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De Novo Stage IV

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  • ninetwelve
    ninetwelve Member Posts: 328
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    Hello, fellow Denovas. Been a while since I checked in. Pain, numbness, tingling with my right arm and shoulder making it hard to type (I'm right handed). I see my MO tomorrow morning, and a new Primary Care doc in the afternoon. I'm going to ask to stop treatment and go into hospice. Had a bone scan last week, which could factor in to the decision, and labs could turn up something. I don't know what my MO will say, but I keep remembering the surgeon in Being Mortal (a documentary) confessing he wanted patients to have hope so he was sometimes unrealistically positive about the possible outcomes of a particular treatment, or offering treatments past the point of helpfulness. I don't want to be talked into something that would worsen my QOL It's already pretty low.

  • jobbibo
    jobbibo Member Posts: 85
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    @ninetwelve I’m so sorry you’ve been dealing with the pain and numbness and that your QOL has been low. Stopping treatment is a very personal decision only you can make and I have so much respect for you prioritizing your QOL. I hope you and your MO have a good discussion where you’re feeling confident with whatever next steps you decide. Sending love and hugs your way ♥️♥️

  • divinemrsm
    divinemrsm Member Posts: 6,160
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    ninetwelve, I’m so sorry you’ve reached a point where you are going to ask for hospice. As jobbibo said, it is a very personal decision. I think it is brave of you. You are in my thoughts.

  • denny123
    denny123 Member Posts: 1,487
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    @ninetwelve I am sorry that you have made this choice. Sending prayers!

  • kbl
    kbl Member Posts: 2,775
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    Hi, all. Sorry for not responding sooner. I have my grandson, and I’m go, go, go when he’s here.

    @snow-drop, I’m so sorry you’re having so much pain. I know we are not far off of each other in starting the Orserdu. Are you thinking it’s not working? I agree with the earlier scan.

    @ninetwelve I’m sorry you are at the point of wanting to ask for hospice, but I totally understand. What did your doctor say? I am thinking of you. I know when I feel I’m done with the side effects and just want to get off treatment, I will be doing the same thing.

    I’m a week into my second month on Orserdu, and I’m not feeling horrible. Doesn’t it make you wonder when drugs don’t make you feel horrible that they probably aren’t working? I’m not going to know until I get symptoms if it’s not working because scans don’t usually work for me.

    I did cough the other day and threw my lower back out right before I got my grandson. I’ve been walking bent at the hips a little bit, but I wasn’t going to have it affect our visit.

  • jodyj
    jodyj Member Posts: 55
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    @ninetwelve I totally get it. I have peritoneal carcinomatosis and am waiting for pathology results of a laparoscopic biopsy performed yesterday. I feel I should reread Being Mortal. It made a huge impression on me before my MBC diagnosis. One thing I've learned is the benefit of trusting my instincts, and also giving myself permission to change my mind. Wishing you the best with whatever you decide.

  • ninetwelve
    ninetwelve Member Posts: 328
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    Thank you all for the kind thoughts. Today I saw my medical oncologist, who refused to give me an approximate timeline, but who agreed that I would have less than six months without a working treatment, and sent in a referral to hospice. I spoke on the phone with EOLCOR (End of Life Choices Oregon) about getting the prescription for aid in dying, and I met my new primary care physician and gave him the first official oral request for the medication. And I talked to my brother and one close friend about going into hospice.

    The bone scan I had last week showed my whole spine involved, and it's no longer just bone, but also the marrow that's cancerous. I have fears of my spine just crumbling like an old cookie. I need to talk to someone, I guess, about how fragile I am. It's a weird fear to live with.

    I hope no one who is new to stage 4 cancer is thinking that this is their future. This is just one outcome for one patient. I wish I could remember who I'm quoting, but I like to say to myself when I get too bigheaded, "You are one data point. You are not a population study."

