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

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Comments

  • traveltext
    traveltext Member Posts: 1,053
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    Mara is a BCO champion with an inspiring story. She has graciously agreed to share her journey:

    https://advancedbreastcancer.net/living/mara-interview

  • lw422
    lw422 Member Posts: 1,404
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    Excellent job, Mara and TT!! Thanks for sharing with us. You guys ROCK.

  • mara51506
    mara51506 Member Posts: 6,199
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    Thank you lw422 and TT again, it was a good opportunity for me and perhaps I can help people along the way.

  • bsandra
    bsandra Member Posts: 1,017
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    Dear Mara, I am certainly a big admirer of your optimism, inner strength and help to others here on BCO. All best wishes from Lithuania, Saulius

  • mara51506
    mara51506 Member Posts: 6,199
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    Thank you Saulius, I really appreciate you saying that.

  • preciousbecky23
    preciousbecky23 Member Posts: 23
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    Hi all! It’s been a while since I last posted, but I think of you all often and hope you’re doing well.

    Mara and TT, I just saw and read your interview, props to you both! Mara you are such a light and your positivity despite all you have been through is so inspiring. Thank you for sharing your experiences with all of us. Hearing your story gives many of us hope :)

    An update on my end: finished protons 8/5, skin held up decently with the exception of some rawness under my arm that healed up pretty quick. I was screened for a trial offered at UPenn for TNs with residual, but didn’t qualify because my ctDNA came back negative (which I guess is a good thing?) so I started Xeloda and will begin my 3rd cycle this week. I’ve started to develop HFS (redness, tightness, burning and sensitivity/pain) but it definitely gets better during my week off, so hopefully it doesn’t get TOO bad with subsequent cycles (8 total planned) so we will see.

    Otherwise keeping very busy with the 4 little ones! I’m going to try to check in more often here.

    Hugs to you all :)

  • lw422
    lw422 Member Posts: 1,404
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    Hey Becky! It's great to hear from you; I have wondered how you're doing with treatment. Hang in there, girl... the end is in sight. I hope you can make it through Xeloda with minimal side-effects to deal with. I'm learning to deal with mild lymphedema which really brings me down emotionally, but we do what we have to do.

    I hope everyone is doing OK.

  • dancingdiva
    dancingdiva Member Posts: 317
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    Mara thanks for the interview. Nice to put yourself out there.

    Precious, good luck on xeloda. If ur

  • mara51506
    mara51506 Member Posts: 6,199
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    Thank you Becky and Dancing Diva, I enjoyed answering the questions and giving perspective on my experience. If it helped others then I am very happy. It was kind of TT to think of me.

  • blue22
    blue22 Member Posts: 172
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    Hi All! I haven't checked in in a while, but still look here now and then to see how everyone is doing.

    LW - sorry to hear about the Lymphadema. I was pretty paranoid about that for a long time... hopefully yours is tolerable!

    Mara - Thank you so much for all your input - it gives us all hope!

    Becky - I don't remember if we've ever responded to each other's messages - I am happy to share Xeloda experiences - I did that for 6 months along with HP after I was finished with radiation. I remember the mild HF syndrome and that I had to be careful of not walking too much or even putting pressure on my hands doing yoga... I had weird brain fatigue issues too.

    TT thank you for all the advocacy you do!!!

    I'm tired of all the nonsense that goes along with BC, work stuff, disability insurance etc. I feel like every time I start to get closer to normal, I fall back down again. I finally lost my job a few months ago (was a long time coming...) and was doing ok mentally but couldn't find anyone willing to hire someone part time in my field of work. I have too much fatigue and chemo brain to work full time. I finally found someone willing to be flexible and am excited for that!!! But... lately I've been having headaches and nausea and am trying not to get worried...

  • lw422
    lw422 Member Posts: 1,404
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    Hey there, Blue. It's so nice to hear from you. The LE is annoying but I can deal; I already had my pity party and then my big-ass tantrum... neither of which did any good.

    Well, it certainly blows that you lost your job. Glad to hear that you found another place that will allow flexible hours.

    So sorry to hear that you're having those headaches and nausea. I generally have allergies and sinus headaches this time of year; do you suppose it could be something similar? The best thing to do is contact your MO and get things checked out. I hope you'll keep us in the loop and let us know what you find out. I'll be thinking of you and wish you the best, my friend. Take care.

