How long have you been Stage IV?
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Since December 2020. On Ibrance, Fulvestant and Zometa.
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I have been on Capecitabine now for 8 months. Do have some bothersome side effects some days but have had a good response (reduction) in my liver lesion, so am trying to stay the course. Worse thing is loss of appetite and weight loss.
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3 yrs, 11 mos. De novo liver mets. Still on 1st line of treatment.
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Coming up 9 months - I was dxed de novo with "innumerable" bone mets 14 August 2023. I am just about to begin cycle 8 of Letrozole/Ribociclib.
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8 years Dx mbc but now sure probably right out the gate in 2004 so possibly 20 years.
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I'm officially in year 3, but I think I had been metastatic for at least a year or two before it was found….probably more. Still on first-line treatment.
I have severe scoliosis and have struggled on and off since high school with back pain from it. I was diagnosed early stage in 2006 at age 29 and it had been 15 years. I was at low risk for recurrence after it being so long ago and the fact that I was 1mm shy of being Stage 1 with no node involvement. It looked to be a perfectly contained little marble back then. I'm 47 now. I was 44 when it came back.
I needed to get a nerve ablation for the pain from scoliosis and my orthopedist needed an MRI to verify the nerve he needed to hit. Lo and behold, he not only found the problem disk, but he also found innumerable mets to my lumbar spine. Ha! Poor guy. He was white as a ghost and bumbled in the door. I knew it was bad immediately. In fact, I knew it was cancer as soon as he looked at me. I had seen that look before on a radiologist 15 years earlier.
Anyway, my first official CT has so far been my worst. Abraxane really kicked in after about 3 months and everything just kind of went dormant. I had a little "rough patch" on my right pleural lining that was barely visible, but turns out it was the reason for what I thought was my asthma flare-up. It was actually a little bit of a pleural effusion from it and it was indeed a little cluster of MBC cells.
I feel great, honestly, all things considered. I felt better almost immediately after my first chemo cycle. Two cycles later, I had virtually no back pain. I feel fortunate. I think I'll make it to 5 years. The Onc doesn't like to make predictions on shelf-life, but he is optimistic I'll be around for a while yet.
When/if the Phesgo and Ibrance kind of maintenance regimen fails, Enhertu is my next stop. It's been on my radar since my initial diagnosis. I was entered into one of the DESTINY trials, trialing it as a first-line treatment for MBC vs chemo, but sadly, I was rejected. My IHC wasn't high enough for the trial, even though my FSH was. Then, they tried to enroll me in a DESTINY trial, trialing the same Enhertu vs Chemo as first-line, but for HER2Low, but my FSH was too high to be considered low for the trial purposes!! Hahah! Trials are so picky.
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@more_cowbell, we're sorry that you find yourself here after all these years, but we're glad you've reached out to our community for support. Besides these wonderful discussion forums, we wanted to recommend also our Virtual Community Meetups, where you can connect with others and chat in real-time. You can find more information about it here: Virtual Community Meetups. It would be great to see you there as well! Let us know if there is anything we can assist you with. We're here for you!
Sincerely,
The Mods
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Thanks @moderators! I appreciate it. Figured I might as well join since I've creeped around for so long. :-)
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@more_cowbell , I highly recommend the zoom meetings. I mostly attend the Wednesday meeting and have gotten a lot of support and good suggestions!
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Stage 4 DeNovo - 16 years. - mets to lung and spine.
Herceptin and Arimidex from Day 1.
Currently, every three weeks, herceptin and arimidex
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3 years, I have been working part-time and have mostly been fine except for the side effects from the treatment which are manageable.
The pain in my hip has become consistent in the last few months. The scans show everything is stable so not sure what is going on.
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Originally diagnosed 2A when I was 37. Diagnosed Stage IV at age 42. Mets to spine. I’ve been Stage IV for 8 years and counting.
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extensive bone mets, ER+/PR-/Her2-, for 9 years now
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In one month, I hit year 13! I’ll quote The Grateful Dead, ‘What a long strange trip it’s been…”
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You all give me hope! Thank you for sharing!