  • kbl
    kbl Member Posts: 2,775
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    @ninetwelve I know we are all different, but I did want to let you know it’s been in my spine in all my bone and bone marrow for ten years. Oddly, I’ve been anemic but never enough to get a transplant, and my bones have never broken. I also have had it in my stomach for over five years. How is your red blood cell count? I don’t want to make your decision any harder. I just wanted to let you know. Hugs.

  • sondraf
    sondraf Member Posts: 1,617
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    @jodyj I see you are currently on Xeloda but are switching shortly - is there a reason for a less than two month run? Or is it to get worsening symptoms under quick control?

    @ninetwelve I think you mentioned a few months ago you were feeling about ready to call it good, and were going to try one last treatment. You've had a lot of time to sit with this decision and have been through so much in the last year or two. We will all eventually reach that point where you just want peace and freedom from the endless grind, even if it means death and eternal rest. Could you keep us updated on any difficulties in accessing hospice or EOL care? Or tips?

  • jobbibo
    jobbibo Member Posts: 85
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    @ninetwelve I’m glad to hear your oncologist worked with you on a referral to hospice. It’s also nice you’re able to use a prescription through EOLCOR. Don’t have anything like that here in Nebraska and wish things like that are more widely available. Hoping you’re doing well and at peace while going through this transition. I’ll be thinking of you.

    @kbl It’s very inspiring to hear you’ve managed having it in your bone marrow for 10 years. Admittedly I don’t know much about that but I’m so glad to hear you’ve been able to go through this with no broken bones! I’m concerned about getting fractures with bone mets and knowing you’ve been able to avoid that for a decade is very encouraging.

    I got the results from my brain MRI back and all is clear there. I had my CT and bone scan yesterday and called them today to see if I could get results before the holiday weekend. The nurse called back saying my MO hasn’t signed off on them yet so I won’t be able to go over the details until I see her next week, but the nurse at least said “I will say it’s good news” so I’ll take that for now!

    Going into Thanksgiving weekend just wanted to say I’m so thankful for everyone on this thread. I learn so much from you all and I’m glad there’s a place to connect with others going through the same thing. Sending my love to you all! 💕

  • denny123
    denny123 Member Posts: 1,487
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    @ninetwelve I am so sorry that this so hard for you. In 2004, my liver was so filled with tumors that I only statistically had a year to live. But I am still here.

    I pray that you can find something that will help you.

  • jodyj
    jodyj Member Posts: 55
    edited November 2023
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    @sondraf, I barely got through the first cycle of capecitabine and never managed to get into the second. Really terrible abdominal symptoms, couldn't eat, rapid weight loss. On top of this, my oncologist saw tumour markers continuing to rise as a sign that the drug would not work well for me. It seems to be the abdominal disease causing the problems. The IV chemo will get into my system without my having to eat solid food, as required by the capecitabine. I guess the Taxol won't be a day at the beach either, just a different set of challenges. Waiting for pathology results from my diagnostic laparoscopy. Expectations are it's the lobular breast cancer.

    Just wanted to say, I'm amazed at how much better I feel today, 2 days after the procedure. How the body heals, even mine, after injury (surgery). It's been quite a few weeks since I was on any treatment, so that's a factor, I guess.

  • kbl
    kbl Member Posts: 2,775
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    @jobbibo Thank you.

    I’m so glad to hear your scans were clear. It’s great that even though you didn’t officially get your CT scan results that the nurse could let you know it was great news.

    Happy Thanksgiving, and I’m also very thankful to everyone on this forum.

    @jodyj I’m glad you’re feeling better after your surgery. I’m sorry you had such a rough time with Capecitabine. I’ll be thinking of you as you start your new treatment.

  • jodyj
    jodyj Member Posts: 55
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    Thanks, @kbl. Happy Thanksgiving to you and to all celebrating in the US!

