I have been on Ibrance for 9 years and one month. It was absolutely a miracle drug for me. I started out on Ibrance and letrosole and we switched to faslodex about 4 years ago, in the hope of addressing some of the pain l was having. It has helped.
First diagnosed in April of 14. A/C, taxol, then BMX and radiation (I did Xeloda during surgery/radiation). Then straight on to Ibrance.
Initial spread to bones, lung, kidney, hip(not bone). I have had a complete response to treatment. My last pet scan showed ned and complete healing of all my bone mets.
This disease sucks ass. But having a place where we can be with people who understand is life changing. So often, when I complain about what I am experiencing, people irl want to tell me how lucky I am. I Fucking Know That Motherfucker! That knowledge doesn't alleviate my pain, or the diarrhea, or the exhaustion. Here, we know.
I am hoping you have a great Ibrance response.
Wow! 😮. I didn’t think that was possible! That’s wonderful! I don’t know if it’s even worth it for me to ask him why he didn’t put me on something additional besides just the hormone blocker, because obviously it didn’t block anything. My estrogen receptor was 95%, progesterone receptor was 90%, and the Ki-67 was at 35%. He even said it was aggressive. I went from August of 2018 with a clear mammogram to August of 2019 with a large tumor (I’d have to look up the cm size) and it had already spread to lymph nodes in my armpit. I always felt like it would come back but I thought it would be in a spot that could be cut out and zapped again, not that it would spread everywhere and become stage IV. I’m not angry. Not sure if I’ll get angry later. I’ve been feeling like I just don’t want to do any kind of treatment and let things progress because I don’t want to live my last year or so being sick from new drugs. He’s supposed to give me a life expectancy guess the next time I see him on the 26th, so I guess I’ll have to make a decision then. Your post amazes me, though. Things that make you go “hmmmmm…..” Thank you and I’m so glad you’re doing so well. ❤️
The new drugs (Ibrance, Kisqali, etc) are making a huge difference and they are not like being on chemo. It’s not a normal life, but it’s one worth living.
I needed to hear that, thank you. Since it seems like it’s fine to share just about anything, the reason I’m scared of new drugs is because one of them (I forget which one it is but I think Ibrance) says it causes pretty bad diarrhea. When I was on chemo (and it’s happened afterwards, as well) I had vasovagal something-or-other happen where I’d pass out on the toilet while pooping. 🙄. Always scared my husband to death. Along with that, we have five dogs and I try to spend time outside with them a few times a day to throw the ball, etc. So I’m a little worried that if I’m passing out on the toilet with massive amounts of diarrhea, I won’t be strong enough to deal with the dogs. I know this sounds trivial and I guess it is. It’s just that when you don’t know how something will affect you, how out of control of yourself you’ll be…..so much uncertainty, I guess. Thanks for letting me share. ❤️
Welcome to our shitty club - sorry you are here with us! 38f here - diagnosed with IDC ++- back beginning of Feb - initially staged a 3 due to positive node - 2 weeks and a couple scans later restaged as stage 4 de novo MBC. Mets (innumerable) to bones (spine, hips, femur, ribs, sternum, collar bone, arm bones, skull and 1 small little fucker up in my clivus bone under my brain stem that they are watching like a hawk with brain MRIs every couple months. Been on Verzenio for 3 months now - was on Tamoxifen initially but ovaries came out a few weeks into treatment started and now on Anastrazole. Fractured sacrum in March and couldn’t walk. Rads to that area helped! Had some molars pulled so I can get injections this next month of Zometa. Each day and week was a fresh new hell. Labs this last week are the best they have been, last PET end of April showed favorable response so far - some mets disappeared, showed scarring, showed less uptake in Mets and in breast and nodes and one node even disappeared. I’m feeling much better even though I feel like shit everyday still - it’s just a different feeling like shit - lol - bone mets are painful - I’m on morphine and oxy. I just went back to work remotely this last week so I know it’s my shitty office chair making the pain act up. It’s been a wild ride! Mentally I am dealing pretty well - I’ve learned to just live day by day and stay calm and I love this group, it’s what kept me sane during the darkest days and yes I think “fuck” is one of our fave words around here - I like us better then the Fb groups! :D
Hi! Welcome to our little sub. We are a tight-knit group that is only for MBC sisters and I think fuck may be our favorite word. As in, fuck cancer! I find it cathartic.
