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De Novo Stage IV

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  • kbl
    kbl Member Posts: 2,797
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    Hi, Jensgotthis. Thank you for your story. All the traveling you’ve done sounds fantastic. I’m not big on traveling myself, I hate flying, but it’s so awesome to be able to if you love it.

    I’m glad you’re doing so well with no evidence of active disease, and I too try to live in the moment as much as I can.

    I think you’ll know when it’s time to stop working. Something inside says it’s time. I know it’s hard when you love what you do. Spending time with your son is so important too. You don’t say how old he is. I hope he is still the age where he wants to spend time with you. Those teenage years get tricky. Or maybe he’s past that.

    I hope you come in and join in the conversation any time.

  • snow-drop
    snow-drop Member Posts: 526
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    Jen, your story inspire me and everyone here, brave and strong young lady.

    Laura, you will find tons of support here and other threads that you already were told.

    Hjnet, I am glad your recovery is speedy.

    Lynn thanks, it’s been rough time since April, finally I found some peace. Since I got the news I am mostly sleeping!!! My body needs rest after months of stress and sleepless.

    Hugsss to all.

  • lauawill
    lauawill Member Posts: 5
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    Hey, gang.

    Echocardiogram was clean as a whistle. No big surprise there. I've been a distance athlete of one kind or another (swimming, biking, jogging) since I was 10 years old.

    But the CT scan showed mets on my liver, which they thought they saw on the MRI ... and my lungs. But on the outside of my lungs. The Nurse Practitioner read the notes out to me, and it sounds like the mets are in the pleura, not the lungs. Both the NP and the radiologist noted that that was weird and not something you see every day.

    So that was discouraging. But it doesn't change the treatment plan. I started chemo today. I'll go back for a Neulasta injection tomorrow, bloodwork next Tuesday, and then chemo every other Tuesday until the end of September. After that, it'll likely be weekly infusions for 12 weeks, then Tamoxifen. I'm hopeful that this aggressive chemo regimen knocks the cancer down enough that I can put it on the shelf for a while with Tamoxifen and have a few more good years. We'll see.

    Thanks for all the support, gang!

    Laura

  • snow-drop
    snow-drop Member Posts: 526
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    Laura, I am so sorry about the news, those things that showed outside of lungs probably not cancerous, if even they are Mets, outside of lungs are more easy treatable. sounds like your MO has a good plan. Good luck with the chemo, post us how it did go.

    Take care

  • hjernt
    hjernt Member Posts: 20
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    Hello friends! Popping in to update.

    I have been keeping up with all the posts. To all who have received recent poor news, I am here, holding your hand and sending love. This ride is such a roller coaster. Sending strength.

    In my world, I am drain free! I scheduled the drain removal for this past Tuesday and wouldn't ya know it but the drain FELL OUT that morning in the shower. I took it as it was meant to be. Doc said everything looks good, tossed some neosporin on it with a bandaid and sent me on my way. Happy day. It is still a little swollen but similar to my left underarm after surgery. The left arm is pretty good now so I have hopes for the right one.

    Had my first Xgeva shot in my arm last week during H and P treatment. Seems to be ok.

    Two more weeks to go before I can start working out again. I have been good, only walking several miles a day or riding the stationary bike relatively slowly. I get bored on my walks tho, even with audio books.

    Hot flashes are better! Not gone but better. Am taking Effexor and moved to taking it at night because I was queasy all day when I took it in the morning. Either that helped or just being more healed from surgery helped. Either way I am not as bad.

    Started tracking my blood pressure daily. Easy enough but depressing because it's still running high. I hope exercising more will help but I will have to see what the cardiologist wants to do. Would be a drag to take yet another medication.

    Speaking of medication, my MO put off starting me on my AI for another three weeks as I continue to recover. Looks like I'll be starting Letrozole. I started taking glucosamine since I have been having some pain in my fingers when I wake up. It seems to be helping.

    OK, enough about me. Thanks to all who come together to share and support. I got chu. 😊

  • sondraf
    sondraf Member Posts: 1,631
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    hjernt - glad to see you are recovering from that surgery. Hows the ooph healing coming along?

    KBL - if your spine stuff was there since 2013 - that is amazing its been kept in check without drugs. Look at it this way, what if you had developed resistance in that time? Then you wouldn't be able to start now. Or at least I hope I understood your situation correctly :)

    Ive been dealing with Future Things this week in terms of housing and investments, and where we want to be living in the next 18 months to 2 years, what I want in terms of a home. Most of the time I am ok if I focus on the now, but thats not always possible. We went out for lunch and I brought up that if we go home to the US then it would be smart, if he wants it, for OH to secure UK citizenship if he wants to return in the future, with the implication that I don't need to apply because I won't be here. Its all very practical but I got teary at the table and I've been feeling really restless all week. But - next week is Hospital week for injections and MO, so instead of PMS I get PHS. So far my MO appt has not been changed to phone, perhaps it will be a longer discussion than normal.