  • mara51506
    mara51506 Member Posts: 6,199
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    Blue, I agree. There are many non cancer reasons you may have headache and nausea. If the nausea is mostly in the morning and improves, definitely let MO know the issues and ask for testing. Also, if the symptoms have lasted two weeks or longer, they should most definitely be checked out. It can be hard not to feel like you are jumping the gun, but better to find out if there is a cancer issue or not. In your pocket giving moral support until you know for sure.

  • blue22
    blue22 Member Posts: 172
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    Thanks Mara!

    I contacted my medical team and will see what they say. The headaches are not bad, but this consistency is not something I've ever had before that I can remember.

    LW - sinus headache is a good idea, but I don't really have other sinus symptoms right now.

    I'm hoping it is just Verzenio. Don't you love the marketing for those types of drugs? I see ads on my computer sometimes... and the people look so happy... I'm going to just start calling it cookie dough ice cream. If I eat enough of that, I'm likely to get diarrhea and nausea and possibly even a headache too, but cookie dough ice cream sounds more appealing.


  • traveltext
    traveltext Member Posts: 1,053
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    Well, pretty chuffed to be chosen as a Dr Love Research Foundation Ambassador for the month when raising awareness that breast cancer is a genderless disease is one of my missions.

    https://drsusanloveresearch.org/rod-ritchie/

  • mara51506
    mara51506 Member Posts: 6,199
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    I am glad you were chosen to do this, it is so important that although BC is largely a female disease, men can and do get it too and more research into male BC is most definitely needed to find out if treatment needs to be handled differently from male to female. When ads promoting cancer awareness are done for BC, we need to hear from or about the men personally affected. I know you are a big voice and a huge help to other men, thank you TT.

  • mamacure
    mamacure Member Posts: 256
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    hello everyone, good to hear from you all. Thanks Mara & TT, enjoyed that interview, especially the part about “living with cancer”. Great to get to know Mara better. LW, sorry to hear about LE. I am still wearing my sleeves round the clock. Older ones more comfortable since they are more stretched out. I did meet someone who said they stopped wearing the sleeves after about 5 years and doing ok. That was great to hear. I am doing self massaging and keeping it on top of a pillow at night as much as possible. My trouble area is around the middle of the arm.

    Becky, I need to research the UPenn clinical trial!

    Take care everyone!

  • lw422
    lw422 Member Posts: 1,404
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    I'm so bummed today. I got a letter from Dr. Naoto Ueno, my oncologist who is the Director of the IBC Clinic at MD Anderson. He will be leaving MDA in December to accept a position as Director at the University of Hawaii Medical Center. I feel like a boat that has suddenly lost it's mooring and is adrift in stormy seas; what will I do without him. He is such a wonderful doctor and was always a positive and uplifting individual; he saved my life and I will always be grateful.

    Sucks for me; a wonderful step up for Dr. Ueno.

  • mara51506
    mara51506 Member Posts: 6,199
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    lw422, I am sorry your MO has left that helped you out so much. If you should see another, may they be as effective and kind as your former MO.

  • lw422
    lw422 Member Posts: 1,404
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    Thanks Mara. I was "lucky" to have him as my doctor, though I'd rather not have had IBC!! I truly wish him well but I'm going to miss him. Thankfully I am not in active treatment any longer and I hope that will remain to be true.

    For anyone who might be interested, there was an IBC segment on Good Morning America earlier this month and "my" doctor Ueno was featured on the piece. https://www.goodmorningamerica.com/wellness/video/inflammatory-breast-cancer-survivor-shares-journey-recovery-91157623?fbclid=IwAR0oQwRrRuj4fCYgi6LPLnligyQ7eFhfU0oFTzxs62-2HX3YnWmLyOHpfqU

  • mamacure
    mamacure Member Posts: 256
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    I saw that GMA segment, didn’t know that was your Oncologist LW!

  • lw422
    lw422 Member Posts: 1,404
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    Hey Mamacure! How are you? Yep, that's my MO, Dr. Naoto Ueno. I was extremely lucky to live close enough to MD Anderson and be treated by the specialists in their IBC Clinic. I hate to lose him but I wish him well; he's THE BEST.

  • blue22
    blue22 Member Posts: 172
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    Hi LW,

    I feel for you. I have joked that my MO is the only reason keeping me living where I do with the insane cost of living. It is a bit of an exaggeration, but she is a big reason to stay nearby.

    Is your MO going to continue working on IBC?

