How long have you been Stage IV?
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Stage IV since Feb 2024, liver mets, but given the extent of liver damage most likely the mets were there for at least a year.
Brief history of cancer 😉:
- June 2011, ILC, stage 2. Mastectomy, intraoperative radiation, tamoxifen and then Femara / letrozole
- Feb 2019, progression to axil lymph nodes. Surgery, chemo, radiation, Aromasin / exemestane
- Feb 2024 - extensive liver mets, Faslodex /Fulvestrant and Verzenio; good response but due to liver toxicity switched to Kisqali.
The last scan showed stable disease; the next round is coming up in February, so we shall see.
I decidedly turned away from the stats. I am well aware about seriousness of my situation, and I do have bad days… but I have good days too and I do my utmost best to enjoy every good one I have. 😁
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Never really noticed this thread before. I've been stage 4 since January of 2023. Things have been stable, and I've been considered "bone only" but now they are watching my liver for some previously unconcerning liver lesions that they now think are slightly larger, and might be a problem/metastases.
AJ - Wishing you all the luck in the world with your MRI today!
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May 2024 TNBC axilary, breast & clavicle/superclaviar. Largest one at sub 12.9
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Hi @lacombattante Im sorry your going through this too but glad your stable and hope you stay that way. I have somewhat good days and bad days as well. Hoping and praying we have many many years left to enjoy life and family.
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Hi @threetree I’m glad you’re stable and hope those liver lesions are nothing. Im going for a bone biopsy of one of my lesions on the 24th. I’m nervous. I’m hoping when I start treatment that I respond well to the medication. Hugs to you.
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@lynntnbc4 I hope you are doing well on your treatment.
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ssales - Thanks very much for your comments. I had a bone biopsy (T2 vertebrae) to confirm my stage 4, and I was extremely anxious and freaky about having to get it. I wound up with a wonderful nurse and equally wonderful interventional radiologist who performed the surgery. They used "conscious sedation", and it really wasn't as bad as I was anticipating. I went home, not long after they were done and I don't remember needing any pain meds. Wishing you lots and lots of luck.
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@threetree oh thank you so much for putting my mind at ease ! I appreciate it so much ! I’m so thankful to have you wonderful ladies to talk to.
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@threetree I was given fentanyl for the bone biopsy and thought, yeesh, I can see why people get addicted to this. Anyway, that procedure was pretty easy, except the drilling into the bone feels quite weird. Fortunately, it doesn't take too long.
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@tougholdcrow thank you . Good to know it was pretty easy. Not wild about the drilling part but hopefully it’s fast and I don’t feel any pain.
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@ssales13 I too found the bone biopsy to be a pretty easy procedure.
I was diagnosed de novo er/pr+, her2- with bone Mets in Oct 2021. The beginning was terrible, but things will even out as you start treatment. This past year alone I traveled to Maine, Las Vegas, New York City, Nova Scotia, Florida and the US Virgin Islands, and in October I ran my first marathon. Your life is not over, not by a long shot!
Maureen
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Tougholdcrow and all - They gave me some sort of drug cocktail and I don't know if fentanyl was part of it or not. I did express my total mess of fear and anxiety to them and the doctor and nurse talked to each other then about just what to put in the cocktail, and whatever it was, it did the job. I don't recall a drilling per se. What I remember was being in the CT machine and feeling people reaching and grabbing all over my back. It actually seemed to me almost "illicit" like they were trying to grope me or something, but I knew that was the drugs, and nothing bad was really going on. I told the nurse back in the recovery room how it was so strange and how I'd felt like I was on another planet or something and that it was a "group sex" sort of party or something, with these people seemingly wanting to get "too personal" with me, and how at the same time I knew that was not true and that it was just the drugs. I was just floating around mentally, but then felt all their hands moving over my body in the machine, but no real pain; just weirdness. I also remember I had to keep my arms and hands out straight in front of me while lying on my stomach and that's not easy for me, and it still wasn't with the drug cocktail. I wasn't sure I could "last" in that position, but I made it.
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My bone biopsy was so long ago that I barely remember but the best drug ? Versed! It doesn’t knock you out, it simply makes you not care and, even better, not really remember. Want to cut off my head, doctor? Sure , no problem 😉. The amnesiac properties of this drug are amazing.
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I think Versed was part of my cocktail, but I can't remember the other ones. I remember them discussing adding one more than they usually use, due to my exceptional? fear and anxiety. If they used Versed maybe that's why I don't remember any actual drilling. I just remember feeling that they were fiddling around with my upper spine (T2 area). Interesting info Exbrnxgrl, also hope you are feeling better!
