De Novo Stage IV
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Many years ago there was a doctor in San Francisco who danced around the OR with nurses and techs prior to her bmx. Quite a few on bco we’re shocked and one even mentioned that her her sister cried hysterically before her own bmx and that was the proper way to react. I clearly recall laughing and joking in the pre-op area with my plastic surgeon and a resident. I had complete faith in my surgical team and I sure as heck wasn’t sad over losing a cancerous breast so laughing was therapeutic and more relaxing for me. I guess I have never reacted “properly” according to some. I just reacted in the way that is best for me and that should be neither insulting nor upsetting to anyone else!
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exbrnxgirl, I have not lost my breasts, so I cannot comment on the feeling of losing them, but we all deal differently with this shit diagnosis. I love the way you’ve dealt with it. I am sort of middle of the road. Some days I think, WTF. Other days I think how thankful and grateful I am I’ve had a great life with my husband, daughter, and now my grandson.
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exbrnxgirl- I'm still early in my cancer story (?), 18 mos and counting on first line treatment. I also have not had a huge emotional reaction - not anger or sadness. I kept thinking it would catch up with me and overwhelm me at some point - and I guess it still may, but there's no sign of it yet.
The way I'm looking at it is that I can only control what I do. I can't control how well or how long the meds work, only that I take them as I should. I can't control how my body betrays me with this cancer crap or how soon it it will figure out a way past the drugs. I can't control the SEs, I can just do the best I can with them. I can only do what I'm supposed to do, enjoy my life as much as I can, and hope for the best. I don't allow myself to dwell on low thoughts, because it doesn't do me, or anybody around me, any good. But that is my nature and it doesn't work that way for everyone.
It's unfair to say I shouldn't feel this way, or shouldn't tell anyone else I feel this way - just as it would be unfair for me to tell someone else to deny their feelings and keep them in check. We don't all have to react the same way to be here for each other. That's what makes BCO such a great place. I've learned if I don't understand someone's perspective that I can ask them about it - and I've learned more by doing so.
I still spend a lot of time thinking about cancer - it invades most of my idle moments, and I wish I could change that. I'm not sure it's possible. Maybe as more time passes...
Mae - I've seen the sh!t you have to put up with - you are an amazingly strong woman.
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SeeQ, lol, thanks! I have a pretty high tolerance for sh!t 😆
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hi all. I think how i deal with it changes as to what is going on in treatment. I still feel like a beginner here. The beginning was shocking. Then once I started the ibrance/letrozole/xgeva, I fell into a manageable groove. Still sort of busy busy but extra tired, but dealable. Surgery brought back all the emotions. Now I am fearing the unknown, as we figure out what is next.
Exbrnxgrl, I also laugh inappropriately sometimes, apparently. Stress makes us all react differently. Funny, I also don't react to many medications "appropriately " 🤣. (If its an uncommon or rare reaction, here i am.)
Yeah Illimae, you are good with dealing!!! 💪💪
I just had my first fever as a cancer patient. On a weekend during a nor'easter🙄. Called my NP sister to describe my painful symptoms. She said sounds like UTI or possibly yeast infection because i had so much antibiotics with my drains. (Never been diagnosed with either before) Called my PCP's service and he got back to me immediately! He called in prescriptions for both conditions and told me to send DH out for them. Poor guy only picked up the first one ready and I had to send him walking out in this weather again, a total of about 1.25 miles with sideways snow. 2 meds, Tylenol and 4 hours later I am feeling 1/2 human again, and temp is down to 99. But I cried when DH commented on how much medicine I have been taking lately. Pre-cancer I took an advil a few times a year.
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SeeQ, my thinking is along the lines of yours. I handle most days pretty well. The few times I lose it I blame on the medicine a crying jag comes out of the blue. What happens is I start to get overwhelmed for one reason or another, and my brain doesn't feel like it can process it like I used to. It only lasts a few seconds until the feelings die down. That's happened twice since I started Xeloda.
I am a little grumpy this morning. For some odd reason, the power is out in my neighborhood and has been since 3:30. It's 37 out in Florida. Lol. My bed is toasty. I'm grumpy because I haven't had my coffee. I'm too lazy to go out and get some. It's supposed to be back on around 11.