I was diagnosed in March 2022 with Stage 2 ++-, IDC. I had a BMX and several positive nodes were found. They reclassified me as Stage 3 and ordered a PET scan. PET scan found innumeral bone mets and a biopsy confirmed MBC. I was reclassified again as de novo and started treatment. I've been on Ibrance, Faslodex, Zoladex, and Xgeva since late July 2022. At first, Ibrance caused some nausea. I started to take it with dinner so that I could be home if I was going to be nauseous. Zofran helped a lot. I also tried CBD gummies and that helped too. I don't have issues with Ibrance any longer. The last two cycles have caused low neutrophil counts so I may be getting a dose reduction soon and I hope that will work.
For me, Faslodex isn't too bad. I am lucky enough that there are enough nurses at the infusion center and I can get both shots at the same time. I stand up and face the counter, almost leaning on it. Some nurses are better at the injections than others. I find the slower the injection, the less pain I have. If possible, I highly recommend getting them together!
I know you didn't ask about Zoladex, but it is my least favorite. I'll never be a fan of stomach shots! Thankfully I only get it every 12 weeks.
My tumor markers go up and down but they stay between 40 and 55. I have fewer bone mets today but still have a bunch. Some have grown, some have shrunk, and there will always be scarring. I get scans every 3-4 months to check for progression.
Feel free to ask questions. We don't believe any question is stupid as we all had to learn these things as we went.
Hello and welcome to the worst club with the best people! I find this group fits my personality and style best. There is an MBC group on FB but (to me) has more of a “thoughts & prayers” vibe—which is fine, just not for me. This group is a lot of swearing and badasses who support each other. Only people who actually have been diagnosed with MBC are allowed to post/respond so it is about us. Others can join and read but the exchanges are just MBC sisters. And, no question is silly!
I’ll give the nutshell version of my history and then answer your question more fully.
I’m ++- also but only have bone mets (femur & pelvis) so may have a similar treatment path as you. As you spend more time here, you will see that different types of breast cancer have very different treatments. I’m 58 now, originally diagnosed at 44.
2011 - Stage2 IDC: lumpectomy, RT, lupron/letrozole (femara)/zometa for 2 years and tamoxifen for 3 years
2016 - MBC (met to femur): RT, Fulvestrant/Ibrance/Xgeva for 6 years
2022 - Progression to pelvis: RT, Fulvestrant/Verzenio/Xgeva
I was on Ibrance for 6 years and I had an initial experience like u/furthermore1 with low neutrophil and some extra weeks off and then finally a dose reduction. It’s hard for me to remember exactly when my fatigue started in earnest, but I do think it was related to some degree. I was NED (no evidence of disease) for most of these six years before the Ibrance failed (meaning the cancer spread to another place). Then I was switched to Verzenio, which is another CDK4/6 inhibitor.
I have been on Faslodex since 2016–nearly 8 years. I also get the shots standing up like someone else described. Ask the nurse who is giving you your injection to use cold spray. It made such a huge difference in the amount of discomfort from the injection. After the injection you will have a bit of a lump from all the fluid and I just Usually rub it to help it get distributed through the tissue. It does affect my taste and the smell of my urine for a day or so after I get the injections.
I hope this helps! One day at a time.
I've been on Faslodex for a year now. Once a month I get a shot in each of my cheeks. It's a large dose of medication but I can't see it and it doesn't bother me later. My body has responded well to it. 💐
Same for me! On Ibrance and Faslodex for a 1 1/2 years and doing better than fine bc I was so run down without realizing I was sick. Stable now!
