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De Novo Stage IV

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  • kbl
    kbl Member Posts: 2,637

    Snow-drop, I’m so sorry that happened. That sounds horrible. I will definitely listen and take it in the middle of a meal. What great advice. I know it’s supposed to be the highest fat meal of the day too, which is usually dinner for me. I may ask for Zofran as well. I do have an anti nausea but not Zofran. I really appreciate it.

  • harrow
    harrow Member Posts: 38

    @jobbibo thanks for the info on the trial. I am going to look into it further and keep that name handy, just in case. Please let us know what they say about the trial.

    @seeq I’m sorry to hear you had such a toxic workplace due to the one coworker. That can be so hard. I hope you continue to enjoy retirement life!

    @denny123 I don’t know if what the MO said is true re: subtype changes. At least I think that’s what I heard? It’s a bit of a blur now. I didn’t have my husband with me at that appointment, so I could be confused. I tried to Google it, but couldn’t really find anything other than info that says it can change.

    That’s too bad your MO is retiring! They sound wonderful. But what great news that it sounds like they’ve trained another one just like them! That will be reassuring.

    @snow-drop how are you doing? Have you had your liver biopsy yet? I hope everything went ok for you. I’m sorry to hear about your experience on Elacestrant. That sounds terrible!

    I hope everyone else is doing ok!

    I have a question for you ladies. I’ve been feeling less emotional this week, which is a bit different for me as I seem to be most sad about everything the week following treatment. This week, I have times throughout the day where I don’t think about having Stage IV cancer and it feels almost wrong for my thoughts not to be consumed by anger/sadness/grief all the time. I mean, I don’t want my thoughts to be consumed but at the same time, do I not understand the gravity of my diagnosis? Am I not taking this seriously? Am I being naive about my future? How can I not be upset when I have been given a limit on my life and time with my kids? I apologize if I am not articulating this properly. I’m feeling torn and confused between my emotions right now and I can’t reconcile them. Does anyone else ever feel this way?

  • bsandra
    bsandra Member Posts: 981
    edited October 2023

    Dear harrow, I have been following your road and thoughts here and I think you are in a right mindset for healing. When my wife got diagnosed 6 years ago at age 33, she also felt the way you do, which at that time surprised and even shocked me - I thought "how come she does not understand how serious situation is?". But time went by, I got smarter:)P and understood: this is the way we naturally (evolution!) react in the face of adversity - our brain and body concentrates on the most important thing, and for you now it is to save yourself. I'd compare it to announcement on the plane, when they tell you what to do if cabin-pressure is lost: "First put on your mask, and only then try to help your children or people sitting near by you". This is exactly what your brain and body does - turns on all the protective mechanisms it has.

    Don't think you have limited time - you get amazing treatments that most often work (just look at Cleopatra overall response rate!), and then when they work, you ave good chances to reach NED, and then… nobody knows. I am pretty confident we'll be seeing you here after many many years, or even, likely, not see you like some of the ladies that I know - they just don't come here anymore because they live their lives NED and happy, 10, 15, 20 years and more after devastating stage IV diagnosis…

    With no pressure I am attaching you this link - read it carefully, and you might get a lot of positives from it, positives that even scientists are a bit careful to admit:)

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6519755/

    Hugs,

    Saulius

  • illimae
    illimae Member Posts: 5,517

    Harrow, you do not appear to be someone who is in denial or doesn’t understand the gravity of your diagnosis, we can usually tell which posters are struggling with that. For me, I moved from shock and anger to acceptance fairly quickly, what did it for me was starting treatment, which gave me a plan, determination and something I could control and this community. I found others living for several years, became aware of medical advances and realized this wasn’t necessarily the death sentence I thought it was. I rarely think about it now, my life isn’t over, it’s just different.

