Please post your stories, suggestions and share treatments you have been on. I am having a huge anxiety after Bayer dismissed ErSO compound. I hoped that it would be a cure for all of us. I am so discouraged and need strength. I have been diagnosed in 2019 after 9 years of my initial diagnosis. I am now on my fifth line of treatment which is Xeloda. I experience heart problems and may need a pacemaker. I have been going through the cardio evaluation for the past two weeks. I am very upset and down I need some positivity
Thank you so much.
Best,
Marina
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Hi Marina, Great name by the way! I am so sorry you are going through these stages of dramatic change. If there is anything this disease teaches us it is to be adaptable to change. Life is all about change and learning to go with it no matter what life situation is. Now, that does not make it easy or less depressing at times, sometimes a lot of the time which is tough to manage. Yes, that treatment sounded promising but there likely were some major problems that arose in study. We are blessed with new treatments continually in the making and others will come out. Right now there has been some conversation about the three oral drugs 4/6's and which might be better than the other for certain B/C cancer spreads. One is emerging as better for spread to liver--my situation-than the Ibrance and abema. I have not talked to my onco about it as yet because currently I am on taxol infusions and have been doing really well with it for almost a year. This too will change at some point and I will try to be positive in dealing with the next. But, I really get crazed about starting new meds. keep the faith and keep plugging away, we are all here for you.Bonnie
Hi Bonnie, Thank you very much for your message and encouragement. What are the three oral meds you are talking about? My Mets are to bones and liver. I am not as positive and calm as you are. I am very nervous and anxious. I hoped and still hope for cure. We all in the fb group ErSO activism and breast cancer follow the ErSO development but it’s not going to human trials any time soon. Thank you for your kindness and support.
Yes, Sandra, well said. Its tough but doable for all of us. Example is my onco team wanted me to do chemo infusion on Tuesday as that is when they are in the clinic. But, I said no from the beginning that I wanted Monday early morning and if I felt like crap I could just rest a couple of days and still enjoy my family events on the weekend. Now, this past week, I had to do Friday because of missing so much. That was NOT great as I assumed a year ago. I am back on my Mondays starting 1/24 and comfortable with that! WE just need to find a bit of control of our own bodies and situation and not allow any doctor to take that away from us. This helps dramatically.
I so agree with Sandra! And Bonnie! This is all hard, change is hard and not knowing the future is hard. But even before cancer, none of us knew the future so that is not something that has changed!
I, too, was hopeful for ErSO-- but it was always a long shot. I know it's hard to shift how we think, but I wonder if it would be helpful if you tried to untangle yourself from the SPECIFIC hope of ErSO, and instead focus on being hopeful in general. There ARE many dedicatedresearchers, and lots of drugs being developed.
In the meantime, and most hopeful of all... existing drugs can work too! Each of us responds differently, so it's sometimes a matter of patience in finding the right one. If you look at women who have being dealing with this for many years, they have often been on a string of treatments, not just one.
I was gutted when Ibrance/Faslo stopped working after 2.5 years. I feel great, have a super quality of life and didn't want to lose that--so found myself thinking ugly things like feeling jealous of women who got much more time out of it than I did. Boy, that was not helpful!
I believe in self-advocacy, so looked into trials, insisted on a consult for a Y90 in my liver and asked for a biopsy to make sure the pathology hadn't changed.
My oncologist said yes to all of this, and in the meantime, put me on Xeloda--a pretty old fashioned drug. Surprisingly, my markers are now down by half, and the blood biopsy didn't find enough circulating tumor DNA to analyze. I just today got an email from my Onc saying there is now no point in a trial or tissue biopsy as it all seems to be working.
This could all change tomorrow. That is the world of cancer... but for now, I'll take t
What helps me is to fill my mind with upbeat things like stories of the many women who chug along long term (5+ years). I try to avoid doom and gloom statistics. And rather than wondering what's next, both in terms of prognosis and treatment, focus on what I can actually do RIGHT NOW to keep my body strong and fit --exercise, diet, working with my functional nutritionist to test for deficiencies that might fuel the cancer. (I don't self-medicate on this front--there is so much quackery in the functional medicine space that it is important to find an advisor who is highly trained at a reputable university plus has many years of clinical experience. )
Have you read the book Radical Hope by Kelly Turner who also wrote Radical Remission? each chapter details a factor common to the long term survivors she has studied, along with case studies of individuals. I am a bit skeptical of her research insofar as she doesn't account for people who eat pizza and drink beer and still bop along for years with cancer, while others do it all "right" and drop dead anyway. Still... I found the book both hopeful and helpful. There is clearly something to her work, and it is all practical and actionable.