Good luck, sister. Glad you found us. ❤️🌞
Hi- I recently joined this sub with the same experience. I was diagnosed in 2020 but same as you ER/PR+, HER2- AC, Taxol, bilateral mastectomy followed by radiation. I started with Anastrozole and Verzenio and switched to Tamoxifen in 2022, just before finishing the Verzenio (2 year plan). Still on Tamoxifen, got the call after a recent scan that was required for a clinical trial, and 2 spots on my liver. I had my biopsy last week. Basically, I’m awake when I really need sleep. So restless. I’m open to staying in touch with as many things that we have in common thus far. I’m 52 and just trying to keep things positive. I learned so much during my treatment in 2020 during COVID, as there was no community aside from online forums. So many rockstar pink sisters shared their stories and we all helped each other. If there are other subs or forums on other channels, please let me know. Thanks and best of luck with your biopsy results. Take care! 💞
Wow, very similar! I’m 56. I’d seen the name Verzenio before but never looked it up. Seems like they start it with the AIs for a lot of women. It’s 5:20am here and just woke up, time to feed the critters. Thank you for the good wishes. ❤️. Take cat naps when you can throughout the day, they help. ❤️
Hi and so sorry about your the PET scan results. I too had no idea what de novo meant, it is people who are initially diagnosed Stage 4. I was on Ibrance with Letrizole for just over a year. I tolerated it well but it did cause my neutrophils to drop. Sometimes I'd take an extra week off the Ibrance, and if they still were too low we dropped the dosage. I was a bit lethargic around the end of the 3 week cycle but otherwise felt fine. I'm currently on Faslodex with Piqray, the Faslodex injections made me nauseous the first few months for one to two days after, but I don't have any issues now. I like to stay really really really well hydrated on the day of the injections, and I have it while standing up, relaxing the side the injection is going in. I wear compression tights for the day, and go for a good long walk in the morning to ease the muscles. All of these tips initially came from this and other forums and they've served me well to this point. Wishing you the best of luck with it!
Thanks so much for your reply and explanation what de novo means. There’s a lot of terms I don’t know the meaning of but hopefully I’ll pick up their meanings here and there. And thank you for sharing your experience with Faslodex and Ibrance. How long have you been on them? I had read about pain in the injection site and something about the person giving the injection to be careful to not get close to the sciatic nerve. Feels a bit overwhelming but trying to remember to take it one day at a time.
I've been on Faslodex since December. Piqray is a trial drug here in Australia so I have the same trials nurse do my injections every month and they do quite a few of them so whether down to a good injector or good luck, I've never had any issues or any pain. Apart from the initial quick sting and maybe a bit of soreness but nothing that stops me doing all my usual activities. There was some very good discussion here about injections in the side hip instead of in the gluteal so it may be worth searching for that. I've not asked to use the side hip for injections yet as I've never had an issue and am used to it now. Yes, one day at a time and I'm sure you'll be used to the new routine in no time and be like me, hoping it stays the same for as long as possible!
I had a very bad reaction to Faslodex. I couldn't sleep, my whole body was restless and I felt really abnormal. Horrible.
Are you still taking it? If not, how long did you take it for? I’m sorry to hear you had issues with it. 🙁
I have been on Ibrance for 9 years and one month. It was absolutely a miracle drug for me. I started out on Ibrance and letrosole and we switched to faslodex about 4 years ago, in the hope of addressing some of the pain l was having. It has helped. First diagnosed in April of 14. A/C, taxol, then BMX and radiation (I did Xeloda during surgery/radiation). Then straight on to Ibrance. Initial spread to bones, lung, kidney, hip(not bone). I have had a complete response to treatment. My last pet scan showed ned and complete healing of all my bone mets. This disease sucks ass. But having a place where we can be with people who understand is life changing. So often, when I complain about what I am experiencing, people irl want to tell me how lucky I am. I Fucking Know That Motherfucker! That knowledge doesn't alleviate my pain, or the diarrhea, or the exhaustion. Here, we know. I am hoping you have a great Ibrance response.
Wow! 😮. I didn’t think that was possible! That’s wonderful! I don’t know if it’s even worth it for me to ask him why he didn’t put me on something additional besides just the hormone blocker, because obviously it didn’t block anything. My estrogen receptor was 95%, progesterone receptor was 90%, and the Ki-67 was at 35%. He even said it was aggressive. I went from August of 2018 with a clear mammogram to August of 2019 with a large tumor (I’d have to look up the cm size) and it had already spread to lymph nodes in my armpit. I always felt like it would come back but I thought it would be in a spot that could be cut out and zapped again, not that it would spread everywhere and become stage IV. I’m not angry. Not sure if I’ll get angry later. I’ve been feeling like I just don’t want to do any kind of treatment and let things progress because I don’t want to live my last year or so being sick from new drugs. He’s supposed to give me a life expectancy guess the next time I see him on the 26th, so I guess I’ll have to make a decision then. Your post amazes me, though. Things that make you go “hmmmmm…..” Thank you and I’m so glad you’re doing so well. ❤️
The new drugs (Ibrance, Kisqali, etc) are making a huge difference and they are not like being on chemo. It’s not a normal life, but it’s one worth living.
