De Novo Stage IV

1535456585992

Comments

  • kbl
    kbl Member Posts: 2,980

    mexhay2, welcome to the group, although I’m really sorry you have to be here. That’s amazing what you’ve just accomplished. Congratulations. I’m so glad treatment is giving you the opportunity to feel well and keep living as full a life as you can. I don’t think there’s any issue using your first name. I go on my Zoom calls on Mondays, and some of the ladies have their full name. I know on the forum here, the mods like some anonymity, so they themselves will hide people’s full names.

    DivineMrsM, thank you for sharing. I was hoping to be able to write in some sort of guest book how much she was loved here, but I don’t think there is one.

    My first name is Kris.

  • amontro
    amontro Member Posts: 185

    Thank you for posting that impressive obituary. What a loss!

    This makes the third person I've known who passed in one month to mbc. The other two were not connected to our group.

    It seems to happen so fast:. Being told that they are receiving different treatments and managing; then slipping away before we know it. I'm having trouble wrapping my head around it.

    My thoughts go out to all of you. Take care.

  • elderberry
    elderberry Member Posts: 1,068

    We seem to be losing so many so much faster. PraisieSea lived a wonderful, full and remarkable life. Those her knew her personally were fortunate.

    mexhay: Hello and welcome. It is up to you about your name. Some on these sites know my real name. I prefer to use a "nom de avatar" It is great that you got to go on a major hike and felt well enough to do it!!

    amontro: I keep going back and re-reading your profile. Losing a part of your jaw!!! Did they do any reconstruction?

  • kbl
    kbl Member Posts: 2,980

    Bumping this thread. We’ve now lost ShetlandPony and BevJen.

    I want to keep this thread going, so here I am.

    I had a CT, which I don’t really rely on, but things look okay. My tumor markers are still high but stable, at the lowest they’ve been in years. I’m so grateful to Xeloda andFaslodex for giving me more time. Other than fatigue and a few hand and foot issues, I am doing well. I’m having to take naps daily now, even if I sleep well the night before.

    I hope you’re all doing well.

  • candy-678
    candy-678 Member Posts: 4,175

    I follow this Thread.

    I go for my next scans on Aug 15th. Praying for stable again. Will be a year on Lynparza Sept 1. I hope I can be on it for a while longer. "The devil we know".... know what I mean? I have been doing Stage 4 for 5 years now. Hearing of our sisters we are losing makes me think "when will that be me".

  • kbl
    kbl Member Posts: 2,980

    Candy, I also think about when my time will come. It’s something that’s always there, but I push it down so I can enjoy life.

    I’m so glad you’re doing okay on Lynparza, and I will be in your pocket for your scans. You are always there with the list of who’s getting scans and treatment, and I know how much we all appreciate that.

    August 13 will be nine years since they thought I had multiple myeloma and figured out so many years later it was breast cancer. I feel so fortunate to still be going and feeling okay. I have my moments, and sadness washes over me at times, which seems to come out of the blue, but then it disappears usually pretty quickly. I think it has to do with treatment. It almost feels like a hot flash would but on an emotional level.

    Please keep us posted on results when you get them.


  • elderberry
    elderberry Member Posts: 1,068

    candy: Best wishes for your next scan. If we can't have NEAD let us all be stable. candy - thank you again for remembering an endless lists of all our scans .

    kbl: tic-toc. I am usually pretty okay - most of the time - Then suddenly I have a "Holy Shit - I have a terminal disease moment and I am awash in anxiety. Chill, Elderberry - right now you are doing okay and until that changes - get on with living your best.

    Hugs to all

  • ninetwelve
    ninetwelve Member Posts: 328

    These losses were hard. They all are.