DanceMom, so sorry you had a fever. What a great DH to get your meds. I'm glad they feel like they’re working.
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Thank you all for your support! I never laugh inappropriately at others, never. However I frequently laugh about myself and my own plight in life. Humor is a great stress reliever for me and despite mbc, I haven’t found any reason to be somber about life.
Many of you know that I have struggled a bit with my unusual stage IV trip because there has been occasional push back by some who think I’m not stage IV enough. I never intend to hurt or insult others but I can’t change the course of my disease (I have done nothing unusual). Except for the nightmare of a complete pneumothorax, my physical struggles have been minor compared to many. I also won’t change the way I deal with mbc, emotionally, simply because others think I should be more upset or somber. When I write, I write about my own experiences and feelings. Others feel differently and that’s just fine!
I hope we can all realize that mbc is experienced differently by each of us and that we can support each other regardless. Those of us who are doing well, even if we haven’t suffered enough in the eyes of some, have feelings as legit as those who are struggling. I will never forget the cruelty of a fellow stage IV member who pm’ed me about how happy she would be when I had progression. I hope that was simply the opinion of a single individual and we don’t start playing the “who has suffered most” game here. Stage IV stinks for all of us.
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exbrnxgirl, I am shocked at how cruel that was to send you a PM like that. I have had times I feel quite normal and times where I feel like dog crap. I appreciate the time I have felt on the normal side. I would never wish someone was suffering with this disease and am so glad you haven’t suffered more than you have. I shake my head thinking what is wrong with people. We are here to cheer each other on, lift each other up, and hold each other in comfort when we’re suffering more. We do each have our own way in dealing. I am so appreciative of you and everyone here. Hugs to you. I also think your positiveness gives hope to others.
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KBL, I really appreciate your message. BCO has been a wonderful place for me from the start. Every now and then someone becomes unhappy/upset/insulted because of my relaxed attitude or lack of stage IV suffering but I neither chose how my mbc would go nor do I have any influence over my lack of progression. I hope those folks will bear in mind that whatever I write pertains to me only and leave it at that. I rarely give advice, except for the cannabis thread, and hope that everyone knows that all stage IV members need support, even those of us who are doing well!
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exbrnxgirl, I couldn’t agree more. And the info you give on the cannabis thread is much appreciated.
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This diagnosis has so many variables. We can hope and work for the best case, and be comforted that there is time, just some more than others. We dont know. This thread really shows how crazy different this umbrella term of stage iv BC actually is. I feel like I dont know where I belong on it.
Exbrnxgrl to be clear, I didn't mean to insuate that anyone is laughing at people! I just have that nervous laughter in uncomfortable situations that sometimes makes it worse.
I love reading everybody's stories and experiences. Each one has some important nugget of info, support, heart...
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Exbrnxgrl, I echo what KBL says. It is a shitshow for all of us knowing it can go south at any moment. It’s indeed a lonely place whether we are doing well or not. I’ve got the damn cancer in all the vitals, yet am so thankful to feel “ok” right now. Not like my former self but in some ways better- no worrying about stupid things, cut way back on drinking, and eating better.
Itwas good for me when diagnosed de novo to see that people could live fairly normal, sometimes good, and sometimes for longer.
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Olma -
Thanks for the anemia link. I will find out this Thursday if taking iron for one week has helped.
I just don't like adding new symptoms to my already symptom-filled life.
This is why I need all of you.
- Anna
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Amontro, I’ve had anemia since the start. Thankfully, it’s stayed pretty stable, no blood transfusions needed. My number usually stays in the 9s or low 10s. Mine is not due to iron. I assume it’s because the lesions have taken over my bone marrow. I hope the iron worked for you
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Hi ladies! Gone for a weekend and miss out on all the excitement.
I can related to everyone here and often times find myself reading and nodding my head in agreement. Its almost like at times some of you are in my very own head and thoughts, and I feel as though what Im reading I could have written myself.
