How long have you been Stage IV?
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Stage IV Since the Beginning in March 2024
Mets in Lungs, Sternum and Spine
Initial regimen was Abraxane with Keytruda and Zometa. Life altering side effects with Keytruda so now off it.
All these long-time survivorships are VERY inspiring and encouraging!
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@chicagoan - Thank you for your story because, so far, yours seems to be closest to my diagnosis. I am originally from Chicago and, boy, do I miss it! The hospitals are MUCH better up there than where I am now.
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@ssales13 we're so sorry to hear what you are going through and as many have echoed, we are sorry that you are here but glad you found us. We hope you can find support through our community. We also have virtual meetups for MBC that meet 3 times a week, one meets tonight, you are welcome to come to one or all, whichever fits your schedule. Thinking of you ♥️
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moderators thank you! I will definitely do the virtual meet ups. Do you all meet up on the same nights every week? And what time? Thank you
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@ssales13 I've been stage 4 about 4.5 years now, bone mets currently stable. The first few months passed like something out of a nightmare, sobbing a lot and could barely sleep... but once I got used to my treatments and regular scans, I found I could breathe and be calm (mostly) again.
Please allow yourself whatever you need to adjust to this new reality.
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@ Sf-cakes 4.5 years that’s great.Im glad you are stable and hope you stay that way for a long long time. Yes I can relate to the something out of a nightmare! Thank you for responding. I really appreciate it.
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@creena, Welcome to our community as well, although we're sorry for the reasons that first led you here. We do invite you to join our MBC Zoom meetups as well — where you can meet others with similar stories and find additional support. We are happy to have you here!
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@ssales13 - sorry you have to be here, but this is a great group of people here. When/if you want to talk about it, the Stage IV Zoom meet-ups are really good, too.
I was dx'd de novo with liver mets in June of 2020. I've been NED (No Evidence of Disease on scans) since April 2021 on Verzenio and anastrozole. New treatments keep coming along.
You'll feel better to have a plan and get settled in on treatment. Better, again, when you get confirmation that the treatment is working.
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@chicagoan I am now live in north central Florida. I won't be here long though…it's miserable here without family. We're most likely going to TN after school lets out so I can go to Vanderbilt Ingram Cancer Center. I am not happy with my current care. This is only because we have family there and my husband doesn't want to back to IL where we also have family.
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@creena-I can't blame your husband with IL's crazy taxes. I've heard that Tennessee is really nice and I would imagine the Vanderbilt center is very good.
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seeq that’s great NED since April 2021! So happy for you. I went to see the oncologist today it was my first visit. I have to have a bone biopsy on the 24 th . He wants to make sure that it’s cancer and to make sure it’s the same as the lump in my breast. I don’t see him again until February 3rd and he said that’s when I will go on the estrogen blocker and another medication. He asked me if I wanted to know statistically how long I had but I declined. I did ask him about his other stage 4 patients. He said most were between 5 and 10 years. I just can’t wait to get started. He also said I will not have chemo, radiation or surgery. He said he doesn’t feel like it would be a benefit to me. I’m nervous. I hope I do well on these medications. Thanks for responding and listening.
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I was first diagnosed in 2009 at age 48 with stage 1, IDC. Fifteen years later, in June of 2024, I was diagnosed stage IV with mets to one spot in sternum and some possible lymph nodes in anterior mediastinum (only sternum was biopsied). So I am going strong at stage IV for 7 months. However, according to one of my doctors, the mets were probably there for at least 2 years prior to diagnosis. So glad to hear that many of you are going strong for so many years. I hope to be in your camp, too!
Best,
Pam
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@livinglifenow im glad your doing good at 7 months. I’m just starting out with this. I have to have a biopsy of one of the bone Mets that I have and then I should be starting hormone blockers and another medication after I see the oncologist on February 3rd. This group is so uplifting and brings great hope to me. I hope I can eventually be where others are at and feeling good and living life to the fullest.
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A while ago, I did a count of members posting on this site who were living past five years and it was an astonishing number, about 125, with many past 10 years. Of course, there have been many precious lives lost, and serious struggle and grief here, but there is much hope too. People are beating the odds, even when they were diagnosed before the revolutionary new meds came.
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I plan on living for a minimum of 10 years with this. I have three boys - the youngest being 9 and I am NOT going to let them grow up without me! Though I had my setbacks with the Keytruda (thyroid/tachycardia and Addison's disease), I am an onward and upward kind of girl so let's do this! 💪
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@tougholdcrow wow 125 that’s great. Yes I agree sadly there are precious lives lost . I’m thankful for newer medicine that’s come out to treat all of us and hope we have many many years .
@creena I plan on it too! You’ve got this!
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I’m starting year 2. Recent scans NED on upper spine and neck. Breast tumor was 10 cm almost complete resolution now. No progressions. Skin invasion significantly improved, nodules all gone. Whew… on Carbo / taxotere for now as maintenance.
Agree with others the first year is the hardest, getting the mind around uncertainty and change. But deciding that living with joy matters and turning from helplessness to hopeful and purposeful makes for happiness, at least that has been my journey through. Realistic and positive. And that takes ,commitment, practicing coping skills and finding support. I highly recommend posting, and finding amongst the many threads the ones that give solace and a smile. So uplifting ! And the Monday zoom meetup for MBC too. Hugs all around to all. Rhonda5 -
Hi @rlschaller I’m so glad you are NED and doing well. This thread has been a lifeline for me. I don’t feel so alone. I appreciate every post.
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@ssales13 thank you. Im so glad you do not feel so alone now, the BCO has been a life line for me too. So much love and support is here for everyone , soak it in and share it back. Good stuff. Virtual hugs is a good meditation !
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Yes, @ssales13, know that you are not alone. We each have a road to travel, but we travel in camaraderie, and that is an enormous comfort.
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@malleemiss251 Absolutely!
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@ssales13 Until I started treatment, my head was all over the place. Very difficult time. Now that I'm on treatment (HP protocol every 3 weeks) and doing well, I have the time to get back to my life. I was in a play last month at our local community theater, I've joined a group of women who get together every Tuesday, I'm planning to direct a play next season. Basically, once you have a treatment plan, grab life by the horns and enjoy the ride. Keep us posted on your diagnosis and treatment. We are all here to support each other! 😀
Pam
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@ssales13 , I’ve been stage 4 for two years. The first few months I was a ball of anxiety and sadness. Now I’m on good meds and am living my life. I try to get exercise and travel. Since diagnosis I’ve been all over the world, most recently to Botswana. I really have minimal symptoms from the cancer, just side effects from the treatments. But I keep on keeping on. And I recommend the virtual meetups! Such good support!
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@livinglifenow thank you. That’s great advice. I’m so glad you are doing well and living life. I can’t wait to get to that point. I’m so glad that I have you all to talk to. I appreciate it so much.
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@AJ You are an inspiration to us all!!
Pam
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The reality hits me at times, mostly around scan time. Tomorrow I have a brain MRI.
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@AJ Sending hugs your way!
Pam 🤗
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@malleemiss251 ❤️❤️❤️
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