    I'm coming up on eight years of MBC. This year I have started to have short-lived but severe anxiety as I think about what it means to die. Then I tell myself everyone is going to die and we don't have a choice in the matter. Had a lot of diagnostic imaging last month and this month I will get palliative radiation. After that some form of chemo, although I tell myself that if I can't face chemo afterward, there is still assisted dying (legal in my state). I'm watching interviews with dying patients because it helps with the feeling of alone-ness in having a terminal illness. Was on a Zoom call with old friends (they do it weekly; I drop in when I'm up to it.) They ask how I'm doing but someone always cuts me off before I can get the first sentence completed (on several different calls). Last time after I barely got out that I'm going to do rads for 3 weeks, my old friend of 25 years changed the subject quickly. The four of us talked for two hours, so time was not the issue.

    Later they all separately messaged me to say, 'Let's talk, okay?' (THAT'S WHAT I WAS TRYING TO DO!)

    I consider asking them to hold still for AN ENTIRE MINUTE while I talk about what's going on. I'm so tired of listening to their cancer scares when they won't even let me talk about my actual cancer. What will they do when I'm gone? Shake their heads and wonder why I never told them that I wasn't well.

    Sorry about ranting. Should have taken it to the Steam Room.

  • divinemrsm
    divinemrsm Member Posts: 6,614

    Ninetwelve, I hope all goes well with the radiation. I get the part about watching the videos of dying patients; I read memoirs of people with terminal illness probably for the same reasons.

    Please don't apologize for venting about your friends. I'm glad you chose to tell us here. Steam Room is wonderful and I have used it many times, but I feel stage iv members understand best what you're going through in this case.

    In developing better personal boundaries the last couple of years (I can't believe how much I used to put up with from people I love), I am learning to speak up. I am learning that keeping quiet means I'm not presenting my true self to others. It takes effort to speak up but it is worth it to find my own voice. I'm learning to show up for myself.

    Maybe the four way zoom call is not serving you well any more. Maybe you're better off having one on one conversations with these friends so you have room to talk about what matters to you. Those are things you'll need to answer for yourself. I have two older sisters who freeze me out of conversations and think nothing about it. Tho I will go to a large family gathering, I've stopped getting together with just the two of them. I will no longer allow myself to be treated like that. This is after a lifetime of being treated that way.

    Another thing I've learned is other people don't change, so it's up to me to do the changing if I want to have better relationships. If you want to keep up with the zoom calls and don't want to come away with hard feelings, you'll need to ask your friends for a minute or two of uninterrupted time to talk about serious matters that are important to you. Tell them it may not be the most pleasant of topics, but its real life and say that since you all are so close, you know they will understand. Tell them you're not looking for them fix things, you'd simply like them to listen. You want to be seen and heard. That is how you show up for yourself. You are worth it. (For me, it takes continual practice but I am making progress.) And look, even tho it is not your intention, you will be teaching them a lesson on being a better friend.



  • kbl
    kbl Member Posts: 2,980

    I’m so glad I bumped this thread. I’ve missed you all here.

    Elderberry, I think that’s what I’ve been feeling as well. I’m fine one minute, and then I have emotional moments all in the mix. It sucks.

    Ninetwelve, I hope the radiation goes well and then chemo. I’m sorry you can’t feel heard on your Zoom call. If they don’t want to hear what you have to say, why do people ask?

    I’m trying to go to sleep tonight, but my brain is starting to think. I hate when I can’t turn it off at night. I won’t bore anyone with the details, but, man, I hate it. I know I’m not alone. Insomnia at night and exhaustion during the day. If only we could flip a switch and turn those two around.


  • cyathea
    cyathea Member Posts: 340

    kbl, thanks for bumping this thread. I’m not logging in as often now, but I still pop in to see how others are doing. Losing Shetland Pony and BevJen is sad. I found their posts to be very helpful.

    My latest scan showed no change in my bone met in my spine despite an increase in pain. Due to the pain, my MO requested and MRI instead of the usual bone scan and CT. I was in the MRI for almost two hours so either they had a slow machine or they were just being extra careful. I’m generally a cool cucumber for my scans, but this last one rattled me for some reason. I was so relieved to get good results! Candy, I hope you get good results next week as well.

