It does not matter how healthy you look. It does not matter if your hair is growing back or you walk a little faster or manage with just one nap a day now.
It does not matter if any of those things are true, your cancer can be worsening.
As I have described here before, metastatic breast cancer is characterized by resistance to therapies. If a treatment works in the first place (and according to my oncologist, most have about a 30% chance of initial success), the cancer will almost certainly become resistant to it and it will cease working. This resistance will happen time after time. This has happened numerous times to me already. I have had some treatments not work at all (Taxol, Fulvestrant+clinical trial drug GDC-0032) while others worked for a few months and then would not work any longer (Xeloda, Aromasin+Afinitor) .
Once again, this resistance has happened. Carboplatin and Gemzar did their work starting in March and did it well, bringing me back from a very dark place this Spring. After 9 complete cycles, though, they are no longer working. It is time to move on.
Moving on is scary. It means being in freefall as we use educated guesswork to decide what agent(s) to try next.
The good news is that I was officially approved to receive palbociclib from Pfizer under their expanded access (compassionate use) program. I will be able to get this drug before it receives final approval by the FDA and therefore before it is on the market sometime in the next year. There is no guarantee this drug will work (alone or in combination with other drugs that are on the market already). It is just one more thing to try.
There are still final bureaucratic hoops to jump through, though, and I won’t have it for at least a few more weeks. This presents a problem: I need a new therapy now. I cannot safely be without treatment for that period of time. It also is best for me to be in a state of control when I start it; the higher a cancer load I carry the harder it would be if what the drug does is provide stability rather than cancer regression. Stability is considered success in metastatic breast cancer drugs. Just keeping things the same, preventing cancer progression, is good. This is considered “success” in using a drug for metastatic breast cancer. However, if you start at a very high cancer load, that stability may be quite intolerable. My oncologist and I feel it is best to have that load brought down (not just held steady), and we don’t know if this drug is a workhorse like that. We can’t count on it to be.
I’ve known for the last week that things were probably over for this chemo. We had tried a higher dose of both drugs already without success. I adjusted to the news over the weekend and yesterday I started on a new chemotherapy regimen. Navelbine is given through my port as an IV “push”; it’s just one syringeful that is given in about 30 seconds. Having a port is really helpful for this one because it is very irritating to veins if you do not have a medi-port implanted in your chest like I do (the port is completely under my skin, it is a lump about the size of a nickel and is accessed with a special needle by the nurses. They can take blood from it, give medication and chemo through it the way you would with an IV except you don’t have to use an arm vein). We are initially planning on a schedule of two weeks on, one week off, but that may change as we go. And of course, if it isn’t working, we’ll have to try something else.
I’m having some other problems now that the cancer is growing so that has been a challenge. Side effects don’t just stop the minute you stop taking a drug. And moving right on to another one means there is no break. It is what is needed though. The good thing is that if you find something that works (like the Carboplatin and Gemzar did for me), they can do astounding things to kill the growing cancer and bring it back under control.
Metastatic breast cancer is like Whack-a-Mole: cancer pops up in places and then can often be whacked back down. If you’re lucky you can play this game for a little while as it takes up residence in different bones and organs. We’ll see how successful we are this time. This is always the hardest time for me mentally: living with the uncertainty of trying to find a new regimen, trying to find something that works, knowing right now there is nothing.
But this is the choice I have made in choosing to treat my cancer. That is the nature of this disease. These are not heroic measures. This is what treating metastatic breast cancer is.
And so we go… onward.
Link to Twitter
Lisa, these may not be heroic measures, but you are a hero to me (and to countless others). You are faced with extremely difficult decisions so very often. I know that physically you are often beaten down, and emotionally you suffer as well. Yet you always seem to come around, to rally and to do what can be done to achieve stability. I hope with all my heart this new plan works for you.
I am always dazzled and amazed by your clarity. And I’ve probably told you this before… How I wish my loved ones with cancer had been as proactive (and educated about the specifics of their disease) as you are. I know I never was when I was really sick… but if my cancer were to come back, I am so much more knowledgeable and educated now from reading your posts.