On a more existential level, another writer I love is Kate Bowler, a Duke divinity professor living with Stage 4 Colon Cancer, diagnosed when she was in her mid thirties and thought her life was perfect. Her latest book is called No Cure for Being Human, a memoir of sorts where she talks about how life is at once horrible and beautiful--and the difficulties, and blessings, in wholeheartedly embracingthat uncomfortable dichotomy. She is also warm and very funny. And has a podcast called Everything Happens that is great too.
I guess what I am saying is just like it helps to be mindful of what you eat to nourish your body, it also helps to take care about how your thoughts are nourished. Worry doesn't add a day to your life, to paraphrase the Bible.
The bottom line is you are stronger and more resilient than you know. If you need help believing that, perhaps work with a therapist who can assist you.
None of this is to diminish what you are going through. Creating a positive mindset isn't flicking a switch; it is a daily practice , some days go better than others-- and that's perfectly OK--I struggled with depression brought on by Tamoxifen a decade ago, and know how insidious it is. BUT it IS possible to move beyond it. And so, so worth the struggle.
Thank you so so much for sharing your experience and thoughts. Thank you for your very nice message that sounds so positive. I still check updates for ErSO and trying to hold hope that it will go to clinical trials and cure us. The scientists are still optimistic. Life with MBC is very difficult for me but I understand that it’s not my choice. I was on Ibrance and exemestane even a shorter time than you were. I wish it would have controlled this disgusting disease for longer. Then I was on tamoxifen and pet ct showed a met in liver. Before I had bones only. My pet ct is in 9 days and I am very scared. In addition I got some heart issues I am dealing with now. I understand that no one knows the future but my pre-cancer life was much happier. I lost the joy of life no matter how hard I try. I was dreaming about a cure or at least a long lasting treatment that one doesn’t have to change.
I wish you the best. Thank you again for your kindness, encouragement and support.
I share your thoughts as well. I preach truth to myself when my thoughts make me anxious. I fight hard for joy and want to live the life that I have well. It looks nothing like what I thought it would, but these hard things have taught me much about myself and about my faith in my sovereign Lord.
So I echo the encouragement to not place your hope on one drug. I hope there are many options available to you. My oncologist reminds me this life is a marathon not a sprint. So there will be straight stretches, hills, valleys, and bumps on this journey. My prayer for all of us is that we can find joy and purpose along the way. Hang in there dear sister. We understand and are here for you.
Hi Sandra,Thank you so much for your suggestions and encouragement. I still have hope for ErSO and the magic word CURE but it’s not happening now. We get updates from the scientists and Systems Oncology that are working on fixing “some scientific issues”. Meanwhile I am upset, and anxious due to the new problems with my heart and possible pacemaker as well as this disgusting cancer. No matter how I try to stay positive this disease is scaring me a lot. It’s fear of unknown. I also have scan anxiety. It’s coming up in 9 days.
Thank you for your knowledge, kindness and support.
Marina, I pray your result of your scans are good. I just got results yesterday and mine are stable. Yes I have some scan anxiety too but I also take something for anxiety. It is a tough journey. Theresa
Thank you so much Sandra for your undivided attention and such needed support. In addition to scan anxiety I am dealing with heart problems. I have an appointment with two doctors on Friday-cardio physiologist and general cardiologist. They will decide about a pacemaker. It’s so much on my plate. It’s very difficult to handle. I appreciate all your suggestions and support. I check ErSO updates every day and still hope for cure. It’s so difficult for me to live with this disease. I admire strong women like you but can’t stay calm and positive. I try but still have fears. Best wishes
Hello Marina. Have you tried meditation or Tai Chi? They work wonders in calming the mind and relieving stress. Please do not be obsessed with ErSO. I too was very much looking forward to it but have come to accept that it may not amount to anything, at least in the near future. I know that you are going through so many hurdles right now and I sympathize with you but maybe put your mind on the available treatment options. There are probably still a number you haven’t tried. I’ll be praying for your peace of mind.
