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IBC lounge: roll call, support and just a good place to hang out

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  • bsandra
    bsandra Member Posts: 1,017
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    Dear Mamacure, these scan reports... ahh, they are so distressing. And radiologists write them without thinking, and so much of what they write and see means something to them but might not mean anything. Yes, maybe liver and lungs is something else, and that is why your MO is not particularly worried, and tiny spot in spine can be SBRT-ed very quickly, and biopsy can also come negative. Crap, when I think through what patients go in this journey, it simply makes me dizzy... Hugs,

    Saulius

  • mara51506
    mara51506 Member Posts: 6,199
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    Mamacure, I am sorry to hear you have graduated to Stage IV, when you find that out, takes you back to where you were when you first had it. I hope they can suggest some treatments that you could possibly do that would not knock you out. Maybe a targeted therapy even although I do see you have TNBC. I am in your pocket lending my thoughts to you as you dealing with this again.

  • mamacure
    mamacure Member Posts: 256
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    Thanks Mara. Pathology confirmed bone Mets. Probably more radiation, immunotherapy & low dose xeloda. Maybe other drugs. Hope it will be light. Not again. Hope can get NED soon & go on with life.

  • lw422
    lw422 Member Posts: 1,404
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    Hey MC. I was just coming to post to check on you. So sorry to hear about the bone mets. I hate the news and the treatment for you, and send you love and hugs. Please keep us updated on your treatment and your progress; we all want to know how you're doing.

  • blue22
    blue22 Member Posts: 172
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    Hi Mammacure,

    I'm so sorry to hear about your bone mets. I was really hoping this would turn out to be nothing.

    We are all rooting for you and hoping that the treatment is tolerable and you are NED soon!

    Virtual Hugs!

    Blue

  • mamacure
    mamacure Member Posts: 256
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    Thank you LW & Blue. I pray for NED soon too. Can’t believe it still. Glad to have you all here to lean on.

  • missmom79
    missmom79 Member Posts: 90
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    just checking in with everyone ;) I see they are making changes to the site/ it’s been awhile since I have logged in but still here and doing ok :)

  • traveltext
    traveltext Member Posts: 1,053
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    PLEASE READ CAREFULLY

    Hello! We're reaching out to let you know that we're very close to the launch of our new community forums. The conversations that have been shared here over the past 20 years will be waiting for you in the new forums.


    During this migration, which will begin on March 12 and end approximately on March 23, all newly created threads and posts will need to be moved by the mods to the new forum through a manual copy and paste process.


    Your existing private messages before March 12 will all automatically carry over to the new forums, but private messages sent and received during the migration period can not be moved over. And the threads you favorite during the migration period will not be bookmarked as favorites in the new forums. Please copy and paste any private messages sent and received during the migration period that you'd like to save for yourself in a separate document, and write down any favorites you want to bookmark in the new forums if you selected them as favorites during the migration period.


    We thank you so much for continuing to be patient with us throughout this process. We're doing our best to make sure all conversations continue and pick back up where you left off on the new forums very soon! If you have any questions, you can email us at community@breastcancer.org.

    Many thanks,

    The community moderators


  • preciousbecky23
    preciousbecky23 Member Posts: 23
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    Hi mamacure, I’m so sorry about the news. It sounds like you caught it early so there’s still hope they can attack and destroy those cells to get you NED. Love and strength to you

  • lw422
    lw422 Member Posts: 1,404
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    Hey MissMom--nice to hear that you're doing ok. You need to check in more often!

    Hi Becky! How are you doing these days? Have you completed active treatment? Hope those babies are all doing well, too.

    Mamacure--you are on my mind; sending love and hugs to you. Let us know what's happening when you can.

    To all the IBC family here, I hope all of you are thriving. Check in and keep in touch. I hope the forum upgrade goes smoothly and we don't lose touch with each other.

  • mamacure
    mamacure Member Posts: 256
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    Hi everyone,

    I’m surviving, going in for radiation mapping today and more MRIs soon, my treatment will be radiation, keytruda and back on xeloda at a lower dosage. Radiation should be shorter this time. Already tired of going to the hospital every day. I hope everyone isdoing well and the data migration goes smoothly.

  • lw422
    lw422 Member Posts: 1,404
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    Hey MC; thanks for updating us. I have been wondering how you're doing so I'm glad to see your post. I'm glad your treatment is getting started and I hope it goes smoothly. Bless your sweet heart.