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Hi I see no one has posted since June 2024. I’m newly diagnosed as de novo stage 4. I go to my first appointment to see oncologist tomorrow at Mercy Hospital in Baltimore. Hoping everyone is just out living life and doing good. I’ve read everyone’s post on here and it gives me hope.
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I should also add that I have bone Mets as well. I believe 5 of them
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@ssales13 Sorry to have to welcome you to this club, but the people are very nice and knowledgeable here. You and I have similar cases (de novo, bone mets), and I'm going strong after 16 months. I feel normal on most days and go about my usual activities. I wish you strength and hope despite the shock.
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tougholdcrow , thank you for responding.Im glad your doing well at 16 months in! Im having a rough time trying to adjust. I just found out about the bone Mets on News years eve. I’m pretty nervous about the appt I have tomorrow and wondering what kind of treatment I will be doing. Are you currently NEAD? I’m hoping we all have many,many years of living !
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Yes, ssales13, I am NEAD on Kisqali and letrozole, which are relatively easy drugs to take. There are options, and new drugs coming quickly down the pipeline. So yes, may we live a long long time.
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@ssales13 Sorry to welcome you to our "club." But I am still going strong after 8+ years. I started with extensive bones mets-many more than 5 and fluid in the pleural space outside my lungs. I lead a fairly normal, active life. Just booked an international trip and am now off to play pickleball. Life can be good with Stage 4 but it is very tough in the beginning, getting used to treatments. Life is not the same but it still can be good. Best wishes. (I have never been NEAD-just "stable")
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Chicagoan , thank you for responding. 8+ years that’s awesome. I’m so happy that you’re doing well.Best wishes to you. Thank you again for the encouraging words. I appreciate it.
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tougholdcrow, I’m so happy that your doing well and NEAD. I hope to be there one day as well. Thank you! I’m so glad I found his group.
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4 years stable, I have recently retired mostly life is very normal
I have a few health issues which I thing might be related to having have borderline low neutrophiles.
A few big trips planned
I just keep going.
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@ssales13 Welcome to this forum that I discovered recently and which is very rich. Everyone is very friendly and shows great empathy.
My first diagnosis dates from 2016 (a very small stage 1 tumor). In January 2023 I passed stage 4 (to my great surprise!) with liver, lung and bone metastases. So yes, you have to get used to the treatment and agree to change it when it becomes necessary. I won't hide the fact that my life has changed, but once the treatment is well managed I have a great time, my life is normal and I also enjoy doing activities that I love like hiking and skiing. .
We are with you for your first consultation tomorrow.2 -
sunnidays 4 years stable that’s great to hear. I’m sorry you’re experiencing other health issues though.Thank you for responding. This really seems like an amazing group and I’m glad I found you all.
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soldanella im so glad that it’s well managed now for you. I hope and pray it stays that way for a long time. I can’t wait to get to that point. Everything is new and scary for me right now. I’m nervous about tomorrow. I originally went to John’s Hopkins hospital and the breast surgeon I seen twice was terrible. She just had nothing encouraging to say so I made an appointment at Mercy hospital in Baltimore. I’m hoping this oncologist is nice and has a more positive way about him. Well…as positive as he can with this. Thank you for responding.
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@ssales13, nice to meet you, but I am sorry about the circumstances. I am 17 months out from a de novo stage iv dx. I am enjoying life and am more active than I was before dx. The drugs have been kind to me. I am now back doing resistance training for bone protection. The gym is my "zen" place. My mets are all sclerotic bone lesions. They gave up trying to count how many I have. My best advice is to be kind to yourself. It can be overwhelming for a time and it can take a while to get your head around the dx. In your pocket with support for appointment.
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malleemiss251 nice to meet you too. I’m glad you’re doing well and that you have your Zen place! Yeah I’m trying to give myself some time. I really have a lot of anxiety and I think depression too. I’m having a hard time getting out of bed and I cry a lot. I know I have to pull myself together. Thank you for the advice and I appreciate you reaching out.
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