Hi Mymiracle13,Thank you very much for your nice words and suggestions. I tried chi gong but it did not help much. I will try it again. I did have such hope for ErSO and still do but it’s not happening any time soon. We need cure. It’s so difficult to live with this disgusting disease. I can’t believe that the scientists can’t find cure or a long term effective treatment. This life from petct to petct and from markers to markets is very difficult.
I know what you are going through. I have heart issues too caused by my first line of treatment. I have congestive heart failure and a couple of years ago found out I had a leaking mitro valve. In March of this year I was told it needed to be repaired either by open heart surgery or through my groin. It was a tough summer not knowing what was going to happen. I saw the heart surgeon the beginning of October and found out I qualified for it to be done through Thor groin and I had the repair surgery October 28 and came home on the 29th. It went well. Hope and pray all will go well for you too. Theresa
Hi Theresa,I already learned that I need a pacemaker. The surgery is scheduled this coming Wednesday. What medication caused your heart problems? My oncologist thinks that in my case it’s not Xeloda I am on now. I started feeling bad after the Moderna booster.
When were you diagnosed? What Mets do you have? What meds are you now?
The drug called the Red Devil.....I had it when I had my original diagnosis in 2002. ( I am not home so can’t) look up the name....on our way to Florida for a month). Never found out I had heart issues till about 2013. Started taking heart meds then and it strengthened the heart muscle but then they discovered a leaking valve. The kept an eye on it and Oct. 28th , 2021 I had a mitro valve repair and I am doing well with that.Theresa
Hi Theresa. Thanks for sharing. I was on that chemo drug in 2010 after my initial diagnosis. Can it cause heart issues in so many years? Did the cardiologist tell you that? Enjoy your Florida vacation. I am in Florida now as well. Best,
They are guessing. I could have had it longer but found out when I was going to have reconstructive surgery which I never had. So kind of found by accident but then also developed congestive heart failure in 2017. Are you having your pacemaker put in in Florida? Where about s are you in Florida? Is this where you live? Theresa
Hello, Do you take something for your anxiety? If not, I suggest you try that route. I tried for years to try and control my anxiety with classes, breathing techniques, meditation, everything and anything, but, in the end, I finally had to resort to pills. I just couldn’t shake it and decided it had to be up to some kind of chemical imbalances and not just me being crazy! I had anxiety when I was younger, but it came on a million times worse after menopause. Now I’m much more relaxed. I still worry, but I rarely get to that frantic state of grasping at straws over anything and everything, which is exhausting in itself. Be kind to yourself, you deserve to be the best version of yourself, ill or not, and I know extremely well, anxiety is not any way to live. It’s extremely scary in and of itself. I fought pills for SO long and should have taken them sooner, but I was too anxious to trust them! I hope you find some relief. Quiet your mind and get some help. Take care.
DANG !!! I needed to hear that Sandra!! I try hard to be positive!! Today I find out if I will be changing my first line of treatment letrozole/ibrance, 8 mths into my diagnosis of mbc. Then life drops stuff, huge parking ticket, an unexpected big bill came due. All the anxiety and negativity, fear come crawling back. All of which I am trying very hard to work in stay calm and not feeding into the fear/anxiety of it all. To say I'm not grateful, I am. It is a big old world out there when you are on your own with it all. I don't have a mate to hug and say, it's all good you got this. I have me. Which means times like these feeling down and discouraged your voice just has to get a little louder...YOU GOT THIS. Stay in the moment 😁.
In 2 weeks it will be my 6 year cancerversary. I have extensive bone mets, which have been inactive since I've been on Verzenio and Faslodex for nearly 4 years.I have chronic depression and have been on antidepressants for years. MBC sent me into a tailspin! I was a mess for 2 years while on tamoxifen first line. I had to see a therapist and still do.