Thank you for these updates, Lisa. It can’t be easy to write them, and yet you write them so beautifully. I wish there was more that we, your readers, could give back. But we’re hoping with you every day that the newest treatment regimen will do what it’s supposed to do while you prepare for the Palbociclib (congratulations, by the way, on your approval for this drug)… Onward, like you said; and we are there with you, sending always so much love. xoxo
Hi Lisa
I’m so sorry that your current meds are no longer doing their work and that you are having to search out alternatives, I am gobsmacked at your bravery and ability to get on with it, amidst what undoubtedly must be frightening consequences waiting for the new meds… Along with many many of your cyber friends, I am praying that your new regime works and you have some peace and breathing space from this dreadful cancer…. Cyber hugs my friend, from Queensland, Australia xx
Hi Lisa. Despite the disheartening news, I wanted to say what a wonderful post you have written. Your writing makes things so clear for the rest of us who don’t completely ( or even remotely in some cases) understand metastatic cancer. I am always blown away by the choices you have in the US. In the UK it ‘seems’ as if we don’t have the same choices of treatment, advice, drugs etc. certainly when I was diagnosed with breast cancer I just accepted the treatment and drugs I was prescribed on out National Health Service with no real thought. I was just in panic mode and wanted to start treatment immediately. Luckily it worked for me and it’s now 4 years since my chemo was happening. So I suppose it’s like 2 sides of a coin in the UK. The NHS means free health for all (but this means they are under ever-increasing pressure in respect of time, treatment and drugs that are affordable for the masses) whereas UK Private Health means, I suspect, more choice and time and more similar to what you are experiencing. Lisa, I cherish these updates and really hope that your new treatment works. All the best. Debbie xx
Thanks for sharing your thoughts. I know it is not of much help, but I cannot say how much I appreciate and value your blog and your tweets. Your perseveration in your struggle is an example of how battles have to be fought. The best of the wishes and lots of hugs from Holland.
I read your work every day…partly for your reminder to look for beauty, but also to see how you are doing. And every day I wish that your day has many bright spots of beauty and joy.
Thank you for your hard work in writing even when you are feeling awful – I have never met you but I have learned so much from you.
Your work – and you – are so very appreciated.
It’s not the news you were hoping for LIsa but thankfully neither you nor your oncologists are giving up. Keep your heart up, I think of you often and send warm hugs across the miles from Ireland! My mam and I called her port “percy”! great yoke altogether except the x ray dept couldn’t use them! and indeed I was asked by a dr in A&E if I could take the blood from it!! so annoying that medics aren’t trained in using them. Mam fought this disease for 24 years until it finally claimed her last november. It’s a horrible bitch of a thing and I just wish to god with all this modern technology that a cure could be found. x
Hi Lisa, I have been on Navelbine since June. My CT scans and tumor markers dhow that it is working and my side effects are minimal. I was on Gemzar for 6 months before and it made me so sick! I had daily fevers, and regular blood transfusions. Good luck with navelbine!!
I continue to learn so much from you, Lisa; both about the cancer drug approval and application process and about the resiliency and strength of the human spirit. Thank you. Onward! xo
I too have a mediport. My veins are horrible and most nurses/phlebotomists, have a difficult time accessing my veins. Since moving to a new oncologist, it is there “rules”, that my port is NOT used for blood tests, so now I get stuck in arm and one hour later am stuck in my port for chemo. Is this stupid or what?????????????????? I have tried to get this changed to no avail. 🙁
Sending tons of love, Lisa.
I always hated the game leapfrog when I was a child. I hate it more now. Sending hugs full of strength your way.
Lisa, you are amazing. I don’t think I could be so brave. When my cancer was diagnosed, almost 31 years ago, I found that the lump had been in my records for 7 years! But my doctor was telling me what I wanted to hear, that it was nothing. Don’t forget, this was a long time ago. I believe it was diagnosed as medullary and the surgeon assured me that it doesn’t spread. I had a mastectomy and so far, so good. Things were different back then. I was really one of the lucky ones. I think about you often and I’m hoping for a miracle.
Thinking of you from Chappaqua.
You are loved. Even by strangers, you are loved.
Onward. That is really all you can do is not give up and even on the bad days keep going onward. I am glad you were accepted by Pfizer. I hope it does good things.
Your writing about your treatment, your responses, and your feelings are of immense value to so many, not just those going through cancer, but those who, like me, anticipate that some day I may have to be a caregiver. I don’t hope it on anyone of course, but I feel more capable of working it out because of having read your posts over the years. Thank you for that. M
I have a feeling it will work..so much love your way x x x x x x x ashley
Lisa, I don’t often comment on your updates but read every one as soon as it comes in. I sometimes wonder why “hearing” how you are doing, reading your thoughts about what is going on with you is so important to me. First, we all care deeply about you. And I wish you had gotten a much longer run on the last chemo combo. But you communicate what it is like to be living with metastatic breast cancer in such a real way. The kind of person you are comes shining through your words and I’m very grateful that you share your thoughts and insights.