    BTW, today is MBC awareness day. I take a moment to think of those that cancer has taken from us, then celebrate living with it (usually with a cocktail 😁)

  • jobbibo
    jobbibo Member Posts: 64

    Harrow, I do understand this quite a bit. When I was first diagnosed I was truly devastated. I couldn't go more than maybe an hour without having a breakdown, I could barely look at my husband without thinking about all he’ll have to deal with, I couldn’t respond to any of my loved ones reaching out. Over the first couple months I noticed I was having a lot of days where I was feeling alright and the dark thoughts weren’t constantly consuming me. Even now I still think about it every day for the most part but I don’t completely break down when I do. This is my goal, to not let it consume me and learn to live a good life despite my diagnosis. Therapy has been helping me a bit to feel this way too.

    I do still have some bad days of course though. For instance my wedding anniversary hit me really really hard. I wasn’t expecting it because I had been feeling pretty good leading up to that day but the milestones do hurt me thinking about how many more will I have type thing. So I’ve learned this is still understandably a complete rollercoaster of emotions but that it is possible to have good days and that I want as many good days as possible. I don’t look at it as not understanding the gravity of the situation but more like adapting to the situation. I’ve started telling myself that I’m not going through all this treatment to prolong my life just to be miserable every day. I hope as more time goes by I think of it even less and less so I can just live my life. Sending my love ♥️

  • bighubs
    bighubs Member Posts: 20

    Harrow, I am mostly echoing the sentiments of others who have responded to you, but this is completely natural. When my wife was diagnosed early this spring with de novo stage IV I was a complete and utter wreck. I honestly think she handled the news better than I did somehow, unless she was just suffering in silence. I thought I was losing my mind. Couldn't eat, couldn't sleep, couldn't look at my children without seeing the future pain and grief in store for us all. Made contact with others similarly situated and couldn't fathom how they were living normal lives; it seemed so far out of reach for me. Impossibly out of reach if I'm being honest. But then we got a treatment plan, began treatment, started seeing positive results pretty quickly, and began to realize that while this disease might well kill her, it won't be today, tomorrow, next week, or likely next month or next year.

    I think it is a divine mercy that we can adapt to these situations and "move on" in our minds. Can you imagine if it were otherwise? Living with the raw emotions you experienced at diagnosis for the rest of your life, however long that turns out to be, would be a horrible fate. Not that you should completely forget the gravity of what you are facing nor your odds. Those facts should influence the way you live and the choices you make each day, but they should not dominate your every waking moment.

    Don't feel guilty about your feelings. They are what they are. Be grateful that you are starting to see some light and to come out of the hole we have all been in.

    Wishing you the best!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,642
    edited October 2023

    harrow,

    The initial period after a stage IV dx creates emotional upheaval in different ways for different folks. Time is the greatest balm and, eventually, cliche as it sounds, you will find a new normal. Counseling and medication can also help with the emotional upheaval a stage IV dx creates.

    I am not the type of person who sugar coats or gives false hope. In my 12 years with MBC , I have seen lives extended far beyond initial expectations with medication that weren’t yet approved when I was dx’ed. There is hope but I think tempering it with reality is needed as individuals have no way of knowing how much or little mileage they’ll get out of potential treatments. I am at the 12 year mark but I am very much an outlier. Yes, a small subset of people survive for a decade or more but that is not typical and there is no reasonable explanation of why or how this happens. Despite that, I have hope for future improvements in longevity (Dare I hope for a cure?) based on the advances I’ve seen since my own dx.
    Yes, this is very rough on our families and each member deals with it in their own way. Kindness, compassion, and honesty, as well as time, ease things but none of us caused our bc so don’t forget to aim that kindness, compassion, and honesty toward yourself! Take care.

  • olma61
    olma61 Member Posts: 1,016

    Saulius, thanks for the link to the paper for us HER2+ MBC people. Very an informative and encouraging as usual.

    Harrow, when I was first told I had breast cancer, not even knowing it was metastatic yet, I felt like an anvil had been dropped on me. But soon enough I realized I just had to put one foot in front of the other and get through the treatment. I was pretty torn up the day of my bone biopsy which confirmed the Stage 4 diagnosis but after that, it was just focusing on showing up and getting treatment, which I always approached with the attitude that things were going to get better. Maybe some would say that’s unrealistic but that’s how I approached it and since my breast lump was very palpable, I could see and feel the progress with each week of chemo. Which definitely gave me more ability to feel optimistic.