The unknown was the worst. The 22% 5-year survival did not give me hope. (numbers are slowly improving though) I saw it as 78% will die during that time and was convinced it would be me. Every day I thought about death and had a lot of anticipatory grief, thinking about how my young daughter and husband would suffer after I'm gone.
I had a progression at 2 years and was put on Verzenio and Faslodex. Within 6 months I was NED and was filled with joy for the first time in forever. It has helped me stay more optimistic, but it is still agony to think about my family's future.
I say Verzenio is my miracle drug, and was able to tell my story at a Lilly oncology conference just before COVID hit in 2020. When they gave me a standing ovation, I was shocked and cried out of happiness.
I try not to dwell on the future, and be present every day. I try to stay busy and not think about MBC so much. I do have times of tremendous grief and sadness, though.
It is a daily battle that hardly anyone can understand if they are not affected.
Hi Amy,I am glad you are doing well. Thank you for sharing your story. My MO said not to look at the statistics. It’s old. Many new meds are on trials and coming out soon. When I read google and see the statistics, I am getting very depressed. I try not to think about it. This is why I asked real people to share their stories.
Thanks Sandra.....I am not a long time survivor either yet (2019) but am feeling peace now and just hope and pray there is a new treatment available when the one I am on quits working. I feel a lot different no than when I had my original diagnosis in 2002. I do have anxious days too when I am not feeling well but mostly peace. Marina I wish that peace for you too and trust that there will be new treatments when you need them💕 Theresa
Hi Theresa,Thank you so much for sharing your story, your nice words, suggestions and encouragement. I am sorry for your heart problems. I am glad your scan was good. I was taking medication from anxiety but it was not helping me.
Hi Sandra,Thank you so much for your message and nice words. I am very upset with. everything. I am trying to stay positive and have hope but it’s not easy.
i'm a thrIVer! July 2015, mets dx; going in to seventh year. fortunate to still be on first line of treatment and stable/NEAD since March 2016. i believe it to be about mindset; accept what is...find the light in the dark...the positive in the challenge. keeping you in my thoughts.
Hi hurricaneheather,Thanks for sharing. I am glad that you are lucky to be on the first line of treatment for so long. I am on my fifth line of treatment over 2.5 years which is chemo pills. Thanks for your nice words and suggestions. I hope for cure. I am so tired to change meds.
I'm sorry you're going through this. It's really hard. I was diagnosed MBC in October of 2013. At the time, a good friend, going through Stage IV colon cancer suggested to me that an anti-depressant would be a very good idea. I took him up on it and it enabled me to stop the continuous loop of possible catastrophes going through my brain. It was one of the best suggestions ever. This disease is horrific and yes, the problems are a matter of life and death; bigger than problems in the order of having the right purse and shoes.
Also, as an Illini, I too hoped ERSO would be the answer. I'm pretty certain they can cure cancer in mice, but humans are more complicated. The good news, as has been mentioned above, is that there are a lot of researchers doing serious research into this disease. If it were easy to cure, a cure would have been found way before now. What I used to do when I was first diagnosed, was to Google "Metastatic Breast Cancer Breakthroughs." It would stress to me how hard people were working. Remember, it is necessary that they do all the testing they do. If they didn't, weird one-offs would become mainstream treatments which is a very, very bad idea. I am still on my original treatment protocol of Anastrazole, Fulvestrant and Xgeva, and believe me -- I'm crazy lucky.
Other than that, I have also found it helpful to get out a lot -- just to divert my mind from cancer. Ceramics has become my passion. It turns out I'm kind of good at it. Who knew? I have a lot of fun with it and have found a new community, which has been great.
I'm hopeful that you will find a little peace. This is a really hard road. Oh, and as has also been mentioned above, start a list of things you're grateful for. That also helps me, I go over mine in my brain every night before bed.
Hi Diamags,Thank you for sharing your story. I am glad that you are extremely lucky to be on the firs line of treatment. I am on my fifth one over 2.5 years. I tried antidepressants but they did not work for me. I felt the same. Thanks for your suggestions. I hope for cure. It’s so difficult to change meds all the time and face the unknown. Erso is still being developed but human trials are not going to be soon.