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threetree,
What you describe sounds exactly like the Versed effect! It is the best 😉
I think I passed part of my kidney stone last night. I have to pee over a little strainer and collect anything that passes and I got a tiny hard pebble last night, but the fun is still not over… sigh. I wouldn’t wish this on my worst enemy.
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@threetree wow sounds like you had some good drugs during your biopsy!
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@exbrnxgrl im sorry you are dealing with kidney stones. I hope you feel better soon!
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Thank you! It’s been a bit surreal as I was fairly clueless about them. The suddenness and severity of the onset of pain was incredible. The fact that , with the medication I’m on, it can take up to two weeks to pass is crazy! My pain is fairly minimal now but severe pain can return without warning 🤦🏻♀️. Opiates make me sick to my stomach so I am taking high dose Ibuprofen.
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@exbrnxgrl wow 2 weeks is crazy! I’m glad the pain is manageable and hope it stays that way.
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Hi ladies just got back from my mo visit and finally got my plan in place. I have to have a bone biopsy next Friday but I will be taking Anastrozole and Kisqali and a bone strengthener denosumab once a month. Hope you all are doing well.
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@ssales13 So glad you got in to see your MO and are starting on a treatment plan. Wishing you smooth sailing. Keep us posted on your biopsy and how you are feeling.
Hugs, 🤗Pam
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@livinglifenow thank you! I appreciate it. I will. Hugs to you too.
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@ssales13 Just checking in to see how you are doing. Have you started anastrozole yet? I am on that cute little pill as well. I'm curious if you've noticed any side effects. Of course, it sounds like you are on other things as well. Difficult to distinguish which is causing which side effects.
Have a great day!
Hugs,
Pam
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@livinglifenow thanks for checking on me! Yes I started on Thursday 1/16. Thankfully I haven’t noticed any SE’s . I’m getting a bone biopsy this coming Friday so I haven’t started the kiqali and the bone strengthening shot yet. How are you doing with the anastrozole?
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@ssales13 Glad to hear you are started on some treatment. It certainly gave me a sense of relief. As far as anastrozole goes, I started it back in July 2024 (the day after my first HP infusion) and was on it for 9 weeks. I started taking it in the mornings but thought I had some side effects. Aching, etc. So, I switched to evenings. That seemed to help. I then took a three month "treatment holiday" after being NED in September. I just started back on anastrozole (late December) and HP (early January 2025). I am experimenting again with taking it morning vs. evening. I feel a bit more achy this time, but perhaps I've got a touch of something going around. So hard to know. Wish you the best with anastrozole and your biopsy. I had a bone biopsy in July 2024 and had no real issues with the procedure. I didn't even take any pain meds afterwards. Hope your experience is similar.
I haven't had a Zometa injection yet. Only one small bone met! But, I know that the anastrozole can cause bone loss, so Zometa is in my future! Have a great week and let us know how your biopsy goes.
Hugs,
Pam
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@livinglifenow I’m feeling the aches now and seem to be a little more tired and I do take the anastrozole at night. IM glad your biopsy went great and also that you only have 1 bone met. I was told I have 5 bone Mets. 3 in my spine, 1 in my sternum and 1 in left rib. I hope my biopsy goes well like yours. I’ll let you know how it went. Thanks for checking in with me. It’s nice to know I’m not alone.
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Hi all, first time posting. I was diagnosed de nova 1/13/25 stage 4 BC with mets in lung, bones (mult!) & lymph nodes (HR+, HER2-). 64 years young! Thought I had bronchitis around Thanksgiving, then they thought pneumonia, got a chest X-ray early Dec and it all went south from there.
Surreal to say the least!!! Especially since I feel nothing from the multiple bones mets and no palpable breast or node lump can be found. Jan, 2024 mammo was clean and well as year before. ??????
Connected with great Breast Onc at Sloan K immediately (my family/friends army worked for me!) and started on Letrozole last week, bone strengthening shot already received and awaiting Ibrance in mail this week. Needed a drain inserted in chest cavity to drain pleural effusion last week - insertion was bad experience but can breath well again. Also, not draining as much fluid as expected - good omen I hope,No chemo, surg or radiation to start - can’t believe and nervous but we’ll see at my next pet scan in April. Getting spinal mri next week and expecting a bone biopsy shortly after. After all my reading, I’m preparing myself for more invasive treatment in case these drugs are not effective.
it’s so inspiring that you all have years - I am working on processing my diagnosis and having treatment for the rest of my life but I now have hopes that my life will be much longer then anticipated when first learning about my illness. I try not to research too much ( it’s my nature and innate curiosity) to keep me from spiraling.Any advice, thoughts or inspirations would be welcome. So happy for the good news on this chat and pray it extends to everyone!
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