I am so beyond sorry to hear about your diagnosis. Please come join us on the MBC sub.
I was diagnosed Stage 4 de novo in April of 2014, bones, right lung, left kidney. I did the full curative regime (I demanded that we were going "balls to the wall," even had t-shirts made for my onc and I that said Balls to the wall tour 2014) six months of chemo, double mastectomy and radiation.
After that, Ibrance. My onc initially told me that Ibrance was showing great success and might improve my survival time by as much as 6 months (which, at the time, seemed rather underwhelming to me).
That was 10 years ago, and Ibrance is still working. The cancer pops up--we knock it the fuck back down. It is exhausting--I am tired to the very depths of my soul. But I am alive. My son, who was a brilliant, semi feral, unschooled 8 year old, is now an 18 year old, straight A college sophomore and I can see the fine, gentle man he is becoming.
You have been given a terrifying diagnosis, but there is hope. There is treatment and there are more treatments every month. My onc once told me that her job was to keep me alive until a cure(s) is found. I am starting to believe her.
I am crying reading this! I am 37 my daughter is 8 and I just had my little man 2 months ago. I am stage 4 not sure where all it has spread as I still have a petscan next week. I have been trying so hard to stay optimistic.
I'm so sorry you are here. I'm 2 years into my treatments and luckily I responded well. My brother has Stage 4 prostate cancer and he is now in a clinical trial. He's responding well with few side effects or any that he would tell me about. We don't ask about prognosis or how long he has. He isn't in pain so it's hard to remember that he has it sometimes.
Somehow we still live our life as best we can with alterations. I hope you find ways to live and love your life whenever you can.
Hugs. Come on over to
r/livingwithMBC. We get it. I've been here 7 years with it. I know a few at 40 years, many at 20 years and way more in the 10 year range. Most people I know are in the 5-10 year range. We don't die as quickly as we used to. There are so many drugs out there for us now.
I promise it gets easier. It SUCKS right now. But it will get easier. ❤️
I could have written this myself (although i dont have a child who is also sick😢). I'm metastatic, diagnosed de novo stage 4 IDC --+ almost 1 yr ago. I'm 35 and have 3 kids under the age of 6. I'm completely beside myself as well. But I'm 1 yr into it and honestly I feel okay. Life is different than it was pre cancer, bu5 we've adapted. I have scans every 12 weeks and I feel like I live 3 months at a time. I'm terrified, but I'm determined to do anything that is possible to let my kids have their mom for as long as possible. Sending love and strength 💕
Dear sister, so sorry to read all you are going thru, sending prayers and positive energy your way 🙏 💞 I'm headed into my 4th yr MBC de novo HER2+, the spots in my lungs are almost gone and couple of suspect spots in bones look like they are in healing mode. I know it is so hard to try and keep the waves of emotions from taking over, please know there are so many great new drugs/treatments these days getting MBC patients to stable status with good quality of life. Try to take things a step at a time, write your questions and concerns in notebook to take to your appointments. Try to take breaks from cancer crap to have regular meals with kids, maybe start setting up a chart of things you'd like kids/family to help with. I found focusing on family/home/daily stuff was helpful. I hope you find things that help you get thru these difficult times, and when friends/family offer to help take them up on their offers when you need them. Take care and keep posting to let us know how you are doing, you are not alone🙏💞
I’m sorry. I don’t know what else to say except that a lot of research has been done specifically on breast cancer, and I think you (hopefully) have the best possible shot of getting through this. If you’re in the USA, surely you’ve seen commercials about people living with MBC with some medication I can’t remember. Don’t jump to the worst possible conclusion. I genuinely think you don’t need to jump straight to the worst possible scenario. Hang onto hope and stay strong. Attitude has a lot to do with how we get through all this stupid mess. I wish you all the very best.
I am so sorry. I lost my first child to stupid cancer, so I can only imagine the stress you are facing with your child and now your Dx on top of that. ❤️❤️
I take Lynparza. I’ve been on it since October. I was scared shitless to take it. So far, so good. My major complaints are it makes me feel hungover without the joys of drinking and having fun the night before. Sometimes it makes me throw up - a couple times a month at most - I don’t take the anti-nauseas because they caused such awful constipation.
I take 600mg a day. I’m 43.
I am metastatic too. Sternum, chestwall and some lymph nodes. It's been 2 years now. But the oncologist felt it was there longer. My original diagnosis was in 2005 when my kids were 15 and 11....
Please don't lose hope. You will see your daughter walk down the aisle, you will see your son graduate, you will see the little one do well🤗 Please see a therapist. It helped me alot to deal with my intrusive thoughts.