    It might be cliche, but taking it one day at a time and not projecting into the future works for me.

  • denny123
    denny123 Member Posts: 1,435

    Harrow-I agree with everyone. When I was first dx'd. I was told that my left side was Stage 1 and my right was DCIS. Then after my dmx, I was told that both sides were Stage 2 and I did have a spot on my liver that 3 biopsies missed. So I was actually Stage 4 from dx. In 2004 my liver was filled with tumors and statistically, I only had about a year to live. That was the hardest few initial months ever…until my first CT scan 2 months after I started on the "new" Gemzar & Herceptin clinical trial, and it showed shrinkage.

    So through the subsequent years, I just have to think back to how worried I was about my longevity, or lack thereof in 2004. And now that I have a likely tumor in my lung, the feelings arise again. But with all of the available treatments, I just put it into my mind that maybe I can get rid of that nasty spot quickly.

    22 years is a longggg time to worry about my cancer, but it is what it is. And I know that I have been very blessed to still be here.

    In reference to what you mentioned above…it is very possible for my blood to be Her2- and my new possible tumor to be Her2+. That is why I am getting the Guardant and Invitae tests, as well as a lung biopsy.

    Hang in there and I think that you are doing great!

    Denise

  • harrow
    harrow Member Posts: 38
    edited October 2023

    Thank you everyone for your lovely and supportive messages! They really made me feel heard and understood.

    @bsandra thank you for your hopeful words and reminding me to try look at things more positively. I do try but I’m naturally a “prepare for worst case scenario” person which doesn’t bode well for me right now. Your wife’s story gives me hope. And you’re right. I have no way of knowing what my future holds or how I will respond. Thank you for including the link as well!

    @illimae I hope to eventually be more like you in your approach to your diagnosis and your new, different life. Right now, I honestly can’t fathom a day where I don’t think about it. How freeing that must be! I do need to work on remembering how not in my control most of this is, which is hard to accept. Thank you for the mention of MBC Awareness Day. I didn’t know that was today. I will join you in taking a moment to remember those lost to cancer and those who have helped get us to where we are today with more hope than ever before.

    @jobbibo it’s like your entire first paragraph was plucked right from my head. I have so many of those thoughts every day about my husband and kids. Your statement about “going through all this treatment to prolong your life just to be miserable every day” really spoke to me. I don’t want to be that person either. I also liked what you said about adapting. That’s a good way to describe it. I’m sorry that your wedding anniversary hit you so hard unexpectedly. I would feel the same.

    @bighubs thank you for your message. I relate to every word you wrote, particularly how unfathomable it is that others are living normal lives and how awful it would be to live each day with those raw emotions. I do wonder how people get there, living normal lives. But it does happen, and has happened to me. I remember thinking that same thing when a loved one died unexpectedly a few years ago. Here I was, my life completely changed forever and those around me were just carrying on as if nothing had happened. That was really hard for me but I did get there as well. Not that I have forgotten my loved one, but life does go on. It has to. I will keep reminding myself that it won't be today, tomorrow, next week, or likely next month or next year!

    @exbrnxgrl I appreciate your approach of having hope but tempering it with reality. I think that’s exactly what I need to do but just find a better balance of hope vs reality. I’m a bit too heavy in reality (or worst case reality) sometimes. I started therapy but have only seen her once so far. Here, I can’t do private counselling and the free service provided by the cancer clinic at the same time so I have to choose what is the better fit. There is a waitlist to get the free service and I’m not booked in until early November. I’m also not opposed to medication. I just don’t know anything about what options there might be for that. Thank you for the advice of turning kindness and compassion onto myself. I definitely struggle with that.