I can be ok and not ok all in the same 10 min stretch. I think my outlook, for myself is very much related to situational times and where I am in my journey. Im also "new" to this diagnosis and for me, I don't know if I think that matters much, because I just am who I am, so 5 years down the road if Im lucky or tomorrow, chances are, I may deal with something just the same. Im happy there are those who don't stress, worry, cry, and feel all of that angst. I have a very dry sense of humor and I have that to help me deal with things. My sister in law couldn't take it and some of the things I would say would make her cry because they were so sad..but likely reality. But its MY way of dealing with this shit sandwich.
Dancemom, I related to what you said very much. Initially it was shocking and overwhelming and I thought about dying all the time, it was awful, Then you get on your meds and protocol and if you are lucky like I was, feel pretty good and normal and happy to be "doing" something about this damn cancer growing inside your body. Then you deviate from that routine for whatever reason..a pet result, talk of "agressive" treatment and what that looks like, radiation, chemo, surgery..and my groove and faith is shaken some.
I think however we feel, we all have a story to tell and everyone's story is valuable. I take away pieces from what all of you post on here..personally I feel peaceful knowing that there is always going to be a place for me to go to share, relate, vent, cry, etc where someone on the other end of this post is going to actually get what Im talking about or how Im feeling..no matter where we are on our individual journey's. Good days, bad days, whatever days. Its supporting and being there that makes me feel good.
I was a lurker long before I came to this thread as I mentioned when I first posted here. As Kikomoon said, this diagnosis is a lonely place. I like to come here and feel less lonely for a few minutes and I hope everyone else feels the same way.
Anyway-My MRI is this Sunday not Super Bowl Sunday. SB seems so late to me this year.
Dancemom, I hope you are feeling on the up and up by today and your fever has been resolved!
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Eastcoast -
Take your "dry" sense of humor to my thread on "Stage 4 Gallows Humor".
Those of us on there feel that we can get away with using humor to soften our circumstances, especially when it's been more than a few years for us.
Sometimes, we're irreverent, so reader beware!
Please join us on these threads. If you are able to, join the Zoom on Mondays and/or Wednesdays.
Look to hearing from you again,
- Anna
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thanks for the good wishes east coast. Antibiotics are awesome. I am just heading back from my first "fill". Seeing radiologist tomorrow to figure out plan. Not sure how to get there though...Been in transit for almost an hour and a half to go straight across town because streets all closed for the officer who was killed last week. I knew the funeral is tomorrow and expected craziness then, but I'm shocked the viewing is at St Pat's and the police are shutting down midtown for 2 whole days. Not a good look while tensions are so high.
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illimae and KBL -
I've been thinking about you guys. Not only do I have night sweats, but during the day it's on and off. I have a small fan on the floor where I lie to sit and read, etc. I start getting hot and I turn it on. Then I am cold and I turn it off. I still haven't tried popsicles.
KBL -
I saw my oncologist yesterday and I told her that the "non-constipating" iron pills I was taking made me severely constipated. She is going to have me infused with iron as soon as my insurance approves. She and the nurses swear up and down that this does not cause constipation. We'll see about that.
Dancemom - You keep going, girl!
- Anna
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Anna, it’s been almost ten years for me, since I had my partial hysterectomy in 2012. I totally get the up-and-down hot to cold. It’s constant. One minute I have a jacket on, the next I’m ripping it off. I woke up at 5 this morning drenched. That doesn’t happen all the time, but it definitely happens when I’m sleeping and wakes me up.
How can they say iron doesn’t constipate? Our systems are so inundated with medication, who knows what it does to it.
I’m sorry you’re having a rough go of it right now. Hugs
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The hot flashes at night are the worst. Any other time you can just deal with it, but I'd love to get a good, uninterrupted night of sleep.
I took SlowFE, years ago, and it didn't cause the constipation the regular iron pills caused. But, we have more going on, and we're older now, so...
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KBL and SeeQ -
I have inherited chronic constipation from my mother and her father. I have been seeing a gastro for many years. He last prescribed me Linzess in a high dosage. It helps most of the time, but a few Miralax doses and high potency stool softeners are my friends.
My onc's office left a message last night that my iron infusion has been approved by my insurance company.
As I mentioned, my onc sand several onc nurses said the iron infusion will not constipate. They were all standing there around the oncologist. Their faces told me that they are not sure and i trust my instincts.
Anyway, I'll make the appointment and maybe I'll have some good news in this regard.