  • lw422
    lw422 Member Posts: 1,404
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    Hi, Blue! Thanks; I'm bummed for me but happy for Dr. Ueno. As I understand it, he will be the Director of the University of Hawaii Medical Center, and I'm not sure if he will continue to practice or if he will be dedicated to administration and research. I know he is very research-oriented and has been during his entire career. There are many capable doctors at MDA so I'm sure I'll be in good hands, but I trust and admire him so very much, and in my mind, he saved my life. I'm a little apprehensive about a new MO and I hope I get to see Dr. Ueno one more time in November.

    How are you these days? Are you still having the headaches and nausea? I hope you're feeling much better. Take care and keep in touch.

  • blue22
    blue22 Member Posts: 172
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    Fun post by the moderators about IBC spreading to the brain... not sure who all saw that but it just makes me so frustrated.

    I didn't really get any traction reaching out to my MO about my headaches and nausea. I like my MO, and honestly I don't know if there is much else she could probably do. I had a brain MRI not that long ago for other reasons. I have fatigue and chemo brain that makes it impossible for me to function fully, which is also incredibly frustrating. It is getting worse on Verzenio, but I am scared to not keep taking it.

  • lw422
    lw422 Member Posts: 1,404
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    Hey Blue. That thread by the moderators absolutely INFURIATES me; it really hit me the wrong way. Way to make us already worried about a recurrence have one more thing to obsess about. TOTALLY TONE-DEAF AND UNCALLED FOR. I come here less and less, and if it weren't for a few of you "BC siblings" I'd never return.

    Are your headaches and nausea any better? I hope you're seeing some improvement. Hugs to you.

  • blue22
    blue22 Member Posts: 172
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    Hi LW!

    Thank you for asking. My nausea is still around. I'm managing it, but it is frustrating. With the fatigue, chemo brain, general lack of energy and nausea I really want to stop Verzenio... but then I come across posts like the recent one and think it would be foolish to stop. It just sucks how much it affects my quality of life. I never returned to normal after treatment, but Verzenio is sending me in the wrong direction regarding all the QOL issues.

  • mara51506
    mara51506 Member Posts: 6,199
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    I don't blame you about not wanting to read about IBC spread to the brain. I never did get to experience time off of treatment or scans so I can imagine that fear of recurrence would be comparable to fear some us Stage IV people have toward our scans.



  • lw422
    lw422 Member Posts: 1,404
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    Blue--I'm so sorry you're still having nausea. Is your doctor prescribing anything to help? As for returning to normal; I don't believe any of us ever return to our old normal lives. We just learn how to deal with whatever our "new" is as best we can. I feel pretty good physically but still have the zaps and tightness around my scar and axilla, plus a bit of lymphedema that I'm coming to grips with. But I'm still standing so there's that. Take care, bud.

    Mara--bless your heart; I know you understand the fear. Each of us has our plate full with the aftermath; it would just be nice if the moderators actually had a bit of understanding. All the complaints on that thread and it's still there and unchanged. They truly don't care about how they affect people. If it weren't for some of you, I'd never come back to this forum. Hope you're doing well these days.

  • mara51506
    mara51506 Member Posts: 6,199
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    I agree, if the comments are causing fear for some people, please put them elsewhere.

    As far as IBC and brain, it is not just IBC but all BC that can do that. I also want to encourage people who are fearful that there are good treatments if it happened and I am one of the long term survivors of BC to the brain. There are more and more of us, living normal lives except for treatment and scans periodically with good quality of life.
  • lw422
    lw422 Member Posts: 1,404
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    Mara--you are always so calm and kind. I hope you had a great birthday.

    I had my 3-month checkup today and saw Dr. Ueno for the last time. :crybaby: He will be leaving MDA and heading to Hawaii. He told me that I'm doing fine; nothing suspicious. I asked him about the higher recurrence rate for IBC within the first 2 years... I have never understood exactly when the timer starts on that 2 years. Is it when treatment started, when treatment ended, after the pathology report, after surgery, or diagnosis...?? He said it's from the original diagnosis and y'all... I was diagnosed 2 YEARS AGO NEXT MONTH... woooohoooo!!!! Of course that doesn't mean anything in the grand scheme of things. But somehow it comforts me a little. I'll take it!! We get so many double-doses of FEAR with this stinkin' diagnosis.


    I hope all the IBCers are doing well and thriving. Check in when you can and let us know how you are.