    @olma61 you have given some great advice too, thank you. I struggle with not projecting into the future. I’ve always been a worrier. A “what if”-er. Your comment about putting one foot in front of the other reminded me of something I saved off social media. It was a quote from a book the speaker liked about overthinkers. A boy and his horse were in the woods. The boy said, “I can’t see a way through”. The horse says, “Can you see your next step?” The boy says “Yeah.” The horse says, “Then just take that.” It’s a good reminder not to think too far ahead. I will also take your advice to focus on and be positive about my lump getting smaller. Progress!

    @denny123 I am hopeful my first scan will bring the same optimism yours brought you. As you mentioned, your journey has not been without its worries and 22 years is a very (wonderful!!) long time. I appreciate how you are able to focus on the positive and try not to let the worry overcome you by leaning on your experience with successful treatments.

    I just want to say again how much I appreciate the time each of you take to respond to my posts. It has really made a difference for me. With each response, I continue to learn how to navigate my new reality. Thank you!

  • weninwi
    weninwi Member Posts: 745
    edited October 2023

    harrow,

    You write well, with clarity….you may want to consider adding journaling to your tool kit. I found considerable benefit from counseling; was fortunate to find a good fit and now "check-in" once every 2-3 months via a video visit. I chose not to start an anti-depressant, in spite of pressure from my family, and happy I made that decision. Have used a low dose anti-anxiety med once in a rare while. I find a commitment to a daily walk outside, time spent out in nature, exposure to sunshine, exercise, and just keeping-on with daily good habits (regular meals, sleep, routine tasks of daily living) helps me maintain physical and mental equilibrium. And, if you have a faith tradition that would be place to turn.

  • harrow
    harrow Member Posts: 38

    Hi @weninwi thank you, that’s nice of you to say about my writing. I have thought about journaling, but haven’t actually done anything yet. You’ve mentioned some really good suggestions - thanks for those. I do need to be better from an exercise/walking perspective.

    I hope everyone is doing well.

  • kbl
    kbl Member Posts: 2,637

    Hi, everyone. I’ve been out of pocket for a few days. Went to visit my grandson. It was much needed.

    Snow-drop, I’m starting Orserdu today during lunch. Wish me luck. I’ll keep you posted.

  • denny123
    denny123 Member Posts: 1,435

    kbl-good luck! I had to research that one. If it turns out that my possible lung tumor is a met, I am wondering what I will be on next.

  • kbl
    kbl Member Posts: 2,637

    Thank you, Denny123.

  • olma61
    olma61 Member Posts: 1,016

    KBL hope you do well on Oserdu without too many SEs

  • kbl
    kbl Member Posts: 2,637

    Thank you, Olma61. Day two in the bag and still feeling okay. 🤞

  • snow-drop
    snow-drop Member Posts: 517

    KBL, best of luck to you. taking it with lunch is a good move, as you are alert in case any side effects come up. I eat sweet potato puree or have a banana/ apple with a teaspoon of peanut butter as dessert, helping me with nausea. I am developing a sweet tooth so not like me!!! your MO might order lipid panel test from the second month of your treatment.

    I had a liver biopsy last week and still waiting for the results, no surprises thankfully. the process was uneventful but they used strong pain medication (fentanyl) which made me concerned considering huge disagreement on using it, it left me dizzy and weak for whole week. honestly I thought that fentanyl had been discontinued.

    wishing everyone better days ahead.

  • denny123
    denny123 Member Posts: 1,435

    snow-drop—I had 3 liver biopsies in 2004 without any pain meds and the third one was really bad since they went in from my left side and it was CT-guided. Be thankful for meds!

    Yay for me, I think. I saw a thoracic surgeon today and he wants to wait for another CT scan in December to make sure that my lung spot is still there. But my onc was worried since the spot is spiculated (new word for me). Apparently, the surgeon did talk to my onc about it. I will have to follow up with everything on Friday when I go in for my Herceptin.

  • kbl
    kbl Member Posts: 2,637

    Snow-drop, thank you, again, for the advice. I’m listening for sure.