  • ninetwelve
    ninetwelve Member Posts: 328
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    kbl - thanks for the encouraging words on the spinal mets and breakage. I will admit, I called the cancer center nurse to ask if my bones would break and leave me paralyzed. Felt like a stupid question, but had to ask. She said she'd never seen that, but spinal cord compression could happen but there would be warning signs like numbness, weakness, or loss of bladder and bowel control, and I should get to urgent care if those symptoms show.

    sondraf - I am quitting active treatment, but I hope to have a couple of months of relatively good time. The disease has not yet impacted my digestive tract. We'll see. Saturday, two of the volunteers with EOLCOR are coming over to go over the process. I will make updates. Might move them to the Death & Dying thread or a hospice thread, if there is one.

    jobibbo - thank you for the kind concern. I am living one day at a time, and I don't think about it as a transition. I just think I'm here and one day I won't be. I might help myself to an easier earlier death than I might have had, but that is because I watched my sister, my mother and my father all die in hospital in the las ten years. I want something different for my end. Congratulations on your scan! Good news is always welcome.

    Denny - your story is so inspiring. And thank you for your hope that I might find a new treatment to help. As I lose mobility and find there are no more days without pain, it gets harder to fight. I'm told that many oncologists refuse chemo for themselves if their cancer is advanced. They've seen how hard it can be.

    jodyj - I went from Xeloda to Taxol. Not everyone has a hard time on Taxol. I actually felt worse on Xeloda. On Taxol I just had partial hair loss and fatigue. It worked pretty well, too, for a year or so. Best of luck with it.

    Happy Thanksgiving, to all who celebrate it!

  • jodyj
    jodyj Member Posts: 55
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    Ninetwelve, thank you for your encouragement on the Taxol and for sharing your overall perspective, which really resonates with me. I wish you pain-free, peaceful days.

  • jobbibo
    jobbibo Member Posts: 85
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    @jodyj I just got done with 6 cycles of Taxol and I did relatively well when it came to side effects. Hair loss and fatigue were my main issues as well. Felt winded pretty easily if I wasn’t taking it easy. I hope Taxol works well for you and with minimal side effects!

  • jodyj
    jodyj Member Posts: 55
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    So good to hear, @jobbibo! Thank you for that info!

  • kbl
    kbl Member Posts: 2,775
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    @jodyj Thank you!

    @ninetwelve I have had written in a report mild cord compression but have not been bad enough to have the numbness and tingling. Now that I think about it, for a few days I was having weird sensations in my left foot I had never felt before, but that has cleared up for now. I don’t think your question was stupid at all.

    I hope for you is that you have many months pain-free and enjoy your time away from the treatment. I will also make that decision to go off treatment if it affects my QOL for more than a few weeks. It’s such an individual choice. We don’t have end-of-life assistance where I live.

    I electronically checked out a book called The In Between by Hadley Vhelos, a hospice nurse. I am not a book reader, I actually don’t like reading, but I read this book in two days. I really liked it.

  • kbl
    kbl Member Posts: 2,775
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    Thank you, Wendy! I really appreciate the article.

  • denny123
    denny123 Member Posts: 1,487
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    @weninwi Thanks so much for sharing that article!

  • jobbibo
    jobbibo Member Posts: 85
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    Hello, hope everyone is doing well!

    Wondering if anyone here has had personal experience / opinions on breast surgery. Especially being denovo I wonder if that makes a difference when it comes to it being beneficial. I’ve definitely seen conflicting studies and I know it’s not fully proven to be beneficial but part of me wants to be aggressive as I can.

    I met with my surgeon today who said she considers herself to be more aggressive and would gladly do it (either lumpectomy or mastectomy) if my oncologist is on board with it / if it wouldn’t interfere with my treatment. I’m supposed to meet with my oncologist tomorrow to go over the details of my scan and talk about treatment going forward. I am supposed to start the clinical trial I’ve been talking about and assume if I do want surgery I would have to do it before officially starting, and not even sure if I could join the trial if I do surgery first. Lots of questions to ask my oncologist tomorrow but just trying to get a sense of what other denovo patients have gone through. Or even if there’s certain questions I should be asking.