And Lisa, you also talk about scary things, unknown future, tough times, and don’t gloss over fears you might be feeling, sadness about your family. concerns about what choices to make. Everything you share helps me cope with what is going on with you, but your honest look at how you feel at times, esp treading water after something stops working and before the new treatment –it gives me such courage. Bless you, bless you for sharing so eloquently what you are thinking and feeling. Sending you hugs of thankfulness for you, and wishes for this next treatment to work well and for a very long time.
just wanted to let u know that I am on palbo with faslodex and have been for almost 6 months. I switched after a fourteen month run on carbo/gemzar which as you know, is a tough combo. Like you my onc didn’t know if palbo would work due to tumor burden but so far it has and I have an almost normal quality of life despite extensive bone mets, liver Mets and treated brain mets. I wish you luck with the palbo and thank you for your honest blogging about this disease. You have touched many lives
Dear Lisa,
I am one of your many fans. I don’t know you but have followed your story — blog & tweets — since Kellergate. I am moved by your frankness, self-honesty, and commitment to medically-educating all of us. (Your binder plan should be made available to us all via our insurance companies or the ACA. Actually, the fully-equipped binder, not just the plan!) Also, as a mother, I feel acutely your sensitivity to and awareness of your experiences with your children, about what I think of as the “everydayness” that adds up to witnessing their lives.
I hope you have a good day today. You are in my thoughts.
Kim
I wish we could reciprocate in kind the way your posts help others… You go, ‘Brave Chick.’ xoxo
…and so we go onward, with you…surviving this a little every day. Hugs.
Lisa, I may be a stranger to you, but through your generous, honest, heartfelt sharing you are not a stranger to me or countless others. I care about you the same way I do a close friend of many years. I wish a thousand good wishes and prayers for you. – Lisa Lure
You are amazing. Period.
Echoing the other commenters. You make this so clear – in a way that I have never found before. Your bravery – maybe it doesn’t feel like bravery to you, just a regular way of being, but maybe you are and always have been brave – is inspiring, and has taught us so much. Most of what one reads these days is just waves crashing on shore, yours seems like the discovery of a whole new body of water. Thank you. And so sorry – I know nothing we say can compensate for the diagnosis.
Hi Lisa,
I just asked you a couple of questions on twitter and thought I should leave them here as well, to be part of the conversation.
First, as always, I’m impressed by the clarity of your writing under the circumstances. I can only hope to have a fraction of your nerve if I ever have to face what you are facing. My more immediate worry is for my sister who just a year ago underwent surgery and intense dose-dense chemo and radiation therapies for breast cancer diagnosed at stage 3. Her cancer seems to have gone for now, but we must always worry about the damocles sword of metastasis popping up, as it did in your case. Your blog, your clear-eyed writing, is therefore extremely valuable.
I also like reading your blog both for your poetry, and for your insight into the biology, technology, and bureaucracy of your treatment. As an evolutionary biologist, your description above rasies a couple questions in my mind, about this cancer whack-a-mole:
1. Is the cancer whack-a-mole similar or different from the game with antibiotics and bacterial resistance? Does resistance evolve in the same way? I’m guessing there are similarities, but don’t know enough about cancer cells (I’m an urban ecologist, working with whole organisms and ecosystems, not cells so much) to know what to expect.
2. As drug resistance evolves, is it possible to cycle back to an older drug? This is sometimes possible with antibiotics (afaik). Many host-parasite interactions are understood by the Red Queen hypothesis, invoking Alice in Wonderland, which suggests that hosts and parasites are in a constant race to beat each other, running to stay in the same place. Sometimes this may simply be a fluctuation between one mutation that confers resistance to a particular immune (or drug) response and another one for a different response. So it may be possible to alternate between a given set of antibiotics in a carefully calibrated cycle – which is easier said than done. Does cancer resistance work the same way? Or is resistance permanent once it evolves, with the resistant genes persisting even when the drug is no longer used?
Thank you, and may the new regimens give you the strength to keep whacking them moles for a while longer!
Madhu
Thank you for the update!
Sending you love love love.
Onward, my friend. As always, sending you love.
Jody
Thank you for finding the time and the energy to share with us Lisa. Everyone else has already said the right things. Just letting you know I’m thinking of you.