Marina I am going to add one more thing from my experience. When I was depressed, it was almost like I didn’t want to get better. I was afraid to leave the dark place my mind had ended up. I am not a psychiatrist but I think that is a symptom of the disease not a reality. Depression is as much biological as it is “mental”
I had to start by forcing myself to push beyond the feeling that I wanted to stay in the dark place. I had to remind myself that this feeling wasn’t “me” it was messed up chemicals in my brain. Thinking of it as a symptom of something biological was helpful for me. I could start taking baby steps to fixing it.
For me, antidepressants did not help for a litany of reasons I won’t bore you with . It was stopping tamoxifen and regaining hormonal balance —although that probably led to my recurrence. I wish my oncologist had been more aware of the very real connection between hormone drugs and depression and we could have tried other things. But never mind.
I do know that for many antidepressants are lifesaving and could absolutely be worth a try for you. Just be sure you have a good psychiatrist who is with you on finding the right dose and type. I also wonder if you could benefit from a type of therapy called Cognitive Behavioral Therapy. In essence it helps you retrain how you coexist with your thoughts. It helps keep things in perspective rather than letting thoughts run away. Many people find it immensely helpful.
Exercise is another. You don’t need to run a marathon, but can you take a walk? Do some light yoga on YouTube? If I don’t exercise you don’t want to be near me. 🤬
You are indeed going through a lot. Heart issues plus cancer treatments that aren’t cooperating. . And both cause inflammation in the body which, according to a book by the head of neuroscience at Cambridge, can itself trigger depression.
It’s no wonder you’re depressed. But I speak from experience when I say there are ways of treating it, and getting a handle on it will be life altering and make everything else so much less awful. It will open up space for you to cope and deal with the health challenges rather than feel overwhelmed and helpless.
I hate having MBC. It is so damned unfair. Yet am so grateful I have my equilibrium this time around.
Taking the first steps towards mental health can be hard as those silly chemicals tell you it’s better to stay in the gloom, but they’re wrong.
Hi Pbsoup,Thank you for sharing your experience and your suggestions. Who doesn’t hate mbc. It’s such unfair that after all torture people go to with primary, it recurs as stage 4 incurable. I hope that cure is coming or at least an effective treatment. I read about a trial for cancer vaccine today. I still have faith in erso but it’s not happening any time soon.
Hi Marina. I just changed my anti anxiety meds this summer. These are working much better. Maybe you can try a different one💕. Makes all the difference in the world. Theresa
Hi MarinaI had been on Wellbutrin for a number of years but it quit working. I started always having a pit in my stomach and then he switched me to 15mg cipralex. I feel so much calmer. Hope you can find something that works. Makes life so much easier.
Sorry Theresa. I thought they are cancer drugs but then I understood that you are talking about antidepressants. I meant cancer subtype like er positive, her2 negative Thank you very much for sharing. Best,
I am hr positive. Yes it was antidepressants. For my cancer I am on Ibrance and letrozole. I dislike what the Ibrance does to me but it is working so far so I will deal with it.Theresa
I'm relatively new to this MBC experience. I initially worried about my general longevity and what future lay ahead of me...but my oncologist was quite blunt and said its important to live in the now and said no one can predict their future....however as a reassurance she gave me an example of a lady that she has been treating for over 20yrs who came to her as a MBC patient. She briefly turned her computer screen and scrolled through pages and pages of treatments and medications that the lady had been prescribed. She explained how this lady started her journey when the drugs that she was going to start me on were not even created...and how there are now so many more improved options available.
The patient she used as an example was now in her 80s and had lived an unhindered and active life ....now she had sadly developed Parkinsons disease and due to its progression her cancer treatments were coming to an end. Ultimately she would not die of cancer but from this unrelated condition that she had developed.
I found this both grounding and reassuring.
I hope this story gives you some encouragement.
Try and stay positive. Look after yourself as much as you can ....both physical and mental health are important to keep us fuelled and armed in this trying journey.
