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

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  • traveltext
    traveltext Member Posts: 1,053
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    Welcome alpha 1. As you'll no doubt discover from the Stage IV topics, lung mets are very treatable these days. I have a friend who has been two years on treatment and travels, cycles, etc as though nothing has changed. He's an inspiration to me, for sure. Best not to have any preconceived notions about treatment and just go for the best advice and treatment possible. Keep us posted here.

    Hydranne, really good to hear that you are going well despite all the foibles and inconveniences of treatment.

    I've been distracted on another BCO topic where people are worried about the ads appearing on BCO and other privacy issues. I'm about the only one who doesn't care too much and spend my time trying to educate those who don't understand web site publishing in the modern era. If anyone is interested, check the topic HERE.

    Plus, there's some new research on IBC that has been published HERE.



  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hydranne, I feel really good, two cycles of gem/carbo under my belt and getting ready for some radiation to my spine.

    Traveltext, I spent about 45 minutes reading through that other thread and started to get involved but decided that I didn't care enough to do so, as it would likely fall on deaf paranoid ears...

    To the newcomers, welcome and I hope you find information and friendship here.

    I have been on a bit of a board break but can't help checking in here once in a while!

    Great weather does slow down the old discussion forums, eh?

  • meadow
    meadow Member Posts: 998
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    hydranne Thank you so much, you made my day.

    talpha Welcome! I'm sorry about your mets, but as Traveltext said, don't give up, you can fight this. And we will help you!

    hello to Purple, and everyone!

  • Valstim52
    Valstim52 Member Posts: 833
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    Talpha, welcome. So sorry you have to be here.

    Hello to all. My recovery hit a snag as I did too much and had some serious pain. It didn't stop them from mapping me and planning my radiation to start on Tuesday. My RO was really thrilled about my chemo response and surgery pathology. To be fair when I met him the beginning of this treatment plan, I sort of checked out when he was speaking. Because summer seemed so far off, back in Dec/Jan. How time goes when you are suffering.

    Meadow, can I say again, love your new avatar. Hey Hydranne ;) Hey there Purple

    Traveltext, you never fail to educate me. lol. I can't believe folks have the energy for complaining about advertisements etc. whew. I can't say I blame them because I can get on some pretty strong tangents myself

  • traveltext
    traveltext Member Posts: 1,053
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    Purple and Valstim, there are people who get a bee in their bonnet and I'm sympathetic to all opinions, but I feel that BCO is so valuable that why get upset about a few ads appearing on the site? And as far as privacy goes, well I want my details out there because I know we all need as much information as possible when we're helping each other. It's funny how these matters, perhaps important once, fade into the background when you are coping with treatment and all the other BC issues.


  • Valstim52
    Valstim52 Member Posts: 833
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    Well said Traveltext. It's because of the information being out there, that we can get the support we need.

  • MichelleABCs
    MichelleABCs Member Posts: 1
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    Still here stage iv since Dec 2009. Triple +

  • meadow
    meadow Member Posts: 998
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    Thank you for posting Michelle, we love hearing this!

  • Valstim52
    Valstim52 Member Posts: 833
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    Thanks Michelle for posting.

  • MoreShoes
    MoreShoes Member Posts: 179
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    Meadow, you look great!

    Hydranne, hi :-) I was wondering how you're doing. Busy with life, that's good.

    Purple, how is the gem/carbo working? Do you have any side effects? I found it "easier" compared to the FEC treatment.

    Valstim, I'll be behind you in rads. I start on July 6th. I was tired of everything and didn't want to do it. But the words of Traveltext : "cancer is out to get you, you have to do everything" and the words of my RT: "we are not done with treatment yet" made me change my mind. The rads will be 2 hours away from where I live, great!



  • Cathytoo
    Cathytoo Member Posts: 394
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    NEED YOUR ADVICE OR PERSONAL EXPERIENCE!....I have a new worry. Had my first mammogram since my lumpectomy. The radiologist said "Oh, I see something!" After I picked myself off the floor, I asked for a written report. The report reads "complex cystic lesion measuring 1 1/2". Most likely benign as a result of surgical changes. Six month follow-up needed." My primary doctor says this is a common finding after surgery. So...what do you women think? Have any of you been given such finding?

  • Valstim52
    Valstim52 Member Posts: 833
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    Cathytoo, I don't have personal experience with this, but would want at least my surgeon to weigh in on it if possible?

    I have heard of small things that either develop or move around after surgery.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hello all!

    MoreShoes thanks for asking, the gem/carbo is definitely not as bad as FEC! The first two rounds were as easy as I can imagine, and the third one is somehow kicking my ass though. I have had a rough week, with fatigue and just general malaise. Part of my problem is my thyroid, I think. I was having hyperthyroidism, and now it has swung to hypothyroidism and I am so tired and grouchy. I go see the endocrinologist tomorrow so we'll see what she wants to do.

    I haven't been on here a lot, so much going on, somewhat down about everything (scans seem to show that gem/carbo isn't really working) and just haven't had the energy to even talk about it. I start spine radiation Tuesday and we will discuss breast radiation to begin possibly after that. Just a little sad and scared, nothing works, disease spreading.


  • traveltext
    traveltext Member Posts: 1,053
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    Purple, I can see that this week is the anniversary of your diagnosis and I'm sorry that you've had such a dreadful year.

