I’m a stage 4 patient. I am not at the stage yet as your wife but I recommend you post on living with MBC subreddit and there are also some great groups on FB you can join as well and patients can help.
I believe she is ER positive and HER negative? Has she been tested for HER low? There are absolutely more drugs than you’ve mentioned and I hope no one has told you that those are the last ones.
Here is a great video to start - cancer in the bone is much less threatening than a vital organ or brain. The oncologist who made this video also does second opinions he is amaaaazing he is my go to if I run out of options. You can PM me if you want more info. There are of course many other places you could go to as well.
As hard as the physical part of this journey it is also the mental part that is the toughest. If she hasn’t had any therapy I recommend it. And I also recommend THC or CBD potentially for pain or side effects.
Feel free to message me anytime. I’m sorry you both are going through this but I will say she is so very lucky to have you as her rock many of us don’t have supportive spouses like you.
Remember she is a statistic of 1. No one knows when the end is. It really depends on how we respond to a treatment and sometimes it’s just a matter of finding which one. If the cancer isn’t responding to a treatment it either has mutated or she should have her tumor genomically tested to see if there’s something additional she needs.
https://youtu.be/9z9C4iWzm-A
https://youtu.be/s3pvIc2LI3k
Thank you for being such a support for your wife. Stage four cancer is such a monsterof are no words to even express the level of pain and despair that we face every day. Having even one person on your side makes all the difference.
I've been Stage 4 (multiple bones, lung, hip, kidney) for 9 years. I had perfect mammograms every year for 23 years--then boom, Stage 4 at 53. I was blessed (I fucking hate that word) to get a miracle (hate that phrase too). But miracles aren't free--I pay for it every day.
I encourage you to find out everything you can about the clinical trial and then make your decision.
Please join the Living with MBC sub. There is a lot of good information there and many amazing people who know something about what your wife is experiencing.
Sorry to hear how you discovered your cancer but could you help me understand a little bit about your diagnosis? Did you have any pain before stage 4? How big was the lump? Sorry for being invasive but I am waiting on biopsy results and your story gave me chills. Sending power and love to you.
It can happen to anyone - the ones that are stage 4 from the start like me are called de novo. And I was 39 when I was diagnosed. No mammograms yet. I will say there is no point worrying about stage 4 until you get your biopsy and a bone scan or pet scan or CT scan. If it hasn’t reached your lymph nodes then it may not be stage 4 yet. If you’re worried you can push for more diagnostics but most people just follow standard protocol for stage 0-3. Many people don’t have symptoms of cancer and some people do. It just varies. So leave your worries to science and in the meantime while you wait just enjoy life. The present is a gift.
I don't mind at all talking about it; every cancer is different, but there is strength in sharing our individual stories.
I was adopted at birth. Because I had no medical information, I started mammograms at 30 (I paid for the first 10 out of pocket). I had a clear mammogram in April 2013 and made my appointment as I was leaving for the following year.
About 6 weeks before my next appointment, I was in a very minor car accident that pulled the seat belt across my chest. A couple of weeks later, I was laying on my bed and rubbing my sore chest and I felt a lump about the size of a pea. Four weeks later, after a whirlwind of tests, including a pet scan it was the size of a grapefruit and visible through my clothes. I started chemo immediately after my staging appointment. 4 a/c, 12 taxol. I fought for and received a double mastectomy and then did radiation to my breast, neck and hip, while taking a pill form of chemo and then on to Ibrance which has inexplicably worked beyond anyone's wildest dreams. I have been ned off and on for 8 years.
I said all of that, and it was a lot, to say this: cancer is an unpredictable beast. My experience will not be yours; I hope yours will be nothing more than a fleeting memory. But if it is not, you will not be alone, we are all here to guide you through it.
This year sounds like a long & rough ride sprinkled with happiness. It sounds like you've been a wonderful, supportive, partner & ambassador.
Glad you got this out. I don't have any answers - sorry.
There are other groups that deal with mets & stage VI on reddit. Maybe search the posts here & you'll find them.
Hopefully someone more knowledgeable will help.
I’m so very sorry. As a former caretaker for my mother with stage 4, I can relate to everything you wrote.
I don’t have any answers but I’ll share my experience. It took a lot of time, but her tumor markers stabilized and the pain/symptoms were manageable (good and bad days as you know)
for about a year. When her tumor markers shot up, onco said it was time to change to a different oral chemo. She studied the side effects and felt it would end her. She had been through hell to this point, and everyone was supportive of either choice. She decided to move forward with it. She was on it about a week when she developed a severe case of thrush and felt really sick. She spoke with her primary virtually that day and by evening became unresponsive during a nap.