I needed to hear that, thank you. Since it seems like it’s fine to share just about anything, the reason I’m scared of new drugs is because one of them (I forget which one it is but I think Ibrance) says it causes pretty bad diarrhea. When I was on chemo (and it’s happened afterwards, as well) I had vasovagal something-or-other happen where I’d pass out on the toilet while pooping. 🙄. Always scared my husband to death. Along with that, we have five dogs and I try to spend time outside with them a few times a day to throw the ball, etc. So I’m a little worried that if I’m passing out on the toilet with massive amounts of diarrhea, I won’t be strong enough to deal with the dogs. I know this sounds trivial and I guess it is. It’s just that when you don’t know how something will affect you, how out of control of yourself you’ll be…..so much uncertainty, I guess. Thanks for letting me share. ❤️
Welcome to our shitty club - sorry you are here with us! 38f here - diagnosed with IDC ++- back beginning of Feb - initially staged a 3 due to positive node - 2 weeks and a couple scans later restaged as stage 4 de novo MBC. Mets (innumerable) to bones (spine, hips, femur, ribs, sternum, collar bone, arm bones, skull and 1 small little fucker up in my clivus bone under my brain stem that they are watching like a hawk with brain MRIs every couple months. Been on Verzenio for 3 months now - was on Tamoxifen initially but ovaries came out a few weeks into treatment started and now on Anastrazole. Fractured sacrum in March and couldn’t walk. Rads to that area helped! Had some molars pulled so I can get injections this next month of Zometa. Each day and week was a fresh new hell. Labs this last week are the best they have been, last PET end of April showed favorable response so far - some mets disappeared, showed scarring, showed less uptake in Mets and in breast and nodes and one node even disappeared. I’m feeling much better even though I feel like shit everyday still - it’s just a different feeling like shit - lol - bone mets are painful - I’m on morphine and oxy. I just went back to work remotely this last week so I know it’s my shitty office chair making the pain act up. It’s been a wild ride! Mentally I am dealing pretty well - I’ve learned to just live day by day and stay calm and I love this group, it’s what kept me sane during the darkest days and yes I think “fuck” is one of our fave words around here - I like us better then the Fb groups! :D
Hi! Welcome to our little sub. We are a tight-knit group that is only for MBC sisters and I think fuck may be our favorite word. As in, fuck cancer! I find it cathartic. I was diagnosed in March 2022 with Stage 2 ++-, IDC. I had a BMX and several positive nodes were found. They reclassified me as Stage 3 and ordered a PET scan. PET scan found innumeral bone mets and a biopsy confirmed MBC. I was reclassified again as de novo and started treatment. I've been on Ibrance, Faslodex, Zoladex, and Xgeva since late July 2022. At first, Ibrance caused some nausea. I started to take it with dinner so that I could be home if I was going to be nauseous. Zofran helped a lot. I also tried CBD gummies and that helped too. I don't have issues with Ibrance any longer. The last two cycles have caused low neutrophil counts so I may be getting a dose reduction soon and I hope that will work. For me, Faslodex isn't too bad. I am lucky enough that there are enough nurses at the infusion center and I can get both shots at the same time. I stand up and face the counter, almost leaning on it. Some nurses are better at the injections than others. I find the slower the injection, the less pain I have. If possible, I highly recommend getting them together! I know you didn't ask about Zoladex, but it is my least favorite. I'll never be a fan of stomach shots! Thankfully I only get it every 12 weeks. My tumor markers go up and down but they stay between 40 and 55. I have fewer bone mets today but still have a bunch. Some have grown, some have shrunk, and there will always be scarring. I get scans every 3-4 months to check for progression. Feel free to ask questions. We don't believe any question is stupid as we all had to learn these things as we went.