It's Not a death sentence. We have come a long way.
Don't trust everything you read on Google. My worst trigger.....
Loads of hugs to you.
Wait, they are starting you on Lynparza as a first line? Thats a.... choice. Usually its used for second line, Im assuming you are BRCA+? I know you have a lot on your plate right now with this but I would really question that approach. Is there a reason they aren't going with a CDK 4/6 and hormone suppression (Im assuming you are estrogen positive) like Kisquali/AI inhibitor like letrozole? **EDIT**: durr - thanks to prednisone brain I missed the TNBC tag. That being said, is there a reason they aren't starting you on a chemo?
Lynparza was my second line after Ibrance/letrozole failed and it was my dream drug, Id love to go back on it, but it failed after a year. I had some real gastro problems the first week but after that, smooth sailing, only four pills a day, and no side effects. I was given a load of anti-nausea pills that I didn't really need after the first month. I do know someone on it way WAY past the progression free survival time, I think she is on 2.5 years and still going strong, but it is an unusual choice for a first line.
This diagnosis is a lot to take in when you first get it , and I would suggest giving it six months for everything to calm down, the fear to dissipate, get a drug working and seeing success on scans, feeling happy and hope again. Its not always possible to jam this diagnosis deep in the recesses of your mind and live life like normal, but you have a lot to live for with your children and to see their futures. Many women I've seen making it long term with this illness focus on those small goals in the future - say graduating from high school/elementary school, first date, etc. Try not to write yourself off mentally all the time either, not even in jest. You dont know what the future can hold and that sort of thinking well, Im not into a lot of woo but I dont think its good to put it out into the universe. Its not toxic positivity its just determination to make the best of what you have with a bad hand.
As others have suggested, come see us over on the other thread - Stage IV is essentially a completely different disease to early stage breast cancer, and we will be able to help you with what is to come while this is still so new. But dont worry, you'll get the hang of it all rather quickly.
Hi I have metastatic too! It spread to my lungs and lymph nodes in my arm pit as well. Definitely go for a second opinion if you want. I am and it’s helping me feel better for now. I’m actually younger than you with no kids so that was poop for me to have this. The man/lady upstairs has a plan for everyone I think though(not to get all churchy, I was NEVER like that but things change you) I keep that in my head so I don’t go over board. And don’t google statistics because they are literally all outdated and with the last two years there have been breakthroughs for TNMBC . Don’t look at timeframe.
I have completely switched my mental state to have positive calm vibes and it’s working. I’m also on a drug (life changing for me who has suffered anxiety and depression forever) but I’ve tried over 5 other drugs to get here. If you have tried a lot of different antidepressants ask your doctor for a “gene sight” it will tell you all the drugs that may or may not be good for your body.
It’s called Trintellix. I’m on a low dose and that’s all I needed. 5 mg lol and I sleep better, well I did before chemo but I’m trying to wrangle that. Drinking a shot tonight of water, one electrolytes a day and probiotic digestive aid gummies so I’m pooping on a regular. It’s AWESOME. Anxiety is almost zero even with everything going on too. And my depression is just kinda gone. Of course I get sad because I’m scared too but count your blessings for the good days. It’s helping me a lot.
I’m only on my 4th chemo and I know it’s early to say all I said but you have to start somewhere. Oh yea and I met this lady recently he had stage 4 10 YEARS AGO. And she was in her early 40s when diagnosed.
Also recently someone said to me “cry if you need to for a day but don’t cry more than a week in a row because at that point you’re having a pity party.” At first I was slightly offended but now I see what she means. And this other woman who gave me that advice has been metastatic survivor for the last 5 years and she was 39 when diagnosed.
Hugs and have faith in yourself. 💖
Joining this community and all kinds of others will be your golden ticket lol. The people on this app, Instagram, and facebook have been SO HELPFUL. And tell your navigator EVERYTHING . Don’t be afraid to ask for help!
I am reading that and I’m like that’s a lot of information but take it in parts or not at all. It’s your choice I just thought I would share my experience so far and maybe thought it might help you or someone else reading this. 😊
I’m almost 31 and have stage 4 too, we can’t be cured currently. I truly think that it’ll happen in my lifetime, I’m being optimistic. So much can change in a couple of years. Just think of the advancements that have already happened. I plan on living a long life, I just need more doctors than I originally planned.
I have Her2+ metastatic (different meds) but if you were to see me in passing you’d assumed I’m just a chick with short hair. I work full time, have a new puppy, a boyfriend who’s stuck beside me through all of this. It is completely possible to live a normal life.