  • mojos
    mojos Member Posts: 33
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    Greetings! I am de novo also (12/19) and had my left breast removed as that is where the original tumor was located.

    My oncologist was originally from China and felt that sometimes surgery was warranted; the surgeon agreed.

    However the surgeon did not touch my lymph nodes even though cancer was also present in some of them. She said the cancer was so deeply embedded in the lymph nodes that I would end up with lymphedema if she touched them. I have no regrets about having surgery.

    Mary Jane

  • olma61
    olma61 Member Posts: 1,025
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    One reason medical oncologists don’t like to go along with surgery is because we have to go off our other treatment for the surgery and healing period.

    My first oncologist said no in the beginning but after I was NEAD for 18 or 21 months, she suggested I go for a surgical consult. But I left that practice and the next oncologist was against it. Also said surgeons at that hospital were conservative about it.

    Then my third oncologist was in favor of surgery for me in theory but I didn’t stay around long enough to explore it fully.

    Currently, I had a mammogram a couple months ago and the radiologist suggested a surgical consultation because no cancer was detectable in my

    breasts but my MO said no, as long as there is no tumor activity in the breast we will leave it alone.

    Side note: Yes, I am managing to be a digital nomad even with MBC!

  • illimae
    illimae Member Posts: 5,624
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    Bobbi Jo, my team left it up to me due to the conflicting studies but I wanted that tumor gone, so I opted for a lumpectomy with reduction and lift to match. I was a DD before and full C/D after. The surgery was a single OR with the breast surgeon first, then the plastic surgeon, both did great jobs. The drains absolutely sucked and mine were still draining at 5 weeks, fortunately had lots of sick leave.

    I don’t know if removing the primary tumor helped but I’ve had nothing new in my body, just the single bone met I had at diagnosis, which has been healed for years. No regrets here.

  • denny123
    denny123 Member Posts: 1,487
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    I had my double immediately in 2003. Then my extensive liver mets were found. They were NED in 2004 and I had my recon in 2005 while I was on Herceptin. I really don't remember if I had to take a Herceptin break or not.

    I have often asked if my dmx was necessary since I was already Stage 4 de novo. And there are various opinions on it. Too late now.

  • divinemrsm
    divinemrsm Member Posts: 6,160
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    In my case, I had chemo prior to surgery to shrink the tumor in order to have a lumpectomy rather than mastectomy. I had no lymph node involvement so I opted to have none removed. No one at the time told me I couldn’t have the lump taken out.

  • bsandra
    bsandra Member Posts: 1,017
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    Dear all, dear BobbiJo,

    I am always writing here on behalf of my wife but I have been 100% involved in whole MBC de novo journey of hers and I from my experience while interacting with doctors, speaking to patients and knowing recent studies regarding primary surgeries for de novo MBC patients, I can for sure tell you that the surgery to primary site, especially when it is not in pCR, MUST be discussed. Rationale FOR surgery:

    1. Most of mammograms even after pCR (and mostly in case of bigger tumors) in breasts show calcification (dead cell and their by-product residue). In many cases these calcifications still have alive BC cells that are not accessible to drugs (this is why they survived), they still have vascular system to supply them and can survive and mutate further, therefore it is not only a source of probable local recurrence but a source of insemination of other distant organs that still were "clean" or under current drug control, i.e. drugs were working on current mutation in that organ. When much calcification after treatment is observed, recurrence is frequent. So why to wait for it when it can really come with critical consequences?
    2. When there's no pCR in the breasts and level 1-3 lymph nodes and other organs are stable on X line treatment, and, especially, when light progression/bounce back is observed in breasts/lymph nodes, I'd say surgery would be very very logical. Rationale: a) you reduce tumor burden which is very taxing psychologically and on your immune system; b) stay on the same drug and save next treatment lines for the future; c) diminish the possibility of progression in that site; d) breasts and auxiliary LNs are NOT vital human organs and, however cynical it may sound, we can live without them.
    3. Any tumor, even tiniest, in your body is a source of possible mutations which in most cases is big big trouble (only in rare cases and coincidences it can save you - when you acquire a mutation that is super sensitive to some drug). So, everything that is assumingly localized and can be cut out without impacting main human body functions, is very advisable to be cut out.
    4. Often stage IV de novo is diagnosed being oligometastatic (<5 lesions outside of breast area, or now, as some contemplate, any number of small lesions in one organ) or with small most probably uniform metastatic burden, so if metastatic lesions experience response, and breast area less (which is possible due to many drug delivery problems and others), I think surgery must be done.
    5. If we'd take stages IIIa-c, we know no one can guarantee at the time of diagnosis that they are not stage IV, just there are almost no ways to prove it (liquid biopsies, CTCs are still not most reliable methods), but these people are always treated according to the protocol neo-adjuvant CH→surgery→adjuvant CH, and many of them are cured (time-proven), so who said that some stage IV patients, especially de novo, are not some, let's say, "stage 3.85"?

    Our short story/anecdote (it is in another form in the signature) to prove some points above: my wife was diagnosed stage IV de novo with 7 cm primary tumor and "countless" small mets to liver (proven by biopsy). Progression happened in weeks - from nothing to 7 cm until all diagnostics and biopsies were done… After 12 cycles of THP she got a pCR report and relapsed after 9 months later in the same breast only with very fast IBC symptoms. Docetaxel was reintroduced for 6 cycles (without interrupting trastuzumab-pertuzumab) and she again reacted very well but eventually started to progress in the breast again. We went for 3 opinions for surgery: 1 sayed "yes", 2 said "no" without any further perspective. However, the "yes" opinion and explanations were these I wrote above, and really convinced us. Till this day we think it was one of the best decisions we made. Then followed another surgery for 5-7 mm suspected LN removal (5 were removed, 3 were malignant) and then a cyberknife to another 3 suspected LNs. She's still on trastuzumab-pertuzumab, and NED in liver and everywhere else as of 3rd of November, so, NED in liver since April 2018. I often think, where would we be if not these local treatments and decisions that were made on time?

    Again, I know there are many cons regarding surgery - disfiguring, lymphedemas, psychological effects, etc. but if our ultimate goal is to live with at least adequate QoL, in many cases surgery can help achieve it. Brilliant example is NED population where in certain sub-groups survival at 5 years after MBC diagnosis is nearing 100%. So to put you into NED/NEAD state should be, seems so, the first and most important goal of treatment. If surgery can help achieve it, I think decision should be to go for it.

    Hugs and sorry for a long post,

    Saulius

  • jobbibo
    jobbibo Member Posts: 85
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    mojos, olma61, illimae, denny123, divinemrsm, bsandra Thank you all so so much for sharing your experiences, thoughts and rationales regarding surgery. This has given me a lot to think about and I’m glad I know all of this going in to talk to my oncologist today. I’m so glad to hear that those that have done surgery seem to be glad they did, that makes me want to advocate for surgery. I appreciate you all so much! I am concerned what this will mean for the trial but I’m hoping my oncologist would be on board with be having it before starting the trial and that it wouldn’t disqualify me from joining. 

    bsandra - Your wife’s situation sounds pretty similar to mine. I had a very fast growing primary tumor and by time I did a breast MRI it was 7cm with countless liver lesions as well. Have been on THP for the last 6 months and my scan in August showed a great response in my liver. Hoping I learn this most recent scan continued to knock it back. I’m so glad to hear she’s been NED for so long! And so glad you found someone willing to do the surgery. Your point of potential active cells in a dead tumor really spoke to me. I can still feel my primary lump and the thought of leaving that there for it to potentially be the source of a mutation makes me really want to push to remove it.