    I don’t think people who aren’t Stage IV know what it is like to live with cancer. I try to focus on the living rather than the dying part, but the web algorithms seem to know me best, and they never fail to feed me an article on the latest famous person to die from cancer. That can’t be good, right? 🙄

  • seeq
    seeq Member Posts: 1,172

    KBL - I'm so glad you bumped this thread (and I was glad to see you in the Zoom call today). I've been a little worried about you. It has been hard losing ShetlandPony and BevJen. Their posts made us feel connected and I learned from them. <---That's not really sufficient, but I'm having trouble finding the right words.

    Candy - I can't believe it's been almost a year that you moved to Lynparza. OTOH, I wrote the date on a check today and thought, "OMG, where has this year gone?!" It's good to know the Lynparza is still working for you. I'll be thinking of you for scans.

    Ninetwelve - I'm sorry your friends are being so clueless. Knowing me, I'd get a little snarky, eventually.

    DivineMrsM - your suggestions are so much better. :)

    Ccyathea - 2 hours! I'm usually pretty calm during scans, too, but that's a really long time. I'm so glad you got good results.

    ::waving to Elderberry::

  • sondraf
    sondraf Member Posts: 1,690

    Candy, you and I can be scan buddies this month as I think mine is on the 27th.

    I also don't know where this year has gone - I mentioned somewhere else about having checked my PMs and seeing that I had exchanged with both Pony and Bev this time last year. Or even that its been almost a year since they found the local progression that threw me into a treatment spiral and next month I talk to plastics about my nipple tattoo. Itll be almost a year soon since Philly left us, or that its been 8 months since Rabbit passed.Time marches on whether we are there or not and Im not sure if I found comfort or concern in that thought overall!

    My days are pretty busy right now with a lot going on at work and doing new things, but sometimes I look up and think man, its Thursday again? When did that happen? And I know that statistically as the time passes my turn to move to the head of the bench is coming. Most times I can keep focus on the every day, but when we lose a close member thats when it comes back all over again.

  • kbl
    kbl Member Posts: 2,980

    Thank you, SeeQ. I’m sorry time ran out and I didn’t get to say hi to everyone. I wasn’t on last week because I was visiting with a friend. I may try to go Wednesday.

    I’m glad I’m not alone in thinking how fast time is flying by.

    Cyathea, so glad your bone met is stable, but I get two hours in the MRI machine is not good. I’m sorry you had to endure that.

    Sondra, it’s comforting to know I’m not alone in my thoughts of the days going so fast. Sometimes being busy helps push the thoughts back.

    We are at our other home right now on ten acres. My husband is showing me how to mow the lawn. It’s a nice riding mower, so when I did a portion the other day, it didn’t cause me any extra pain. It takes my mind off my worries for a little while, but it’s so hot, I have to do it early.

  • candy-678
    candy-678 Member Posts: 4,175

    NineTwelve- Sorry to chime in late, but maybe you should tell your Zoom group you want JUST A MINUTE when it gets your time to share. That, like Devine said, it is not pleasant, but real life, and that you do not want a fix, but just for them to listen for a minute. You deserve that from the group. They need to listen to you, even if it is not pleasant chatter. Life is not all rainbows and sunlight.

    I have a friend that is always trying to make our situations equal. I am tired, he is tired. I have pain, he has pain. Yes, I am sure he gets tired and his back hurts, he is my age (52) and has worked hard his whole life. But his tired and pains are from working a full day, not from doing nothing, and also suffering the side effects of cancer treatment. Sometimes I get fed up with his dramatics and I point it out to him. He will back off with his rhetoric for a bit, but then he starts it again. And my sister will not discuss the cancer. She grows quiet when I try to talk about the subject-- my next scans, my side effects, etc. I have learned I cannot call her if I am worried or need to vent. I am finding us Stage 4ers are the only ones who truly understands.

    cyathea- I hope you get good news from your MRI. Maybe something non-cancer that they can fix.