  • hjernt
    hjernt Member Posts: 20
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    Hi!

    Sondra, recovery from the ooph had been far less eventful, thankfully. I have started to have some discharge recently but believe that is normal. It's slightly discolored. It's the ooph that required me to take 6 weeks off exercise and doesn't allow me to lift anything heavier than 8 pounds. I've got 1.5 weeks to go. Today DH and I walked 5 miles and then I had a nice nap. That's a good Saturday!

  • snow-drop
    snow-drop Member Posts: 526
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    SondraF, thinking of you, I hope you have a productive meeting with your MO and that he provides you with good news. Honestly, I wouldn't bother to see my MO every month if I could, he is source of stress.
    I'm sorry about other stuff that caused you stress. There are loads of issues that we are dealing with every day rather than mbc, but sometimes I am thinking if I am handling mbc (well I try...) I can do other stuff as well. Good luck with whatever you decide.
    let us know how your meeting went when you have a chance

  • kbl
    kbl Member Posts: 2,797
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    Hi, Sondra. So sorry it's taken me so long to respond. I've been busy and sleepy.

    I'm beyond confused how I've been so lucky to have this disease in me for so long and not have treatment, but all I can think is it's been super slow growing. I'm just hoping it continues to be slow. Because there's been significant progression, it makes me nervous. I don't cry often, but I let out some tears with my husband today. It actually feels so good to do that sometimes. It gives me a release to keep moving forward.

    I hope your MO visit goes well and things come together with your decisions. It's so hard to plan when we don't know what is ahead.

  • Bliss58
    Bliss58 Member Posts: 938
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    KBL, gosh it's awful it's taken so long for you to get answers, but glad you finally know. My understanding is that bone mets are generally slow to grow, so you are lucky there. Sometimes it all just builds to a breaking point and a good cry is what we all need for relief. Hugs.

  • kbl
    kbl Member Posts: 2,797
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    Thank you, Bliss. I think the hardest part is wondering if we had known back then what we know today, could we have kept it from spreading to my stomach? I think that weighs pretty heavily on my brain. I know I can’t play the what-if game for long, but I’m going to allow myself some grace and throw a pity party for a minute. It’s only been a week since I’ve known, so I do have to let myself grieve a little. Thank you for the hug, and I’m sending one back your way.

  • cyathea
    cyathea Member Posts: 337
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    KBL , the "what if" thoughts are tough to squash for sure, but good for you to give yourself some grace to just have a moment. You are right! It's only been a week. It's a lot to take in. I think you brain needs time to process and get its balance. You'll get there! (((Hugs)))

  • kbl
    kbl Member Posts: 2,797
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    Thank you, cyathea. I appreciate the hugs, andhugs back to you.

  • olma61
    olma61 Member Posts: 1,026
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    saw the MO today and asked about mammograms and surgery, so thought I would update

    Mammogram, yes, she gave me a script, thinks it will be useful

    Surgery, for me, no, unless cancer in the breast becomes active again, she doesn't refer metastatic patients for breast surgery. She discussed the studies with me, says there are mixed results and that surgery for Stage IV is still controversial.

    I will get the mammogram and be happy I don't qualify for a referral for surgery from her right now

    Hjernt, I hope your recovery is still coming along nicely

  • cyathea
    cyathea Member Posts: 337
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    Olma61, thanks for the update. I’m glad you and your MO decided that surgery wasn’t the route for you. You will be saved from complications like nerve damage, lymphedema, and of course, loss of your breasts. I think doctors are right to be careful with their surgery recommendations.

    If I had had a smaller tumor and not both ductal and lobular in both breasts, I would have been more comfortable with not going down the surgery route as well. My chemo wasn’t able to get rid of the cancer completely in my right breast/lymph nodes, so I’m glad to have my breasts removed from being a source of disease, but I wish that had not been the case.

    The important thing is that we need more research on this to help us decide when surgery would help and when it wouldn’t. Without definitive research the decision is sometimes impossibly hard.

    Wouldn’t it be great if medicine would get to a point where surgery wasn’t necessary for any woman with breast cancer?

  • olma61
    olma61 Member Posts: 1,026
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    oh yes, to your last question, definitely yes. I have thought about that myself , that maybe at some point immunotherapy and/or gene editing could make cancer surgery obsolete. Certainly would be a wonderful thing.