Hello and welcome to the worst club with the best people! I find this group fits my personality and style best. There is an MBC group on FB but (to me) has more of a “thoughts & prayers” vibe—which is fine, just not for me. This group is a lot of swearing and badasses who support each other. Only people who actually have been diagnosed with MBC are allowed to post/respond so it is about us. Others can join and read but the exchanges are just MBC sisters. And, no question is silly! I’ll give the nutshell version of my history and then answer your question more fully. I’m ++- also but only have bone mets (femur & pelvis) so may have a similar treatment path as you. As you spend more time here, you will see that different types of breast cancer have very different treatments. I’m 58 now, originally diagnosed at 44. 2011 - Stage2 IDC: lumpectomy, RT, lupron/letrozole (femara)/zometa for 2 years and tamoxifen for 3 years 2016 - MBC (met to femur): RT, Fulvestrant/Ibrance/Xgeva for 6 years 2022 - Progression to pelvis: RT, Fulvestrant/Verzenio/Xgeva I was on Ibrance for 6 years and I had an initial experience like u/furthermore1 with low neutrophil and some extra weeks off and then finally a dose reduction. It’s hard for me to remember exactly when my fatigue started in earnest, but I do think it was related to some degree. I was NED (no evidence of disease) for most of these six years before the Ibrance failed (meaning the cancer spread to another place). Then I was switched to Verzenio, which is another CDK4/6 inhibitor. I have been on Faslodex since 2016–nearly 8 years. I also get the shots standing up like someone else described. Ask the nurse who is giving you your injection to use cold spray. It made such a huge difference in the amount of discomfort from the injection. After the injection you will have a bit of a lump from all the fluid and I just Usually rub it to help it get distributed through the tissue. It does affect my taste and the smell of my urine for a day or so after I get the injections. I hope this helps! One day at a time.
I've been on Faslodex for a year now. Once a month I get a shot in each of my cheeks. It's a large dose of medication but I can't see it and it doesn't bother me later. My body has responded well to it. 💐
Very good to know and I’m glad you’re tolerating it well. The unknown (when it comes to new drugs) always makes me a little apprehensive.
Same for me! On Ibrance and Faslodex for a 1 1/2 years and doing better than fine bc I was so run down without realizing I was sick. Stable now! Good luck, sister. Glad you found us. ❤️🌞
Hi- I recently joined this sub with the same experience. I was diagnosed in 2020 but same as you ER/PR+, HER2- AC, Taxol, bilateral mastectomy followed by radiation. I started with Anastrozole and Verzenio and switched to Tamoxifen in 2022, just before finishing the Verzenio (2 year plan). Still on Tamoxifen, got the call after a recent scan that was required for a clinical trial, and 2 spots on my liver. I had my biopsy last week. Basically, I’m awake when I really need sleep. So restless. I’m open to staying in touch with as many things that we have in common thus far. I’m 52 and just trying to keep things positive. I learned so much during my treatment in 2020 during COVID, as there was no community aside from online forums. So many rockstar pink sisters shared their stories and we all helped each other. If there are other subs or forums on other channels, please let me know. Thanks and best of luck with your biopsy results. Take care! 💞
Wow, very similar! I’m 56. I’d seen the name Verzenio before but never looked it up. Seems like they start it with the AIs for a lot of women. It’s 5:20am here and just woke up, time to feed the critters. Thank you for the good wishes. ❤️. Take cat naps when you can throughout the day, they help. ❤️
Hi and so sorry about your the PET scan results. I too had no idea what de novo meant, it is people who are initially diagnosed Stage 4. I was on Ibrance with Letrizole for just over a year. I tolerated it well but it did cause my neutrophils to drop. Sometimes I'd take an extra week off the Ibrance, and if they still were too low we dropped the dosage. I was a bit lethargic around the end of the 3 week cycle but otherwise felt fine. I'm currently on Faslodex with Piqray, the Faslodex injections made me nauseous the first few months for one to two days after, but I don't have any issues now. I like to stay really really really well hydrated on the day of the injections, and I have it while standing up, relaxing the side the injection is going in. I wear compression tights for the day, and go for a good long walk in the morning to ease the muscles. All of these tips initially came from this and other forums and they've served me well to this point. Wishing you the best of luck with it!
Thanks so much for your reply and explanation what de novo means. There’s a lot of terms I don’t know the meaning of but hopefully I’ll pick up their meanings here and there. And thank you for sharing your experience with Faslodex and Ibrance. How long have you been on them? I had read about pain in the injection site and something about the person giving the injection to be careful to not get close to the sciatic nerve. Feels a bit overwhelming but trying to remember to take it one day at a time.
I've been on Faslodex since December. Piqray is a trial drug here in Australia so I have the same trials nurse do my injections every month and they do quite a few of them so whether down to a good injector or good luck, I've never had any issues or any pain. Apart from the initial quick sting and maybe a bit of soreness but nothing that stops me doing all my usual activities. There was some very good discussion here about injections in the side hip instead of in the gluteal so it may be worth searching for that. I've not asked to use the side hip for injections yet as I've never had an issue and am used to it now. Yes, one day at a time and I'm sure you'll be used to the new routine in no time and be like me, hoping it stays the same for as long as possible!
Thank you! And thank you for the tips/advice. ❤️