Duh.

    Lisa–you know you are doing amazing work with your blog. We are awed by it & we are so grateful. (Signed, your non-anonymous readers)

  • Helen Burmaster says:

    Lisa,
    I read your blog off and on ( along with those of the #bcsm group ). Your resilience and strength power me and I am sure many others as we face the uncertainties of breast cancer. I agree wholeheartedly that we need to keep pushing researchers further to address MBC.
    I hope and pray whatever course of treatment is ultimately chosen now, it allows you many more years of quality time with family. Always sending love and prayers your way…
    Helen

  • Ann says:

    Holding you in my heart always.

  • Oh, Lisa. Here’s one more person you don’t know, except through Twitter & your blog, to tell you that you are in my heart and thoughts. Hoping that you’re able to feel how much love surrounds you & your family.

  • Dee Anne says:

    Yes I agree, you are a ” rebellious, argumentative Queen” – and that Lisa, is why you are so well loved and respected. As always, I am sending you much love, hugs and healing juju! xoxo, ~Dee Anne

  • Diane says:

    Lisa, I too have been quietly following your blog and have been thinking of you often since I read this two days ago. What you’re going through and how gracefully you’re dealing with it has affected me deeply. I’m certain it will make me a better person—more grateful, compassionate, knowledgeable and better able to deal with adversity. Just know there are many people rooting for you and hoping for the best for you.

  • Karen S. says:

    Good night Lisa, I wish you and your family a Happy Christmas; I am thinking of you and
    wishing you all the best. Karen S.

  • Susan says:

    Sitting here wishing I was reading different news, Lisa, but as always in awe of your thoughtfulness and your commitment to educating others with your story….wishing you well as you move into the next steps with your treatment team.

  • Jennifer pascall says:

    Holding you close from far away in south Africa Lisa…

    People like anonymous are a waste of energy…
    fortunately there are far far more warm and loving people around …

    Know your worth…and how much people appreciate and care about you

  • Cheryl says:

    Whack A Mole — this was a term my husband used recently referring to his body and cancer mets. It describes it perfectly in so many ways. When I read those words, it prompted me to write. The mets went to his liver also. We failed our 2nd clinical trial too. We also have young children. Coincidentally, we are with you.

  • […] out on the wrong end of the equation again. The trial drug combination didn’t work.” Heartbreaking post from Lisa Adams about the reality for people with metastatic breast […]

  • Jeanne Gustafson says:

    Lisa, I’m a friend of Jamey Murphy’s. I’m so sorry to read your news. My breast cancer had a happy ending and I wish the clinical trials I did would have prevented yours.
    Thank you for your brilliant writing and your obvious courage. You’re an inspiration. My mother was a force of positive thinking, too. She told me that each day we have a choice to be happy or not. She had incredible tragedies but always chose to be happy. Good for you for choosing a mantra of seeing the beauty around you. Your children are blessed to have you as their model.

  • Jeanne Gustafson says:

    Lisa, I’m a friend of Jamey Murphy’s. I’m so sorry to read your news. My breast cancer had a happy ending and I wish the clinical trials I did would have prevented yours.
    Thank you for your brilliant writing and your obvious courage. You’re an inspiration. My mother was a force of positive thinking, too. She told me that each day we have a choice to be happy or not. She had incredible tragedies but always chose to be happy. Good for you for choosing a mantra of seeing the beauty around you. Your children are blessed to have you as their model.

  • Cindee says:

    Hi, have never written on nor joined one of these posting things, but I did read yours and felt some kind of kinship that I havent been able to feel before, I was diagnosed with breast cancer first in 2003 then again with stage 4 in July of 2013. Have spent the last 6 months trying to get my head around it again….and I feel that over the holidays I have made a small sampling of peace with my diagnosis and my disease. Again, it was nice reading your posting. Cindee

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