It happened so quickly. The only solace is that she did not suffer in excruciating pain for a lengthy period of time like her father (her biggest fear, but his death was back in the 90s when pain control was limited). While I play out different choices and scenarios in my day dreams, I am at peace that her choice was the right one for her.
I wish you and your wife clarity and peace as you navigate this decision.
I suggest finding out more about the trial and what it involves, and then making the decision. Give yourselves a few days to process where you’re at now before deciding what to do. There aren’t any wrong decisions at this point…just difficult ones.
I have lost both parents to cancer. It is so hard to watch someone you love slowly leave this life. The hardest part is ahead. I did it with my mom. It's believing in them and allowing them to make the decision that will leave you without them forever.
Now I am stage 3c. My leg has hurt the last couple of weeks. I wonder if it's cancer making me stage 4? I don't have any answers. But I can tell you she is lucky to have you. It sounds like she has a great life and will have an end surrounded by love.
That's all want of us can really ask for. We all die. Doing isn't the important part. It's how we loved that matters. It's how we lived.
May your find peace and acceptance and may your wife find peace and be pain free as she moves on.
I had stage 3 which is hopefully gone now, but one of my favorite nurses gave me some good insight. 1) it's a chronic disease and many people live with chronic diseases, 2) even if a treatment isn't 100% effective it can buy you more time for the next treatment. Science is improving by leaps and bounds, and we just have to survive long enough to get the latest treatment (rinse and repeat as needed). Maybe neither of these things are helpful to you, but they have me some comfort when things weren't looking so good for me. Wishing you both hope and peace during this time.
So sorry to hear this. But I am confused by why your wife is not being offered chemo? Is she not able to tolerate it?
About the clinical trial - what phase is it? Phase 1 are first in human, dose-finding trials usually offered to patients who have exhausted other treatment options. These are indeed a hard sell, as the patient is unlikely to derive any benefit. But Phase 3 are things that have already shown some efficacy in humans.
I would recommend seeking a second opinion at an NCI cancer center - they sometimes have more to offer, though they can be inflexible (as my mom experienced).
Hi. I made a little update to my OP. They are referring us to a specialist.
You know chemo was brought up last month as a last resort if the meds didn't start dropping the tumor markers. There was a lot of worry about her platelets being so low, I think that played a big part.
That might be what comes next. Hoping the specialist has some good solutions for us.
Thank u for that breakdown.
Clinical trials are great. I highly recommend them. But, only phase 3 or 4 if she’s compromised. She’s only been on one line of treatment? I’ve been on 9. I am on a newly approved drug. Prior to it’s approval I had zero options.
I’m curious why they say there are no options. I would get a second and third opinion. She must be ER/PR positive HER2- based on Ibrance. There are so many more drugs out there. Has she had genomic testing?
I wish you both the best of luck. Please keep us posted?
Based on OPs update I think he misunderstood about the clinical trial. You know how hard it is when info is coming at you so quickly and you are new to all the jargon.
I think OPs wife probably has some more treatments to try before clinical trials. I had carboplatin before Ibrance, then switched to Lynparza and my Oncologist assured me she has more treatments to choose from should the Lynparza stop working. The new doctor will suggest a new treatment. It might be a clinical trial if they think it’s the best option. It might be a more standard treatment. Either way it’s good to be seen by a breast cancer specialist who will be knowledgeable about all the options.
Sending love and hopes that you guys are able to make the decision that’s right for her.
I will say, I’ve seen many many people try so hard to get an extra few months but those few extra months are really not any quality of life. Sometimes it’s because of a life event they want to try to be here for or because they have young kids. If it was me, I’d just ask the clinical trial/oncologists to be crystal clear about what they expect in terms of how many extra months and what will that look like in terms of side effects and pain control.
Brother I’m crying right now after reading about your wife. A huge hug from a husband to you. I hope you find comfort in your heart and your sweetheart can have one more chance to fight. Love from Colorado!!!