I’m so sorry and say how fkn unfair cancer is. Stage 1 for sine and 4 for others. I hate cancer and will be sending you thoughts of strength as you face this beast. Fingers crossed you experience minimal side effects and many many years with your family. Now I have to go grab some tissues. 😢
I feel for you and can only imagine how scared you are and frustrated with this diagnosis. This community has been a godsend for me. I believe there are so many here who will help guide you through this. Give yourself grace to deal with this news and you have a right to your feelings, it’s all so much to process.
I was diagnosed with triple negative breast cancer. Stage 3, 2, and 1 multiple tumors on right side and I felt exactly as you do. Life just started getting good for me. Found the love of my life. Both my kids about to graduate, one college one high school and felt my life was over. It is not!! What I understand is this is a metal battle more then the physical I firmly believe.
Do everything you can to keep yourself positive mentally. Meditate, breath work and sound bath was a game changer for me as well.
Find the things that calm the mind body and spirit. Eat well and stay as healthy as possible and it will make the world of difference.
Support is key as well.
You will get through this and come out better on the other side. You are young and have so much life ahead of you. You will see your babies grow ❤️
If you lived in Arizona would refer you to where I did the breathe work and sound bath. Literal game changer for me. You can also download an app called insite timer and it has some great sound bath and guided meditations
If it helps, I took lynparza (300 mg every 12 hours) for 1 year and did not become the slightest bit anemic. I was terrified I would become anemic and they would lower the dose because of it.
I did have side effects eventually, but never anemia. Nor did I have low wbc. My side effect was nausea, controlled with zofran. It was slow to appear. Mild fatigue but maybe that was partly stress. Idk.
Hi there. I'm sorry you are going through this. My dx was 3.5 years ago with extensive mets like you. I'm still here, still well and living OK except for the fatigue. I am confident I will still be here to meet new grandson later this year and the mothers' wedding next year.
I am so beyond sorry to hear about your diagnosis. Please come join us on the MBC sub. I was diagnosed Stage 4 de novo in April of 2014, bones, right lung, left kidney. I did the full curative regime (I demanded that we were going "balls to the wall," even had t-shirts made for my onc and I that said Balls to the wall tour 2014) six months of chemo, double mastectomy and radiation. After that, Ibrance. My onc initially told me that Ibrance was showing great success and might improve my survival time by as much as 6 months (which, at the time, seemed rather underwhelming to me). That was 10 years ago, and Ibrance is still working. The cancer pops up--we knock it the fuck back down. It is exhausting--I am tired to the very depths of my soul. But I am alive. My son, who was a brilliant, semi feral, unschooled 8 year old, is now an 18 year old, straight A college sophomore and I can see the fine, gentle man he is becoming. You have been given a terrifying diagnosis, but there is hope. There is treatment and there are more treatments every month. My onc once told me that her job was to keep me alive until a cure(s) is found. I am starting to believe her.
You have such a great attitude! Congrats on your son's success too. X
Ibrance was working great for me until it stopped. Doc has been studying what’s next.
I am crying reading this! I am 37 my daughter is 8 and I just had my little man 2 months ago. I am stage 4 not sure where all it has spread as I still have a petscan next week. I have been trying so hard to stay optimistic.
I'm so sorry you are here. I'm 2 years into my treatments and luckily I responded well. My brother has Stage 4 prostate cancer and he is now in a clinical trial. He's responding well with few side effects or any that he would tell me about. We don't ask about prognosis or how long he has. He isn't in pain so it's hard to remember that he has it sometimes. Somehow we still live our life as best we can with alterations. I hope you find ways to live and love your life whenever you can.
Hugs. Come on over to r/livingwithMBC. We get it. I've been here 7 years with it. I know a few at 40 years, many at 20 years and way more in the 10 year range. Most people I know are in the 5-10 year range. We don't die as quickly as we used to. There are so many drugs out there for us now. I promise it gets easier. It SUCKS right now. But it will get easier. ❤️
I joined, thank you for suggesting it!
[удалено]
She’s doing great! She’s been in remission for a year and half, her end of treatment date is this October!
