Triple Negative Bone Mets, and ???
Hello everyone,
I posted not long ago when it was discovered after 12 years of NED of have mets in the bones. I'm having a really hard time navigating this new forum, so I apologize in advance if I'm not posting in the right place. Never had issues "before." I'm sure I'll figure it out eventually lol.
So of course I don't have the two forms of chemo i received today (once I retrieve those I'll update), but after having numerous tests, scans, and blood work taken, the oncologist it still waiting on the results of one particular marker that must come back negative as well to get me approved on Keytruda. Wondering if any of you all have had that included in your regime and how it's been going. Also, wondering how long some of you have be diagnosed with the triple— . Is triple — a good or BAD scenario? Sheesh, crazy when ANY form of cancer is considered "good" or "bad"—but you all know what I mean.
Also, wondering if they ever biopsy other areas based on pain? They only biopsied the sacrum, did a full body bone scan, MRI of lower quadrant, CT of whole body but that was over a month and a half ago, and I'm having tugging and pulling in my lymph node areas under both arms. Would there be any benefit knowing if cancer was there too, and how they treat those area as well as organs differently than bone breast cancer??
I'm pretty lost still. For some reason, things registered better with my initial dx and I hadn't found this group until AFTER surgery and mid chemo if I recall. This seems so much more complex.
Thanks for listening everyone. I'll sit down soon to try to get a better handle on this new format!
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Hi pupfoster, I know it's so much to absorb so it's not just you! We received a devastating diagnosis then are faced with tons of new info and decisions.
So basically when they determine it has metastasized and confirm it by biopsy it is treated systemically. If it has spread to a couple of places the whole system is treated as one. Your treatment is meant to go out and attack cancer anywhere in your body. So they don't need to biopsy every location they should have an idea of where your mets are off your scans. Stage IV is typically scanned every three months to eval response to chemo. If all is stable on your scan you stay on same plan if there is much progression then discussions are necessary to go to the next drug line.
I was dx in 2016 stage 1, 2020 stage 3c, 2022 stage 4, I am on Keytruda and Xeloda , so far so good holding things stable. You will benefit from Keytruda if you are PD_L1 positive so that's probably what your waiting on. Yea really is there a good cancer lol but are there better scenarios in responses with types..yes. MTNBC has come a long way with adding drugs to the arsenol to give us a better OS rate. Unfortunately no longer curable just treatable. I try to hang on the hope of new drugs that may be waiting in the wings to help extend my life. It's almost a year now that I am Stage IV and it's still hard to accept! I really rely on my faith and taking it one day and one scan at a time. Of course this site is pheromonal, nothing like being surrounded with wonderful people going through the same thing. Lets be truthful nobody can possibly begin to understand what this feel like except us.
Well I hope I helped explain, always here for you❌⭕️
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Hi Cookie, and thanks for your response. I appreciate you sharing your experiences with me. And apparently even though I was quite active in the Stage III forum, none of my previous stats and posts are showing now. They were just not long ago as I posted as soon as I found out about my new diagnosis, and I can't find any of that stuff now. As I said, I'll figure that stuff out….
Chemo yesterday was Gemzar and Paraplatin. Plus steroids and anti nausea meds. Had some mild nausea overnight, but took some Ondansetron and it seemed to help. Was flushed on my face as well as the top part of my chest which was also a tad itchy which went away as the day went on. You are also correct about the reading for the Keytruda. It's the PD_L1 status and it should be a higher, not lower score. Haven't heard about that yet, but hopefully before next tx….
I've got a great group rallying around me to help, so I definitely feel blessed for that part.
I'm sorry you're traveling this journey as well. I almost had a feeling it would come back at some point. I was so far out though and you kind of let your guard down you know? I was very suspicious by the traveling pain stuff, but chalked some of it up to age (now 61) and possibly arthritis. Wishful thinking.
You definitely helped me with your response and kind words. I'm here for you too, might not know as much, but for a lending ear to vent or cry to. XO
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