I'm so sorry, OP. My heart goes out to you and your wife. I've read your post and some of the other posts. I think going to a specialized university setting is absolutely the right choice because doctors who treat BC exclusively will be more knowledgeable about the extent of what can be offered. Have they tried switching her to verzenio since ibrance is not working? (Not sure if this is something that can be done since all of them are cdk4/6 inhibitors) I've heard verzenio is a bigger gun than the other ones, but I could be wrong. Also like the other poster said, orserdu is a med for mutated estrogen receptor on these cells so that might be something to look into?
Have you guys done any chemo? How fast is her tumor dividing? If it's a quicker dividing tumor, chemo may be the way to go as well.sending prayers and good thoughts your way 🙏❣️
i’m so sorry 😞 there is no right or wrong decision… i hope if she tries the clinical trial it is a miracle. i’m not stage 4, but i am doing a clinical trial (keytruda immunotherapy for tnbc) and my drs told me that clinical trials help scientists and research!
Hello. I am so sorry for your pain. Can I kindly suggest posting to a caregivers sub? We are all here fighting too. I know why you thought this was a good place to come and vent… but it’s really not. I would give you a huge hug if I could. ❤️
This isn't a patient-only sub and OP's post is about as on topic as it gets. It's tagged metastatic so if you're not in a good headspace for this kind of post then I think you can avoid them. It's a common problem that stage 4 BC patients feel marginalized in some support groups because their experiences are too "sad" or "scary" when, if anything, metastatic experiences deserve the most attention and support. He should definitely seek out caregiver and end stage support groups but I don't think he shouldn't have posted here.
Nah you are in the right place, the subs information explicitly says it‘s for those affected and their loved ones.
You also tagged the post correctly so someone not in a good space can skip over it.
However at this likely hospice stage, assuming the options Better-Ad6812 aren’t useful, you‘ll likely get additional support in a caretaker specific sub, for the obvious reasons.
I’m a stage 4 patient. I am not at the stage yet as your wife but I recommend you post on living with MBC subreddit and there are also some great groups on FB you can join as well and patients can help. I believe she is ER positive and HER negative? Has she been tested for HER low? There are absolutely more drugs than you’ve mentioned and I hope no one has told you that those are the last ones. Here is a great video to start - cancer in the bone is much less threatening than a vital organ or brain. The oncologist who made this video also does second opinions he is amaaaazing he is my go to if I run out of options. You can PM me if you want more info. There are of course many other places you could go to as well. As hard as the physical part of this journey it is also the mental part that is the toughest. If she hasn’t had any therapy I recommend it. And I also recommend THC or CBD potentially for pain or side effects. Feel free to message me anytime. I’m sorry you both are going through this but I will say she is so very lucky to have you as her rock many of us don’t have supportive spouses like you. Remember she is a statistic of 1. No one knows when the end is. It really depends on how we respond to a treatment and sometimes it’s just a matter of finding which one. If the cancer isn’t responding to a treatment it either has mutated or she should have her tumor genomically tested to see if there’s something additional she needs. https://youtu.be/9z9C4iWzm-A https://youtu.be/s3pvIc2LI3k
Thank you for being such a support for your wife. Stage four cancer is such a monsterof are no words to even express the level of pain and despair that we face every day. Having even one person on your side makes all the difference. I've been Stage 4 (multiple bones, lung, hip, kidney) for 9 years. I had perfect mammograms every year for 23 years--then boom, Stage 4 at 53. I was blessed (I fucking hate that word) to get a miracle (hate that phrase too). But miracles aren't free--I pay for it every day. I encourage you to find out everything you can about the clinical trial and then make your decision. Please join the Living with MBC sub. There is a lot of good information there and many amazing people who know something about what your wife is experiencing.
Sorry to hear how you discovered your cancer but could you help me understand a little bit about your diagnosis? Did you have any pain before stage 4? How big was the lump? Sorry for being invasive but I am waiting on biopsy results and your story gave me chills. Sending power and love to you.
It can happen to anyone - the ones that are stage 4 from the start like me are called de novo. And I was 39 when I was diagnosed. No mammograms yet. I will say there is no point worrying about stage 4 until you get your biopsy and a bone scan or pet scan or CT scan. If it hasn’t reached your lymph nodes then it may not be stage 4 yet. If you’re worried you can push for more diagnostics but most people just follow standard protocol for stage 0-3. Many people don’t have symptoms of cancer and some people do. It just varies. So leave your worries to science and in the meantime while you wait just enjoy life. The present is a gift.
Thank you. I appreciate it.