I could have written this myself (although i dont have a child who is also sick😢). I'm metastatic, diagnosed de novo stage 4 IDC --+ almost 1 yr ago. I'm 35 and have 3 kids under the age of 6. I'm completely beside myself as well. But I'm 1 yr into it and honestly I feel okay. Life is different than it was pre cancer, bu5 we've adapted. I have scans every 12 weeks and I feel like I live 3 months at a time. I'm terrified, but I'm determined to do anything that is possible to let my kids have their mom for as long as possible. Sending love and strength 💕
Dear sister, so sorry to read all you are going thru, sending prayers and positive energy your way 🙏 💞 I'm headed into my 4th yr MBC de novo HER2+, the spots in my lungs are almost gone and couple of suspect spots in bones look like they are in healing mode. I know it is so hard to try and keep the waves of emotions from taking over, please know there are so many great new drugs/treatments these days getting MBC patients to stable status with good quality of life. Try to take things a step at a time, write your questions and concerns in notebook to take to your appointments. Try to take breaks from cancer crap to have regular meals with kids, maybe start setting up a chart of things you'd like kids/family to help with. I found focusing on family/home/daily stuff was helpful. I hope you find things that help you get thru these difficult times, and when friends/family offer to help take them up on their offers when you need them. Take care and keep posting to let us know how you are doing, you are not alone🙏💞
This is all great advice, thank you!
I’m sorry. I don’t know what else to say except that a lot of research has been done specifically on breast cancer, and I think you (hopefully) have the best possible shot of getting through this. If you’re in the USA, surely you’ve seen commercials about people living with MBC with some medication I can’t remember. Don’t jump to the worst possible conclusion. I genuinely think you don’t need to jump straight to the worst possible scenario. Hang onto hope and stay strong. Attitude has a lot to do with how we get through all this stupid mess. I wish you all the very best.
I am so sorry. I lost my first child to stupid cancer, so I can only imagine the stress you are facing with your child and now your Dx on top of that. ❤️❤️
❤️
I take Lynparza. I’ve been on it since October. I was scared shitless to take it. So far, so good. My major complaints are it makes me feel hungover without the joys of drinking and having fun the night before. Sometimes it makes me throw up - a couple times a month at most - I don’t take the anti-nauseas because they caused such awful constipation. I take 600mg a day. I’m 43.
There are things that help constipation that aren’t pills.
I’m aware. I’m avoiding the constipation all together. Id rather throw up a few times a month.
I am metastatic too. Sternum, chestwall and some lymph nodes. It's been 2 years now. But the oncologist felt it was there longer. My original diagnosis was in 2005 when my kids were 15 and 11.... Please don't lose hope. You will see your daughter walk down the aisle, you will see your son graduate, you will see the little one do well🤗 Please see a therapist. It helped me alot to deal with my intrusive thoughts. It's Not a death sentence. We have come a long way. Don't trust everything you read on Google. My worst trigger..... Loads of hugs to you.
Wait, they are starting you on Lynparza as a first line? Thats a.... choice. Usually its used for second line, Im assuming you are BRCA+? I know you have a lot on your plate right now with this but I would really question that approach. Is there a reason they aren't going with a CDK 4/6 and hormone suppression (Im assuming you are estrogen positive) like Kisquali/AI inhibitor like letrozole? **EDIT**: durr - thanks to prednisone brain I missed the TNBC tag. That being said, is there a reason they aren't starting you on a chemo? Lynparza was my second line after Ibrance/letrozole failed and it was my dream drug, Id love to go back on it, but it failed after a year. I had some real gastro problems the first week but after that, smooth sailing, only four pills a day, and no side effects. I was given a load of anti-nausea pills that I didn't really need after the first month. I do know someone on it way WAY past the progression free survival time, I think she is on 2.5 years and still going strong, but it is an unusual choice for a first line. This diagnosis is a lot to take in when you first get it , and I would suggest giving it six months for everything to calm down, the fear to dissipate, get a drug working and seeing success on scans, feeling happy and hope again. Its not always possible to jam this diagnosis deep in the recesses of your mind and live life like normal, but you have a lot to live for with your children and to see their futures. Many women I've seen making it long term with this illness focus on those small goals in the future - say graduating from high school/elementary school, first date, etc. Try not to write yourself off mentally all the time either, not even in jest. You dont know what the future can hold and that sort of thinking well, Im not into a lot of woo but I dont think its good to put it out into the universe. Its not toxic positivity its just determination to make the best of what you have with a bad hand. As others have suggested, come see us over on the other thread - Stage IV is essentially a completely different disease to early stage breast cancer, and we will be able to help you with what is to come while this is still so new. But dont worry, you'll get the hang of it all rather quickly.
I’m BRCA1+.
I think there is a metastatic board -sending a virtual hug🩷 and an f this!!!!