  • mara51506
    mara51506 Member Posts: 6,199
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    MC, I am still in your pocket with regard to becoming stage 4. It is scary but can also be very treatable as well. Drugs given while on Stage 4 are not as strong as when you started out. I will keep sending healing thoughts your way and once you start Xeloda, visit that thread since they have lots of good info about skin care if needed or if people have SE. There will be all the appointments but as much as possible, keep up normal routines. Your still living with cancer, don't let that thought change. Living with it like any other disease, go day by day as well. Let yourself feel angry or cry as well, that helps. Treatments are so much better as I said so will send you healing thoughts and make sure the hospital has a social worker to help as well.

  • lw422
    lw422 Member Posts: 1,404
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    Hey Mara. It's good to see you, and I hope you're doing well. You are so kind to offer support to Mamacure; I know she must be having a tough time right now and we all wish her the best. I keep up with you in Mel's living room though I don't post there. I'm waiting to hear how you like your new sandwich maker!! Take care and keep warm.

  • mara51506
    mara51506 Member Posts: 6,199
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    Although my MO said I was already Stage IV from the start, I did not find out til a year later and I was gutpunched. I can definitely empathize with MC. I am also an example that one can reach no evidence of disease or at least stable, no change and stay that way a long time as well but she is just at the beginning. It is not too much different than the reaction from an earlier stage dx. That is where I learned keeping up the regular life events etc help out. It is also easy to know that after 8 years. My biggest issues are keeping and maintaining balance and strength and learning to get up when I fall. Not the same as cancer.

    As far as posting in the living room, feel free to post. You would definitely be warmly welcomed by everyone and it is not just Stage 4 welcome there, everyone is welcomed.

  • mamacure
    mamacure Member Posts: 256
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    Yes, thank you Mara for the supportive words. Very helpful. So scary, crying everyday but hiding it from the kids. Hate waking up because I feel trapped in a nightmare. Insurance denied Keytruda, hoping it’s a blessing in disguise since no infusion. Radiation then xeloda I hope will keep me stable for a long time. 3 pokes for IVs are not fun. I wish I kept my port…. Thank you LW too.

  • lw422
    lw422 Member Posts: 1,404
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    Hey MC. I've been thinking about you and sending up prayers. Bless your sweet heart.

    I hope everyone of the IBC group is doing well. I had my quarterly checkup visit with my "new" oncologist last Friday. He's OK but definitely not in the same league as my first doctor who left MDA. Since I'm not in active treatment I suppose it's no big deal. One thing does kind of puzzle me, though. He said everything looks good and I can see him in 6 months. I was a bit puzzled by this since the Standard of Care says "Physical exam at least every 3 months for 2 years, every 6 months for 3 years, then annually". My treatment ended in November 2021 so I have only had a year's worth of "every 3 months." Should I be concerned? Can anyone chime in about your checkup schedule?

    I asked him about the 6 month schedule and he said I could return in 3 months "if I prefer." Well, of course I don't "prefer" it, but is it necessary? What do y'all think? I do have a followup with my RO in May, so at least someone will be seeing me sooner.

  • mamacure
    mamacure Member Posts: 256
    edited March 2023
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    Thank you LW. I think 6 months is ok, my last Onc said 4-6 month is fine. If anything bothers you, you can always request to see sooner. Hugs to you.

  • lw422
    lw422 Member Posts: 1,404
    edited March 2023
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    Hey there MC. I agree, 6 months is probably fine; it's not like they are scanning or testing anything when I go. It's more of a physical exam and feeling for lumps or whatever. Since I'm TN there's no followup treatment, which is both a relief and scary at the same time. Now if I could just come to terms with this damn lymphedema.

    I hope you are doing OK. I know the new Dx is still a fresh blow and I just hate it so much for you.

  • mamacure
    mamacure Member Posts: 256
    edited March 2023
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    I started rads to hips & have a mild touch of nausea & dull ache. Not bad. Glad doc ordered new MRI it was a bigger area than initially anticipated. Get it all zapped. Spine will be next. I’m working with a Flexi touch rep & PT to get the arm pump/massager. Meanwhile I bandage & wear the sleeve. Not fun I know. There is a Xeloda shortage so hope it gets here after rads. Insurance rejected Keytruda this time since negative for that P enzyme. Kind of glad no infusion & scared of side effects……take care everyone

  • mara51506
    mara51506 Member Posts: 6,199
    edited March 2023
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    MC, hoping the nausea stays on the manageable side and that a prescription for an anti nausea has been given if you wished. I am still in your pocket send positive thoughts your way.