    Sondra- The Lynparza scan buddies. I liked your "head of the bench" analogy. I am not a sports-minded person (that was a sports analogy, right?), but your comment was like "yep so true".

  • LI77
    LI77 Member Posts: 68

    I'm here too, reading everyone's posts. Sometimes, because I'm so new to all of this (but six months have passed by so quickly!), I feel like I don't really have any good advice or anything helpful to add.

    I feel you on the time thing. Most of the time, I'm fine, and then I'll have a "holy shit, I have stage IV cancer" moment/internal panic. I'm guessing that will never go away.

    I'm getting my last Lupron shot this Friday; I'm scheduled to have surgery (oophorectomy) on August 15. That will be day one of my Ibrance cycle, so I'm waiting to hear back from my MO about whether she wants me to delay the cycle and for how long. That makes me a bit nervous; I trust my MO, but at the same time, it makes me wonder if delaying Ibrance will "wake" my cancer and cause it to be active again? Ugh.


  • sondraf
    sondraf Member Posts: 1,690

    li77 - its a really fine balance for sure. For my ooph they scheduled me on my week off and I had an extra week delay. For the primary removal well, that didn't work out so well and I did have progression after being off Ibrance for 4 weeks, though it had already shown to be starting to fail since the primary had grown (at some point between June and September). Im still happy with both decisions to have the surgeries as I knew the risk involved but the benefit was high. I did stay on letrozole through both surgeries, though, will your MO allow you to stay on tamoxifen?

  • LI77
    LI77 Member Posts: 68

    Sondraf, I’m on letrozole and ibrance. I was on tamoxifen before I was in chemically induced menopause. I’ll keep taking the letrozole. Hopefully it’ll just be a few days of delay on the ibrance.

  • snow-drop
    snow-drop Member Posts: 563

    KBL thanks for keeping this thread active, I like everything related to gardening even mowing but heat no! I am glad you are doing well. Midday Power nap is highly recommended by scientists for everyone. In Europe some big corporations provide map time for employees (my information is before pandemic though!)

    losing Bev and Pony saddened me, they both helped me by sharing recent research and knowledge. Bev hadn’t recovered well after her massive surgery and long time recovery process that made her out of treatment for several long months. And Pony, refused further treatment after abdominal surgery, she wanted to stay in full with her children and family. They both made positive impact on this board. RIP.

    Have you heard from Tinkerbell? Last thing I remember she had a surgery, I hope she recovered well and will check in soon.

    Hello to everyone, it is nice to read your posts here.

    My last scan was stable but showed 2 new suspicious nodules in my lung which made me sad and disappointed. My MO seems like doesn’t take any action yet until they get bigger? she is simply careless and I have to cope with her, as she is the only option I have in this nci clinic.

    I have not been myself lately. for about few months I am like lost or don’t know what to do. It is strange, some days I am totally in fatigue mood 0 energy to move but some days doing ok, considering.

  • illimae
    illimae Member Posts: 5,739

    Snowdrop, yay for stable 🙂 I’m sorry about the lung nodules. My MO would probably send me for an ultrasound but wouldn’t take action yet either to avoid over treatment. That’s fine with me, I prefer biopsy confirmation if possible but I understand your disappointment and hesitation to wait. I wish you well.

  • amontro
    amontro Member Posts: 185

    I'm in there with you guys. I'm not going to mention all of you by name because we all know who we are.

    In a movie last week, as an aside, someone said "She died from her cancer. Nobody beats stage 4." This knocked me for a loop. you'd think I'd be used to it by now, but saying it out loud when you least expect it unnerved me.

    Last night I had a nightmare that I was in a home (not mine) being flooded and it upset me. This has nothing to do with my prognosis, but I had that awful feeling.

    I recently ended a weekly zoom att least until Sept. Although most of the ladies know my situation and are sympathetic, they just don't "get it". I just couldn't sit through another "Why don't you try this?"

    It bothers some other stage 4s that I've made it this long, but that means I've had a longer time to feel the anxiety and think it could be any day.