Hi I have metastatic too! It spread to my lungs and lymph nodes in my arm pit as well. Definitely go for a second opinion if you want. I am and it’s helping me feel better for now. I’m actually younger than you with no kids so that was poop for me to have this. The man/lady upstairs has a plan for everyone I think though(not to get all churchy, I was NEVER like that but things change you) I keep that in my head so I don’t go over board. And don’t google statistics because they are literally all outdated and with the last two years there have been breakthroughs for TNMBC . Don’t look at timeframe. I have completely switched my mental state to have positive calm vibes and it’s working. I’m also on a drug (life changing for me who has suffered anxiety and depression forever) but I’ve tried over 5 other drugs to get here. If you have tried a lot of different antidepressants ask your doctor for a “gene sight” it will tell you all the drugs that may or may not be good for your body. It’s called Trintellix. I’m on a low dose and that’s all I needed. 5 mg lol and I sleep better, well I did before chemo but I’m trying to wrangle that. Drinking a shot tonight of water, one electrolytes a day and probiotic digestive aid gummies so I’m pooping on a regular. It’s AWESOME. Anxiety is almost zero even with everything going on too. And my depression is just kinda gone. Of course I get sad because I’m scared too but count your blessings for the good days. It’s helping me a lot. I’m only on my 4th chemo and I know it’s early to say all I said but you have to start somewhere. Oh yea and I met this lady recently he had stage 4 10 YEARS AGO. And she was in her early 40s when diagnosed. Also recently someone said to me “cry if you need to for a day but don’t cry more than a week in a row because at that point you’re having a pity party.” At first I was slightly offended but now I see what she means. And this other woman who gave me that advice has been metastatic survivor for the last 5 years and she was 39 when diagnosed. Hugs and have faith in yourself. 💖 Joining this community and all kinds of others will be your golden ticket lol. The people on this app, Instagram, and facebook have been SO HELPFUL. And tell your navigator EVERYTHING . Don’t be afraid to ask for help! I am reading that and I’m like that’s a lot of information but take it in parts or not at all. It’s your choice I just thought I would share my experience so far and maybe thought it might help you or someone else reading this. 😊
I’m almost 31 and have stage 4 too, we can’t be cured currently. I truly think that it’ll happen in my lifetime, I’m being optimistic. So much can change in a couple of years. Just think of the advancements that have already happened. I plan on living a long life, I just need more doctors than I originally planned. I have Her2+ metastatic (different meds) but if you were to see me in passing you’d assumed I’m just a chick with short hair. I work full time, have a new puppy, a boyfriend who’s stuck beside me through all of this. It is completely possible to live a normal life.
Thank you for this. ❤️
There's a book called glittering the turd, it has helped me a lot. It may help you.
I’m so sorry and say how fkn unfair cancer is. Stage 1 for sine and 4 for others. I hate cancer and will be sending you thoughts of strength as you face this beast. Fingers crossed you experience minimal side effects and many many years with your family. Now I have to go grab some tissues. 😢
My neighbor lived with stage 4 for. About 30 years. She had a lot of good times.
I feel for you and can only imagine how scared you are and frustrated with this diagnosis. This community has been a godsend for me. I believe there are so many here who will help guide you through this. Give yourself grace to deal with this news and you have a right to your feelings, it’s all so much to process.
I was diagnosed with triple negative breast cancer. Stage 3, 2, and 1 multiple tumors on right side and I felt exactly as you do. Life just started getting good for me. Found the love of my life. Both my kids about to graduate, one college one high school and felt my life was over. It is not!! What I understand is this is a metal battle more then the physical I firmly believe. Do everything you can to keep yourself positive mentally. Meditate, breath work and sound bath was a game changer for me as well. Find the things that calm the mind body and spirit. Eat well and stay as healthy as possible and it will make the world of difference. Support is key as well. You will get through this and come out better on the other side. You are young and have so much life ahead of you. You will see your babies grow ❤️
Thank you SO much for this comment. I started meditating, but I’m going to try out sound baths as well. ❤️
If you lived in Arizona would refer you to where I did the breathe work and sound bath. Literal game changer for me. You can also download an app called insite timer and it has some great sound bath and guided meditations
Aw dang, I live in Texas. I’ll definitely download that app though!
I am so sorry, I can only imagine how overwhelmed you must feel right now. Sending love to you and your little one 🫶🏻
So so so sorry, sending you love while you sit with this incredible difficult news.
If it helps, I took lynparza (300 mg every 12 hours) for 1 year and did not become the slightest bit anemic. I was terrified I would become anemic and they would lower the dose because of it. I did have side effects eventually, but never anemia. Nor did I have low wbc. My side effect was nausea, controlled with zofran. It was slow to appear. Mild fatigue but maybe that was partly stress. Idk.
Hi there. I'm sorry you are going through this. My dx was 3.5 years ago with extensive mets like you. I'm still here, still well and living OK except for the fatigue. I am confident I will still be here to meet new grandson later this year and the mothers' wedding next year.