    Try to concentrate on each phase your treatment, and don't feel you have to post here until you want some help or you feel like returning. You've been through so much, yet have given so much to others here, and I wish you well.


  • MoreShoes
    MoreShoes Member Posts: 179
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    Purple, it sucks! {{{Big HUGS}}}

  • Valstim52
    Valstim52 Member Posts: 833
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    Sending gentle hugs your way Purple.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Thank you, all. It was a tough week. I had my first spine radiation today, so far not a big deal. Just resting a bit. You guys mean a lot to me, just so you know. I could not do this without your help.

  • MoreShoes
    MoreShoes Member Posts: 179
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    Purple, we're here for you. I keep on praying that the rads, chemo, whatever else help to put cancer to remission.

  • shycat
    shycat Member Posts: 45
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    I had a PETscan on Monday and just learned it was all clear again.  My RO said "Congratulations, you're cancer-free."  Lovely words to hear at any stage, but especially being stage IIIC.  Life is good.  Happy

  • Milwmama
    Milwmama Member Posts: 84
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    Sitting in my LAST chemo!!!

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Congratulations Shycat and Milwmama!!!!

  • traveltext
    traveltext Member Posts: 1,053
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    Good news Shycat, NED is is the best stage of all! How have you handled chemo Milwmama, and when does surgery happen?


  • Valstim52
    Valstim52 Member Posts: 833
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    Congrats Shycat and Milwmamma. Hooray for you.

  • LindsayTNIBC
    LindsayTNIBC Member Posts: 4
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    Hello everyone- I am not sure what I am doing... This is my first post! Just found this website and very excited. Have been trying to find someone to connect with. I am 28 years old and was diagnosed triple negative IBC in April. I've completed 4 rounds of dense dose AC chemo and am now on week 3 out of 12 of weekly Taxol. I am stage 3 - lymph node involvement. I am single and no kids. It has been a scary and difficult couple of months.

  • traveltext
    traveltext Member Posts: 1,053
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    Welcome LindsayTNIB, you've come to the right place for advice, support and fellowship, since there's a good mix here of people going through treatment and those who are post treatment. You might like to consider putting your diagnosis and treatment details into your profile so that we better understand your medical history. How did you handle the AC chemo and how are you going on Taxol? Some people find one or the other tougher, others breeze through due to the good supplementary meds available these days. Most, if not all of us, have done neo-adjuvant treatment here, so we can prep you for the treatment stages to come.


  • Valstim52
    Valstim52 Member Posts: 833
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    Welcome LindseyTNIBC, sorry you have to be here, but this is a great group for support.

  • LindsayTNIBC
    LindsayTNIBC Member Posts: 4
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    Thank you everyone for the warm welcome and comments! Traveltext- I believe my diagnosis and info is now visible! I had some trouble with the AC- had to go in for fluid IVs after the Neulasta shot almost every time. Lots of bone pain and nausea- but made it through. Also experienced a lot of emotions and dr put me on anti anxiety meds to take around treatments. Taxol has been easy peasy so far compared to the AC! Not many side affect although I did catch a cold over the weekend. I have not been wearing masks in public but have Been trying to stay germ free otherwise. Was it common for you guys to catch colds easily the further you got into treatment? Should I be wearing a mask? Hoping this cold was a one time thing

  • bride
    bride Member Posts: 121
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    Hello Meadow, Kicks, and Hydranne and everyone else!

    I'm finally back as my DP is doing well after 5 hospitalizations since January. I'm doing pretty well myself: survived my first shot of Prolia and have finally titrated on to a supposedly effective dose of Nuerontin which seems to have no effect.

    For all of those who are in the throes of treatment -- we mostly all had variants of the same general treatment plan and we all had different responses to it. I did 6 months of chemo, then surgery, then radiation. My biggest problems were that I had nonstop diarrhea during chemo (but no stomach stuff), my sodium tanked and put me in the hospital, and I still have major problems with neuropathy and back pain and range of motion. Everyone's journey with IBC is unique but almost always there is someone here who can help and all of us can provide emotional support.

    I'm starting my second year of NED. And I've started leading a course at my local breast center that's basically a Welcome to Cancer, Here's Stuff to Help. Further, since my career was spent teaching history and critical theory, I've written essays on mourning and on how society uses external things like hair to define woman (and how we internalize this) and how the meaning of signs like hair have changed over time and space. Sorry Traveltext, I can't even imagine how complex it is to be a man with breast cancer.

    That's all of my news, I hope to be back on the boards regularly again.

    With hugs and good wishes to all,

    bride

  • MoreShoes
    MoreShoes Member Posts: 179
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    Bride, I'd really like to ready your essays if they're somewhere online available.

    Hydranne, thank you for asking. I've started rads. 18 regular rads and 5 times hyperthermia. That is just plain awful. They've put foil around me, hundreds thermometers, put the temperature up to 43C (109.4F) and let me bake for an hour. I really felt like Christmas turkey. I hope that at least it helps.

    Shycat, that's wonderful news.

    Milwmama, phew! Now take time to rest.

    Lindsay, welcome. It sucks, I know. I didn't get a cold during chemo. I wasn't wearing a mask but was avoiding kissing and handshakes.

    Purple, you're still in my prayers.

  • traveltext
    traveltext Member Posts: 1,053
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    I'd also like to ready your essays Bride.