    All of you are always in my heart and prayers. I feel so close.

  • kbl
    kbl Member Posts: 2,980

    li77, I’ll be thinking about you on the 15th. I hope you’re not off treatment too long, but over the two years I was on Ibrance, I had to have four or five breaks, and everything stayed stable. I hope it does the same for you.

    Snow-drop, good to see you here. I looked at Tinkerbell’s profile, and she hasn’t logged in since February. I hope she’s okay.

    Amontro, I’m sorry that happened. I’m wondering if you’ve been watching the news and seeing the flooding in Kentucky. Maybe that had something to do with your nightmare. Hugs to you, and I always feel your support.

    Hi, Mae. Missed you yesterday on our Zoom. Hope all is well.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,291

    amontro,

    I hear you. My feelings mirror yours as an outlier.

  • illimae
    illimae Member Posts: 5,739

    KBL, yup, all good. This Monday was a treatment day and my window is 10-2 due to the long drive to El Paso. I think all missed zooms have been due to travel.

    Amontro, I’m sorry too, it can really suck sometimes.

  • kbl
    kbl Member Posts: 2,980

    Mae, how long did you say it takes you to get to treatment? I’m glad you’re doing well.

  • divinemrsm
    divinemrsm Member Posts: 6,614

    Amontro, imo, the “nobody beats stage iv” is said in a movie for dramatic effect. It’s an abrupt sentence that takes into account no variation of anyone’s experience living with a stage iv cancer diagnosis. I can understand how it can be upsetting, but consider the source, which is a bunch of writers in a room doing their best to drum up a story that captures the emotions of viewers.

    As another aside, I watched America’s Got Talent last week and an engineer doing stand up comedy was talking about how 44% of marriages end in divorce. Then he said, “if you think about it, that means 56% of marriages end in death! There’s no good outcome in marriage!” Well, I hope that comes across as funny as it was on tv. Because no one gets out of here alive, married or not. Mbc or not. I hope that does not sound unsympathetic. But if someone can say no one beats stage iv, an argument could be made that no one beats life, either.

    Water in dreams represent emotions, and it sounds like lately you’ve been feeling more anxiety, so your dream was a reflection of that. I have flooding dreams from time to time, too.

    As also an outlier, I definitely think my experience living with mbc has transitioned to something different that what those more newly diagnosed with mbc are going through. An outlier has different challenges. Never will I ever care if it bothers someone that I’ve had good response to some of the treatments. I’m not going to make myself small because some people are bothered by it.



  • illimae
    illimae Member Posts: 5,739

    KBL, just over 3 hours each way, ugh. Then we usually spend another hour getting misc stuff we need from the “big city".

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,291

    “As also an outlier, I definitely think my experience living with mbc has transitioned to something different that what those more newly diagnosed with mbc are going through. An outlier has different challenges. Never will I ever care if it bothers someone that I've had good response to some of the treatments. I'm not going to make myself small because some people are bothered by it.“ - divine Mrs.

    I am going to read this at least once a day! Unfortunately, I still do care, on an emotional level, and yet I know that I have no more control over the course of my bc than those who are struggling.

  • kbl
    kbl Member Posts: 2,980

    Mae, whew! Sorry you have to go so far. I know you don’t mind it because you love your new place

  • snow-drop
    snow-drop Member Posts: 563

    Mae, I always like your positive attitude, thanks for your post, I’ll push my nurse for US, having heavy chest for awhile. From exchanging posts with KBL I understood you moved to your cabin (I’ve been away from the board so I might miss it). I am sure you enjoy beautiful scenery every day and beautiful sky/stars.

    KBL, thanks, I am happy to see your posts as well. I am glad that our group keeps being active, thanks to you!
    amontro, it is a reason why I watch “happy ending” movies only!!!! Last night I had a dream marrying to my college crush 🤫 well, nobody knows why I put on a smile today!!!!
    Exbrngxgrl, I like that outlier feelinmirror!