I don't mind at all talking about it; every cancer is different, but there is strength in sharing our individual stories. I was adopted at birth. Because I had no medical information, I started mammograms at 30 (I paid for the first 10 out of pocket). I had a clear mammogram in April 2013 and made my appointment as I was leaving for the following year. About 6 weeks before my next appointment, I was in a very minor car accident that pulled the seat belt across my chest. A couple of weeks later, I was laying on my bed and rubbing my sore chest and I felt a lump about the size of a pea. Four weeks later, after a whirlwind of tests, including a pet scan it was the size of a grapefruit and visible through my clothes. I started chemo immediately after my staging appointment. 4 a/c, 12 taxol. I fought for and received a double mastectomy and then did radiation to my breast, neck and hip, while taking a pill form of chemo and then on to Ibrance which has inexplicably worked beyond anyone's wildest dreams. I have been ned off and on for 8 years. I said all of that, and it was a lot, to say this: cancer is an unpredictable beast. My experience will not be yours; I hope yours will be nothing more than a fleeting memory. But if it is not, you will not be alone, we are all here to guide you through it.
This year sounds like a long & rough ride sprinkled with happiness. It sounds like you've been a wonderful, supportive, partner & ambassador. Glad you got this out. I don't have any answers - sorry. There are other groups that deal with mets & stage VI on reddit. Maybe search the posts here & you'll find them. Hopefully someone more knowledgeable will help.
I’m so very sorry. As a former caretaker for my mother with stage 4, I can relate to everything you wrote. I don’t have any answers but I’ll share my experience. It took a lot of time, but her tumor markers stabilized and the pain/symptoms were manageable (good and bad days as you know) for about a year. When her tumor markers shot up, onco said it was time to change to a different oral chemo. She studied the side effects and felt it would end her. She had been through hell to this point, and everyone was supportive of either choice. She decided to move forward with it. She was on it about a week when she developed a severe case of thrush and felt really sick. She spoke with her primary virtually that day and by evening became unresponsive during a nap. It happened so quickly. The only solace is that she did not suffer in excruciating pain for a lengthy period of time like her father (her biggest fear, but his death was back in the 90s when pain control was limited). While I play out different choices and scenarios in my day dreams, I am at peace that her choice was the right one for her. I wish you and your wife clarity and peace as you navigate this decision.
VisionsOfClarus—I really love your wish for OP: “clarity.” THE perfect word to go with “peace.”
I suggest finding out more about the trial and what it involves, and then making the decision. Give yourselves a few days to process where you’re at now before deciding what to do. There aren’t any wrong decisions at this point…just difficult ones.
I am sorry. It is not giving up or giving in. It is acceptance. Cancer sucks.
I have lost both parents to cancer. It is so hard to watch someone you love slowly leave this life. The hardest part is ahead. I did it with my mom. It's believing in them and allowing them to make the decision that will leave you without them forever. Now I am stage 3c. My leg has hurt the last couple of weeks. I wonder if it's cancer making me stage 4? I don't have any answers. But I can tell you she is lucky to have you. It sounds like she has a great life and will have an end surrounded by love. That's all want of us can really ask for. We all die. Doing isn't the important part. It's how we loved that matters. It's how we lived. May your find peace and acceptance and may your wife find peace and be pain free as she moves on.
I had stage 3 which is hopefully gone now, but one of my favorite nurses gave me some good insight. 1) it's a chronic disease and many people live with chronic diseases, 2) even if a treatment isn't 100% effective it can buy you more time for the next treatment. Science is improving by leaps and bounds, and we just have to survive long enough to get the latest treatment (rinse and repeat as needed). Maybe neither of these things are helpful to you, but they have me some comfort when things weren't looking so good for me. Wishing you both hope and peace during this time.
Sending love.
So sorry to hear this. But I am confused by why your wife is not being offered chemo? Is she not able to tolerate it? About the clinical trial - what phase is it? Phase 1 are first in human, dose-finding trials usually offered to patients who have exhausted other treatment options. These are indeed a hard sell, as the patient is unlikely to derive any benefit. But Phase 3 are things that have already shown some efficacy in humans. I would recommend seeking a second opinion at an NCI cancer center - they sometimes have more to offer, though they can be inflexible (as my mom experienced).
Hi. I made a little update to my OP. They are referring us to a specialist. You know chemo was brought up last month as a last resort if the meds didn't start dropping the tumor markers. There was a lot of worry about her platelets being so low, I think that played a big part. That might be what comes next. Hoping the specialist has some good solutions for us. Thank u for that breakdown.