    The possible after effects of surgery was something that I definitely considered when my old MO first spoke to me about it.

    Honestly, the most attractive thing for me about surgery was that my doc had said any cancer that was found could undergo genomic testing and the results would help determine a treatment if or when Herceptin failed me.

    But that bridge can also be crossed if needed down the road.

    And yes, we surely do need more definitive research about this and so many other issues for MBC. We have come along way but there's still a very long way to go

  • snow-drop
    snow-drop Member Posts: 526
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    how is everyone doing? Let’s keep this thread active, ladies. Long weekend ahead, wish everyone luck especially for some of us waiting for results, due tests.

    Xxxx

  • ninetwelve
    ninetwelve Member Posts: 328
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    Haven't posted a lot recently, but I'm still checking in. My next scan is scheduled two weeks from now, two days after my "cancerversary". Every year I think "this could be my last one." So far, I've been wrong five times.

    Don't usually use painkillers, but last night I was glad to have extra strength acetaminophen on hand. Took two for the sharp pains in my armpit.

  • kbl
    kbl Member Posts: 2,797
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    Hi, everybody. I had a neck MRI and now know I have the cancer from the top of my spine all the way down to the bottom. They couldn’t figure out what specifically is causing my swallowing issues, so I’ll just keep an eye on that. I have quite a few sinus things going on, but they aren’t really causing symptoms, so I’ll watch with that as well.

    Started Zometa on the 24th, and I felt like I was run over by a bus two or three times. I did nothing but sleep for 2.5 days and take pain reliever to get back to normal. I had just what they said, flu-like symptoms, fever of 102 and severe aches from the top of my spine through my hips. I hope that doesn’t happen again.

    I hope you’re all doing well.

    Hi, NineTwelve. Good luck with your scans, and I hope the pain lessens for you. I hope this is one time you keep being wrong.

  • snow-drop
    snow-drop Member Posts: 526
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    9-12, I hope you keep being wrong for many many more years. My cancersary is around as well! Haven’t heard this term before.

    KBL, I was on zometa for 6 months, I experienced sever bone and joint pain, one or 2 or more days after and few days before taking zometa. I used hot pack for spine pain, joint and feet pain. For flu-like symptoms, I drank ginger tea a lot, that well- worked for me. For some people, those symptoms get better over time but not for me, I hope you overcome it.

  • kbl
    kbl Member Posts: 2,797
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    Thank you, I-beat-it. I’ve been told if it doesn’t get better with this infusion, they’ll switch me to Xgeva. I would not want to go through that every month. Thank you for the ginger tea idea and hot pack idea. I will remember that next time.

  • snow-drop
    snow-drop Member Posts: 526
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    you are most welcome KBL. I switched to xgeva because I didn’t get benefit from zometa, lesions kept growing in my spine. Dunno those growing related to any bone strengthener or not, but once I suggested xgeva to MO, he didn’t disagree! He is usually single-minded!

    I am now in 3 hours waiting between injection and bone scan...

  • hjernt
    hjernt Member Posts: 20
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    Hello friends!

    I am happy to be starting my exercise routine back up again. Am taking beginner classes on the stationary bike and strengh classes. It is hard to start over but I know I will catch up. Had H and P treatment last week and am doing well. Have Xgeva every other treatment. Started Anastrozole at night. Am doing fine. Still 'enjoying' hot flashes but I carry on! Lots of fans in my house!! Like every room, lol.

    Am scheduled for bone density and nuclear bone scan on 9/14. Baseline for density, curiosity for bone scan. I am nervous but feel better knowing what is going on in there. A Lot has happened since my bone scan in January.

    Love and strength to you all!

    Looking forward to a quiet long weekend. Fingers crossed for slightly cooler weather here in Texas. Even Temps in the 90s would be fine after the over 100s we've been having.

  • kbl
    kbl Member Posts: 2,797
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    hjernt, I’ll be thinking of you when you get your tests. I had no luck with bone scans ever showing anything.

    I have had hot flashes since long before I started medication, so I can relate.

    We are in the feels like 100s, and it’s just awful. I love sitting outside and can’t even do that for more than a few minutes.

    Have a good weekend.

  • seeq
    seeq Member Posts: 1,132
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    KBL, thanks for starting this thread. I've learned a lot by reading all the previous posts. The biggest thing I've learned is how much my BC sisters support each other!