Hi Lisa, I’m with Meri, wishing there were some way we could reciprocate when you bring so much information and inspiration our way. I do hope that you can feel so many of us holding your hand as you keep finding your strength and increasing ours, Linda
Lisa,
I am so sorry to read about your progression. I hope Navelbine works its wonders. When you said that you were approved for Pablociclib expanded access, do you mean their EAP that uses Pablo with Femara? I have friends that would like access to the drug, but Femara would not be the best hormonal treatment for them to use with it. Alternatively, did you receive approval for compassionate use, and you can use Pablo with whatever hormonal therapy you and your oncologist decide on? If so, how did you manage this? Thanks for your help.
Best,
Jill
All of the discussions are between the oncologist and the drug company as to what they will approve you for. It depends on your current medical state (a lot of bloodwork, cardiac tests, etc) and paperwork about medical history, treatments tried, etc. You would need to have the oncologist discuss with Pfizer to see what program they would be eligible for. Good luck. It is a tricky proposition.
Dear Lisa,
Your are such an inspiration. I wish i had your wonderful attitude and courage.
My thoughts are with you,
Barbara
Thank you for the update. I wish the news could have been better. Hopefully, the next protocol will work for a long time. I have learned so much from you and hope I have even half your strength when the time comes.
Know that you’re not alone in playing Whack-a-Mole. Many people find themselves living with uncertainty, wondering when and where the next cancer scare will emerge. Your blog gives such eloquent voice to cancer’s terrible emotional turmoil. Thank you.
Lisa,
I echo the sentiments of others, and I wanted to know if you have tried Abraxane. This is what I am getting right now (after gem/carbo stopped working). Also, do you have TNBC? Have you done genomic testing? Where is your metastasis located?
I am pulling for you. We are in this together!
~Brenda
Thank you Lisa for that very comprehensive update. I was just about ready to ask you about the Pfizer request. I’ll be right by you during this time of change and uncertainty. xo
I think you’re a hero and brave as you march on everyday.
Deuteronomy 31:6 “ …Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.”
Sammy
I check your FB page every day, I look so forward to your updates because I am also battling Metastatic Breast Cancer. You explain things in “our world” so well….today’s update a perfect example of that…….absolutely love the Whack-A-Mole! Best of luck with the Navelbine….will be checking in daily. And thank you soooo much for sharing.
Hi Lisa,
I stumbled across your blog as my aunt–more a sister in every sense of the word–was experiencing new diagnosis and treatments with Stage 4 breast cancer. I have continued to follow your updates and am so grateful for your words, your experiences, and your honesty. My aunt passed away in May and while I mourn her loss on a daily basis, I find comfort in all you share. Although I am yet another stranger replying to your blog, I think of you and your family often and wish you peace and comfort as you continue onward…
Thank you so much for this update. I think about you all the time. Hoping the new chemo/new meds will keep you well and able to do as much as you can comfortably. Sending much love!!
Thanks Lisa. I am getting ready to start round 1 of who knows what/where we are going to start. It is scary, but it helps when women like you document the reality of what it is (the great and the scary). Thank you.
lisa-i don’t know you; i don’t remember how i found you, but you are one of the voices i check in with because you provide perspective and an amazing example of extreme unimaginable grace under pressure. You did not ask for this cancer, but your journey with cancer has become a beacon/clarion call. I now understand MBC/pinkwashing/need to funding/kellers (gulp-still hard to fathom); i have become politicized by your writings, enraged, heartbroken. thank you lisa, i’m so sorry this treatment is no longer working; we are with you in heart and spirit. much much love and peace.
I admire your strength, your willingness to carry on, your willingness to share what is happening to you – without drama, without tears (which would make so much sense, but cloud the issue). I admire that you are willing to take the time and energy to educate the rest of us about breast cancer.
Your story does far more than all the pink ribbons in the universe.
I applaud you – and send hugs in hope they help to give you strength – of which you must need a lot:-)
Ruthie
Lisa
Again you and my wife are on parallel courses. The only difference being the drugs. My wife has also had 9 different treatments. Currently she is on Kadcyla and Perjecta, She is also looking for clinical trials because as you know and we understand, metastic cancer is not going away. As the famous sports phrase goes you can’t stop it you can only hope to contain it. No humor intended. If there is anything we are doing that may help you I will make sure I post it. We love you very much,
Lisa,
I was introduced to your page by a dear friend and am in awe of your wonderful words. I am two years out from diagnosis and now trying to not live in a state of terror.
Bless you and keep safe, hope your latest treatment does what it should.
Thank you Lisa. Your blog helps me feel less isolated. Good luck on the Navelbine – to both of us – I started the same regime October 6th. Much Love. Nancy
I agree I think you nailed some key points about how we often perceive things verses the reality of what they area. Great post found you here online
I like that your blog is truly out there to help others who are in need of what they are going through great info