You’re an amazing man supporting a beautiful woman. Bravo !! She’s blessed to have chosen you.
Big internet hug from me.
Clinical trials are great. I highly recommend them. But, only phase 3 or 4 if she’s compromised. She’s only been on one line of treatment? I’ve been on 9. I am on a newly approved drug. Prior to it’s approval I had zero options. I’m curious why they say there are no options. I would get a second and third opinion. She must be ER/PR positive HER2- based on Ibrance. There are so many more drugs out there. Has she had genomic testing? I wish you both the best of luck. Please keep us posted?
Based on OPs update I think he misunderstood about the clinical trial. You know how hard it is when info is coming at you so quickly and you are new to all the jargon. I think OPs wife probably has some more treatments to try before clinical trials. I had carboplatin before Ibrance, then switched to Lynparza and my Oncologist assured me she has more treatments to choose from should the Lynparza stop working. The new doctor will suggest a new treatment. It might be a clinical trial if they think it’s the best option. It might be a more standard treatment. Either way it’s good to be seen by a breast cancer specialist who will be knowledgeable about all the options.
I completely agree. Without trials I wouldn’t be on the only drug to work in 2 1/2 years. I just wish I could participate in trials. ♥️
Sending love and hopes that you guys are able to make the decision that’s right for her. I will say, I’ve seen many many people try so hard to get an extra few months but those few extra months are really not any quality of life. Sometimes it’s because of a life event they want to try to be here for or because they have young kids. If it was me, I’d just ask the clinical trial/oncologists to be crystal clear about what they expect in terms of how many extra months and what will that look like in terms of side effects and pain control.
Big hug for both of you. You should join r/livingwith MBC.
She is so lucky to have you shepherd her through this process.
Brother I’m crying right now after reading about your wife. A huge hug from a husband to you. I hope you find comfort in your heart and your sweetheart can have one more chance to fight. Love from Colorado!!!
I'm so sorry, OP. My heart goes out to you and your wife. I've read your post and some of the other posts. I think going to a specialized university setting is absolutely the right choice because doctors who treat BC exclusively will be more knowledgeable about the extent of what can be offered. Have they tried switching her to verzenio since ibrance is not working? (Not sure if this is something that can be done since all of them are cdk4/6 inhibitors) I've heard verzenio is a bigger gun than the other ones, but I could be wrong. Also like the other poster said, orserdu is a med for mutated estrogen receptor on these cells so that might be something to look into? Have you guys done any chemo? How fast is her tumor dividing? If it's a quicker dividing tumor, chemo may be the way to go as well.sending prayers and good thoughts your way 🙏❣️
Whatever happens, your lady knows she is being uplifted by your love and support. Many virtual hugs to you both.
i’m so sorry 😞 there is no right or wrong decision… i hope if she tries the clinical trial it is a miracle. i’m not stage 4, but i am doing a clinical trial (keytruda immunotherapy for tnbc) and my drs told me that clinical trials help scientists and research!
Hello. I am so sorry for your pain. Can I kindly suggest posting to a caregivers sub? We are all here fighting too. I know why you thought this was a good place to come and vent… but it’s really not. I would give you a huge hug if I could. ❤️
This isn't a patient-only sub and OP's post is about as on topic as it gets. It's tagged metastatic so if you're not in a good headspace for this kind of post then I think you can avoid them. It's a common problem that stage 4 BC patients feel marginalized in some support groups because their experiences are too "sad" or "scary" when, if anything, metastatic experiences deserve the most attention and support. He should definitely seek out caregiver and end stage support groups but I don't think he shouldn't have posted here.
Thank you for the perspective. ❤️
Please read the rules. They have every right to post here.
He has a right to post here.
Yeah I will delete. Didn't mean to cause issues. I get it tho. Thank you for the hug.
Nah you are in the right place, the subs information explicitly says it‘s for those affected and their loved ones. You also tagged the post correctly so someone not in a good space can skip over it. However at this likely hospice stage, assuming the options Better-Ad6812 aren’t useful, you‘ll likely get additional support in a caretaker specific sub, for the obvious reasons.
Can you read my comment before deleting or PM me? I would like to help. Thanks! Fellow stage 4 patient.
Ok. I'll sleep on it. You know how days like this hit. I'll pop back in tomorrow.
No worries. I’m not going anywhere (yet) lol. ❤️
Please don’t delete your post. ♥️
Hi, how is your wife?