- Anna
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I’m so glad they approved it, Anna.
Every scan I have says I’m constipated. I totally get it. I get constipation very easily. Strange. I’m having a good week. I got on a kick of Cheerios. I’m wondering if that’s helping. I’ll see next week. Sometimes I go better when I’m on my Xeloda. Then when I’m on my off week, it’s a struggle.
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Thanks for the invite amontro, I'll think about heading over to your thread one of these days. I could use some humor of any kind always and especially the last few days.
My hot/cold flashes are also throughout the day and not relegated to nighttime. Sometimes they are horrible, and the ones that wake me up at night when I'm drenched in sweat but still cold at the same time are the worst. I have no more internal temperature. Im either freezing or Im overheating and there is no in the middle. I was also prone to constipation before this mess started and now it's worse. All fun times, but this is what it is.
I had a shoulder MRI on Sunday, another back MRI on Monday and today had radiation simulation on my back. Insurance issues apparently prevented me from being able to have both MRI's at the same place on the same day at the same time. Both with contrast, so after labs on Thursday, I had the Sunday MRI give me the contrast in my hand so I still had an arm left on Monday. At my radiation simulation appointment the nurse told me I was having radiation on my shoulder, which must mean the RO thinks the question marks in my shoulder are disease or at least strongly suspects. Although I am not surprised and won't be if it is, I seem to find out major news this way, either on my own or by accident. I hope to hear from him by the end of the week w/ results of that MRI. Xgeva shot tomorrow. Fun filled days.
Hope everyone else is doing ok and hanging in there.
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EastCoasttoWestCoast, you described my hot flashes to a tee. Sometimes I have to get up and change at night. It’s so awful. One minute I’m wearing a sweater, the next I’m ripping it off.
I hope for good MRI results for you. Please keep us posted.
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I had no idea. I was scheduled for Rotator Cuff Surgery in October2021. I had the shingles shot in June and the second one in August then the Flu shot end of Sept before surgery. I had a pain going down my right arm and a lump, I went to the dr. He said it was a fatty cyst. I assumed the discomfort was from my shoulder so I proceeded with surgery. When I was able to take a relaxing bath again in December I did a self exam and found a small lump in my right breast under the breast to the right of the nipple. Couldn't get in to get the mammos until January 7th. The rest is history. My life changed in a very small window of time. Like everyone on here I'm just trying to process this. I was always so proactive in my heath care and I'm just scratching my head how did this get to Stage IV Mets. I too find myself with a moment of normalcy then I'm back to what's going to happen to me. I pray I have excellent results on the meds but I have that cautious optimism. I love connecting with others I feel not so isolated and grateful to have found this site
Not sure why my diagnosis did not show up. I filled out all the info??
invasive lobular metastatic stage IV grade 2. Mets to pelvic area and ribs (FOCI) Have a 1mm lump on right breast with 4 lymph nodes on same side. Small 3mm spot on lung undetermined and just popped up in October.
started Ibrance and Letrozole.0 -
DDIL, can you possibly fill in the info about yourself, your diagnosis and treatment? It really helps others with certain suggestions or to help answer qbased on what they see in your bio.
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DDIL, cautious optimism is good, many of us feel that way balancing hope and medical advances with the gravity and daily reality of our situation. Us De Novo’s have a different sense of shock at diagnosis, I think, with no time to get used to the idea of having cancer, just shoved in the deep end. But here we are, making the best of it.
Sorry you’re here but glad you found us.
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Dear DDIL, we all know (although I myself am just a husband of a stage IV de novo patient) what a shock this is. In these forums there are so many wonderful and knowledgeable people, and if you have questions - just ask, and they will be answered. Saulius
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" I was always so proactive in my heath care and I'm just scratching my head how did this get to Stage IV Mets."
DDIL - This. Exactly. I'm so glad you found us, and so sorry that you find yourself in this position.
Saulius - "Just a husband"? Really. We know better than that. You are such a strong advocate for your wife and a great supporter and encourager of all of us on the boards. Husband, yes. "Just?" No.
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Dear SeeQ, thank you so much for your kind words. I simply love this beautiful and courageous community. With our strength and science we will eventually win, I am sure. "One day or day one - we decide!" Saulius
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