    I'm sorry you felt weak and dizzy for so long. I myself like when they put me out for my endoscopies. I call it the best sleep I’ve ever had.

    Denny123, that sounds horrendous and cruel. I don’t know if I could handle that. I hope the CT in December comes out all good.

  • harrow
    harrow Member Posts: 38

    @kbl I’m glad you had a great visit with your grandson. There is nothing my mom loves more than spending time with her grandkids! I hope things continue to go ok for you on Oserdu.

    @snow-drop I’m sorry the meds from the biopsy made you not feel great, but I’m happy to hear it was uneventful. Hopefully you get the results soon and it’s good news! I didn’t even know fentanyl was used in that way. I’ve only heard about it as a street drug.

    @denny123 I’m with kbl, that biopsy does sound awful. I hope you get more clarity from your MO when you see them on Friday. I hadn’t heard of spiculated either - I googled it just now. Sending positive thoughts for good CT results in December!

  • denny123
    denny123 Member Posts: 1,435

    kbl and Harrow….thanks! All of the best to you!

  • kbl
    kbl Member Posts: 2,637

    Thank you, Harrow and Denny123.

  • seeq
    seeq Member Posts: 1,060

    Snowdrop- I just had my second liver biopsy today. I also had fentanyl (and Versed) and I am wiped out today, but not dizzy. We're taking a mini vacation next Wednesday, so I hope I'm 100% by then. Due to the tumor location, they had to go through the pleura, which they told me in advance because of additional risk. I was surprised, though, that my bandage is on my breast. My initial tumors were larger and must have been easy to get to.

    Denny- the approach from the left sounds awful

  • kbl
    kbl Member Posts: 2,637

    Seeq, enjoy your vacation. I hope the biopsy comes back negative for you. I know you’ve been doing well on the meds you’re on.

  • kbl
    kbl Member Posts: 2,637

    Snow-drop, do you remember how many days after you started taking Orserdu that the nausea started? I ate breakfast today and have now had to take an anti nausea pill because I felt very nauseous. I am taking the pill at lunch, and today will be day 4. I’m also feeling a little dizzy.

  • seeq
    seeq Member Posts: 1,060

    KBL - hmm..I never considered that the biopsy could come back negative. Well, wouldn't that be something! I don't think I'll hold out hope, realistically - but rather adjust to the idea of next steps. That's not pessimistic, it's it?

  • kbl
    kbl Member Posts: 2,637

    SeeQ, when I was going through the whole we think you have multiple myeloma thing and had a bone marrow biopsy, they picked a piece, and it came back negative. It’s actually all through my bone marrow. Granted, I did have cancer, but the biopsy came back negative. Could it be possible that what they see could be something benign? I’ve never had a liver biopsy, so forgive my ignorance.

  • seeq
    seeq Member Posts: 1,060

    KBL, it's possible, and I have a known hepatic hemangioma, which is benign. This area showed subtly on two PET-CTs and on an MRI "without full characterization". It was a CT guided biopsy and a good-sized target (4.7 cm), so unlikely to miss the mark. The thought process is that since I had extensive mets in my liver, this is probably a recurrence, but I'd love a benign surprise.

    We all deal with different stuff, so there's no way you would be familiar with it. I think the imaging problems you deal with are incredibly frustrating, so you have a completely different tactics for "tracking" your disease.

  • denny123
    denny123 Member Posts: 1,435

    All 3 of my liver biopsies missed the tumor, so it was considered to be just a lesion. It wasn't.

    I think that might be reason why my thoracic surgeon doesn't want to do a lung biopsy yet….just in case it is just an infection.

    I have been on Herceptin for about 19 years and now it is causing weirdness. I have to take Allegra before my appointment, and a Tylenol during the infusion. I also have to have a Pepcid IV. And since I get bad chills during the infusion, I eat hot cup-a-soup or ramen noodles and have warm blankets on me. I arrived home at 4, was in bed at 6, woke at 8 with a fever and my BP was 73/46. My BP is slowly rising, TG. I never had any problems until a year ago.

    I am also on Xeloda.