Hi Zoe,Thank you for sharing your experience and the story about a lady who survived 20 years. It’s encouraging. My oncologist tells me the same thing that no one knows the future but my life without mbc was of course much happier. I hate this disgusting disease and am very frustrated that the scientists can’t find cure or a long lasting treatment. They did for hiv, polio and hepatitis c or b. We all were very excited about the compound ErSO that cured animals but the pharma Bayer canceled its development. Now scientists are working on it again. We have a group on FB ErSO and breast cancer activism. We are trying to follow its development by getting updates from scientists and Systems Oncology, the company that owns the license. Hope it will go to human trials but we do not know when.
Hi Zoe,What meds are you now? I am so down because I am on my fifth line of treatment over 2.5 years. You are saying that the lady who survived 20 years and is still alive had a long list cot treatments. I see ladies here who have been on one treatment for many years. But my first line worked for about a year.
I’m currently taking Ibrance, Zoladex, Zometa and Femara. Ibrance is already my secondary line of treatment as Kisqali that was originally my starting medication caused liver enzyme issues for me.I initially found it both worrying and discouraging to be changing meds so quickly, as I was only on Kisqali for around 3 months and have only been MBC diagnosed for approximately 6 months.
My oncologist reassured me however that ,off the top of her head, she could think of at least 27 other lines of treatments and combinations that are currently available and would work for me ….as well as others in development.
Another encouraging thing to consider is that doctors are now reconsidering the way that meds are administered. Old medications are now sometimes prescribed again later on at adjusted dosages and in different combinations. Some doctors also see possibilities to trial the use of medications normally used to treat other types of cancer for some cases of MBC. It’s perhaps one of the positives that came about from the awful global pandemic we’ve all experienced ….you might remember how before COVID vaccines were fully developed there was a lot of medical investigation into repurposing older existing medicines….and this type of research has many applicable crossovers.
I completely understand your perspective here, as I’m sure so many here do.
I wish I would’ve known more about this early on, although my integrative doctor was the one who introduced me to it, and I didn’t stick with it initially.
The closest I’ve been seeing to the most promising treatment alongside traditional treatments is fenbendazole. I don’t know why more people aren’t incorporating it, as it’s super cheap, effective and doesn’t have nasty side effects from what I’ve seen and experienced. It did elevate my liver enzymes substantially so I had to suspend treatments for a few weeks but I now understand that was due to me not incorporating liver support supplementation with it, which you’re apparently supposed to do right away.
For estrogen driven types though, fenbendazole isn’t as effective on its own so it appears as though people do better if they’re on a hormone blocker like Lupron or already in menopause.)
Facebook has two very active groups discussing it daily along with dosage, diets, supporting supplements, successes and those who didn’t have success. Anecdotally and comparatively speaking, to me the successes are beyond belief. (Literally, haha. My doctor doesn’t believe it).
One group is called Mycancerstory.rocks and the other is called Fenbendazole - Cancer support group. Years of knowledge on both, and many late stage successes w cancers of all types. You can also search in the search bar for keywords if you want info on something specific. At the very least, worth checking out. Good luck to you!
Hi Sandra,I contacted the lady you mentioned in your post. I am very down. My blood pressure is up. I think it’s because of huge anxiety. I hate this disease and all meds that are supposed to be changed. You never know what to expect. It’s such an unfair disease. I still hope and dream for ErSO, the miracle drug but no news for a long time.
Hi Sandra,Thank you so much for your message. I now have hope that my blood pressure will get back to normal after a pacemaker placement. Also thank you so much for the wonderful quotes. I liked them a lot. I will try to control my anxiety but it’s very difficult
for me. I am glad that you enjoyed your walk. I am going outside now as well.
Best wishes to you. Thanks a lot for your encouragement and support.
Thank you Sandra, you have such good advice. I think it helps all of us. I'm only starting my third year but I also plan on being long term survivor. I try to be positive and totally believe in the power of prayer. I have put my treatment plan in HIS hands. God bless all of us that are dealing with MBC or any type of cancer.Carolyn
Hi Sandra. Thank you so much for checking out on me and for all your kindness and support. It’s so nice of you. Today is the first day I am better. I was weak and had a low degree fever. Overall it went ok. Best wishes.
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Ibrance and/or long term port & Blood Clots? 
Long Story then Question: Ibrance or Pikray?
Does anyone experience long term Ibrance side effects?
It’s been a long rode
Anyone on Ibrance 75mg for long term ?