    My story --

    Background - Family cancer history is limited to maternal grandmother's ovarian cancer and my mom's minimal skin cancer. I've been generally healthy - when going over my health history, I always told the nurses I was very boring. In 2013 and 2015, ultrasound and MRI identified a benign hemangioma in my liver, which remains unchanged. Annual well-woman checks and mammograms every year - dense breasts, always clear. 2016 complete hysterectomy (large, completely benign fibroid) and HRT (in hindsight, that's not so great, but I was very low risk and who knew?)

    July 2019 - Last clear mammogram. Blood tests showed slightly elevated liver enzymes. 3-4 additional blood tests over the next 9 month had mixed results; the last test showed a high GGT (I think it was the first time they ran that one).

    March 2020 - PCM referred me for u/s of liver. That took over a month, because at about that time, "elective" procedures were halted for COVID-19.

    April 2020 - MRI scheduled 4 days after u/s - which automatically makes you think it's something serious. MRI showed an 11.8cm mass, and "numerous" smaller masses, the largest of which was 3.2cm. Referral to GE, who ordered biopsy, which took over 3 weeks because *those* elective procedures were still on hold.

    May 2020 - Biopsy results showed IDC liver metastases - so , just like that, de novo stage IV. GE said mets basically took up the whole right lobe. Big surprise for everybody, especially me...because I had all clear mammograms, right?

    June 2020 - PET/CT scan, mammogram and breast u/s identify 15mm spot very low in my left breast. Frankly, I'm not convinced they would have found it in the mammo and u/s, except for the liver biopsy and PET scan results. (I actually left the imaging center to go to the hospital to pick up PET scan imaging disk and bring it back -- saved me coming back another day).

    I can't tell you how many people asked me, so you've never had breast cancer before??? (Like maybe I forgot??)

    My 2nd opinion MO said the biopsy results indicated slow growing, so it was likely those little buggers had been growing for years -- but not too many years, because my liver was clear in 2015.

    It's frustrating. I feel like I held up my end of the deal for early diagnosis; it just didn't work out that way. Anyway, I'm keeping a (mostly) positive attitude; I'm good until I'm not good. I'll feel like I'll be able to breathe easier when/if I get confirmation that the tx is actually working.

  • kbl
    kbl Member Posts: 2,797
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    SeeQ, wow, thank you for your detailed story. It's amazing how this disease grows and is missed. I'm sure you know mine has never been found in my breast. I have another thread where I explain how my diagnosis was totally missed since 2013. I am grateful my cancer has been slow to grow, as I had no treatment for those first six years because I didn't know.

    I hope you're doing well on the treatment you've listed. Are they going to do anything about what's in the liver or monitor with scans?

    I'm sorry you had to join this club. Please keep us posted with how you're doing.

  • seeq
    seeq Member Posts: 1,132
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    KBL, I think it is amazing how long the MBC can be growing undetected and symptomless. It really is a blindside.

    I start my third cycle of Verzenio tomorrow. Right now, the only plan is for the Verzenio nd Anastrazole - provided they work as expected. My TMs were way up at the befainning of August, but were down a little Tuesday. I'm hoping it's just a tumor flare and my scans next month will be good.

    I don't think I'm a candidate for local treatments, because of the size of the largest tumor, and maybe proximity to larger blood vessels (?). I just switched MOs between August and September. We briefly discussed the possibility of local treatments at some point and it's still on the table for consideration later.

    Do I understand it right that the ILC is really different and doesn't always show up on scans? If so, how do they monitor your status?

  • kbl
    kbl Member Posts: 2,797
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    SeeQ, yes, ILC is known to be sneaky. The only way we’ve found it in my stomach is the rough biopsy after losing a lot of weight and not being able to eat more than a few bites, and the cancer in my spine was just found finally a few weeks ago through another biopsy, although MRIs kept saying it was cancer since 2013. No PET scan or bone scan or CT scan has seen anything, and not even an MRI of the breast can find it there.

    The only way I can truly monitor it right now is my tumor markers and how I feel.

    I’ve asked for an MRI of my chest and abdomen to see if it can pick up anything. In one CT they saw a shadow on my omentum and also a “cyst” in my liver. We’ll see if that gets approved.

    My tumor markers are still high, but all three have come down this past month.

  • seeq
    seeq Member Posts: 1,132
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    KBL, I'm sure that must be frustrating. Since the CT and MRIs are the only scans that 'see' them, it would seem like a no-brainer. Is it safe to assume the hold up iw with insurance? or is it a limits-to-radiation issue? or something else?

  • kbl
    kbl Member Posts: 2,797
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    SeeQ, I haven’t had radiation and don’t plan to at this time. My MO is going to talk with me at my next appointment, setting up the MRI. Then we have to see if insurance will approve.