    LW, I did not have physical exams per se. I see my MO every 3 months down from every 3 weeks before chemo initially and then when it was only Herceptin and Perjeta. We normally check bloodwork, weight etc. My scans are MRI to follow my brain which are four months apart although I will ask if they can move to 6 months and CT Scans are already six months apart. This is because at least for now, there has been no evidence of disease from the neck down for almost 8 years. I was scanned post radiation and chemo and nothing showed up from neck down. My brain MRI readings don't change significantly. Had to have followup rads a couple of years post whole brain radiation to treat surgical field again as a couple of spots showed up. These were expected due to craniotomy being unable to remove part of the tumour that was wrapped around a blood vessel when removing it.
  • lw422
    lw422 Member Posts: 1,404
    edited March 2023
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    Hey MC. I'm glad you got the rads started; the sooner you begin the sooner you'll be done with it. Is the nausea any better? I remember having slight nausea when I started rads but it seemed to go away fairly soon. Did you get the Flexitouch machine? I'm going to ask about one when I see my RO in May. I'm tired of trying to move fluid with MLD and I feel like I need help but I don't know if my insurance will cover it. I hope you are feeling better and that the emotions of a recurrence are settling down. Keep us in the loop.

    Hey Mara. How are you these days? Didn't you have a scan recently? I hope it was good news for you.

    Hope all the IBCers are doing well!!

  • mamacure
    mamacure Member Posts: 256
    edited April 2023
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    Thank you Mara & LW. Yes nausea calmed down & also my initial shock of doom & gloom. Finished 5 rads to the hip, mri found bigger margins so glad my radiologist asked for mri, she’s thorough. Couple of days rest was good before starting rads to the spine later this week. I’m hoping I get big relief from that & not too much fatigue. I pray for stability like Mara soon. Drastically changed diet again mostly veggies eggs tofu. Made vegetable soup too. Missing toast, pastries…..also cut out coffee for now. All the fun things…Flexitouch coming this week, will get training after rads will let you know how it is LW. Lymphedema really sucks. When resting, I try to bandage it then put sleeve back on. Take care!

  • mara51506
    mara51506 Member Posts: 6,199
    edited April 2023
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    Don't forget your red blood cells and iron. Beans and spinach should feature in some meals unless they already do. In your pocket for support.

  • lw422
    lw422 Member Posts: 1,404
    edited April 2023
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    MC--I'm so glad the nausea has calmed down and your anxiety has settled a bit. I'm sure you will still have those "unscheduled meltdowns" that we all are familiar with!! I'm glad you're done with the first rads and on to the next!! I'm keeping all things crossed that you'll feel significantly better when done. Let me know how it goes with the FlexiTouch. I was reading over my insurance coverage and I'll have to jump through hoops with PT in order to qualify, so at this point I'll just wait and see. Take care and thanks for the update.

    Hi, Mara!!!

  • mara51506
    mara51506 Member Posts: 6,199
    edited April 2023
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    Hi LW, good to see you again.

  • lw422
    lw422 Member Posts: 1,404
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    Hello IBCers. Hope this finds everyone doing well; please check in when you can and let us know how you are. I don't have anything new to report which I suppose is a good thing. I am still considering a prophylactic mastectomy on my remaining breast since I can't ever seem to get comfortable with the uniboob (D cup). It has been a year and a half and still annoying to deal with. The only thing that prevents me from moving forward is my unrelenting fear of having lymphedema on both sides…ugh.

    @mamacure — how are you and how is treatment going? Did you find the Flexitouch helpful? Hugs to you.

    Everyone take care and post something; we need to keep up with each other! ❤️

  • dancingdiva
    dancingdiva Member Posts: 317
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    I can’t get used to this all white background!
    I have my ca 125 doubling everytime I get bloods every few weeks but the scans show nothing. I’m so tired of being a mystery to my docs. I have a red patch on my chest where my port is…. They don’t think it’s cancer but I think it is. Everything about me is always so rare.

  • traveltext
    traveltext Member Posts: 1,053
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    dancingdiva. Everything about this disease is weird, so rarity fits the bill. I hope you can sort this all out

    I'm fine, NED. Still writing articles.

    mara LW, you are great stalwarts of this thread. Good on you both.

    Quite a fan of the new design and the many new features, although I read many aren't.

  • lw422
    lw422 Member Posts: 1,404
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    Hello @traveltext ; hope you are well. Thanks for your kind words… sometimes I feel like I'm just talking to myself as it seems most of the IBCers have moved on. Take care.