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

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  • Geeper
    Geeper Member Posts: 91
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    Hi Mara thank you! I am happy Taxol is working and that I have had minimal SE's. My oncologist told me to start icing my hands on Monday. I hear this on the forum all the time, but it was weird to hear it coming from my oncologist.

    Hello Valstim, this is such great news! My IBC breast is looking good also, better than before. Sending you the best of wishes.


  • MoreShoes
    MoreShoes Member Posts: 179
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    Geeper, that's fantastic news. Are they still talking about operation?



  • MoreShoes
    MoreShoes Member Posts: 179
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    My story: I feel like a cancer veteran :-( This is the third time around that I have to deal with cancer. The mammogram 6 months before was clean and I was going on with my life. Last October I had an appointment with MO and told her that that morning I had noticed some kind of dimples around the nipple. As soon as she saw them, she sent me for a biopsy and I knew that it was bad.

    An 8cm IBC TN mass on the left breast, smt also on the right breast, a node in the right armpit and a node in the neck. I don't know what stage it is and I don't want to know. I started right away with Gem/ Carboplatine, last week it was the last one. In two weeks I get a CT scan and an MRI to see what's happening. They talk about double mastectomy and thermal therapy.

    I'm sick of being sick.

  • LMN
    LMN Member Posts: 1
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    Hi! I want to join this thread. I was diagnosed June 2015 with IBC.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hey! Welcome to the thread Shycat, Terri and LMN!

    Moreshoes, I am sorry you are doing this a third time but thank you so much for sharing your story and experiences with us. I am also triple negative so we're in this together as far as possible treatments.

    And yeah, being sick sucks. (which is another reason I love hearing from people who have come through the thick of it and are able to get on with life like Traveltext!)

  • Geeper
    Geeper Member Posts: 91
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    Hi Moreshoes, yes surgery once the tumors have shrunk more. I am hoping that the next 8 chemo rounds do the job. I just have to get back on track. I was eating so good and that went out window about two weeks ago. I have been slacking off. I also need to start Yoga.

    Hoping you have great results! Please don't lose hope.

  • Scwilly
    Scwilly Member Posts: 232
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    Hi Everyone

    I'm 2 1/2 years form dx of IBC in November 2013. I have finished all treatment, (7 months Chemo (ACT), UMX Surgery, Radiation, Second UMX its DIEPO reconstruction) and feel great.

    When I was first dx my world was thrown upside own and I was in such fear. I would have never been able to understand I could get through it and not feel so emotionally wrecked. But I did.

    I wanted to encourage everyone currently going through treatment. Time will pass and I wish all of you comfortable and successful treatment. I know I cannot guarantee success, but I want to give you hope. I am not out of the woods yet, as with TN the first five years are important. I no longer constantly think about my cancer and if I do its with a clear head.

    Hugs

    Sarah

    Hug

  • mara51506
    mara51506 Member Posts: 6,176
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    Thanks Sarah. I am getting to the point where I can sometimes go a day or two without thinking about it. I am still getting Herceptin and I am still deciding whether I want reconstruction or going flat but I do see the breast surgeon for a checkup since it has been a year since the mastectomy. We will see what I decide. I know I do not like being a "uniboober" and wear a lot of vests because I just don't like wearing prosthetics. Even the knitted knockers are a pain in the but. I am grateful to still be here and tolerating the Herceptin and every day I feel well is a gift. I do not plan too far in the future, live much more in what is going on now. No point trying to guess what I would do if it came back, spread or even if it did not come back. One thing at a time as I've learned. You sound like you have some good perspective.


  • Scwilly
    Scwilly Member Posts: 232
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    Mara51506: You are absolutely right, one step at a time. I was actually thinking this when I read your post. It was a gradual progress. I never likes my uniboob - but elected not to do a double MX when I had my first surgery, as I didn't want to have a larger surgery and so have the danger of delaying reconstruction.

    As a TN I had treatment envy when I finished radiation and really didn't like not having anything to prevent recurrence. Silly really. I hope your tolerance of Jerception continues.

    I had been waiting the time until reconstruction when I found a small lump, which ended up being DCIS in my right boob. I actually think the bump was a small cyst but had DCIS nearby as it was found by my BS on my 3 month follow up from a first clear biopsy. Funny thing, this really didnt seems big deal at all, I suppose it must have felt like a game of trumps, it seems nothing trumps IBC. So I had my recon a little earlier than my PS would normally do. I love the result, and two weeks ago had further surgery to get things even. Living in LA (I'm a UK expat) I have been saying that I now feel I am a proper local with my boob job.

    I think the time will come when thinking about it become a small part of life and when you do think about it it won't be in fear. I have accepted that its a risk, but an ever decreasing one. I remember reading a tread from someone who is dx Stage IV, show said that if you do get a reoccurrence, you won't want to have wasted those times of ignorance in fear. After dx al I wanted is to return to the normal risk of life. I don't go overboard on having a prevention routine, but have started to take Vitamin D after being recommended by my MO and also saw recently an article about nighttime fasting (where if you don't eat for 13 hours overnight then the body does a mini fast and its thought its a way to clear the body and rekick the imnmnune system - see Topic: Longer night fasting may drop BC recurrence risk btw: Im not an Alternative therapy fan - but this is where I found the topic) If anything - it will help me loose weight by cutting out late night snacking!

    Smile

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    I have a little bit of good news: for the first time since October I am stable. I am in a clinical trial and while there is little evidence at this point that I am getting better, there is evidence that over the last six weeks I have not gotten any worse. I'll take that!

  • mara51506
    mara51506 Member Posts: 6,176
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    I agree with the not going overboard on the prevention routine and I can see why it would be easy to fear being triple-neg. I also had extra fear being Her2+ always knowing it was an agressive one and being mixed with being an IBC was very scared. Now, gradually, I am just taking one step at a time and if I feel good I am glad. Hard to do but I tell myself to do it and if I think about it too much I just remind myself and try to move thoughts to other things or watch Star Wars if I can. That is my go-to happy place when I watch those movies and I can forget about things. You have a good perspective as I say. My honest belief on a personal level is that since I eat well, don't smoke, exercise etc that there is not too much I can do to prevent it and will just hope it does not happen again.


  • mara51506
    mara51506 Member Posts: 6,176
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    I am glad to hear that PurpleMinion, may your stability continue for a long, long time.

  • Scwilly
    Scwilly Member Posts: 232
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    Great news PurpleMinion. It much feel great to get these results and to also know that your TX is having effects.

    Heart


  • MoreShoes
    MoreShoes Member Posts: 179
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    Purpleminion, small victories, are also victories :-)) Hope it stays stable and even gets better.

  • Valstim52
    Valstim52 Member Posts: 833
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    So glad for you PurpleMinion.

  • meadow
    meadow Member Posts: 998
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    Hi to all, I was diagnosed in August of 2013. I am NED now, feeling good, staying positive. Yes, I do have issues...who doesn't! I know life is a blessing, complaining for too long isn't my nature. I have 2 grown sons in their twenties, and 2 granddaughters ages 5 and 10, who give me great joy. My husband, The Spouse, is a great support, just a great person really. So that is me! Thank you Purple for giving us this new gathering place.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    so glad to see you here Meadow

  • traveltext
    traveltext Member Posts: 1,053
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    Hey Hydranne, when you get time, can you update your signature details so we know your diagnosis and treatment history.



  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hydranne, that is so great that you are going to get some relief! I hope that surgery is as easy as pie and does great things for your quality of life. Whine away, that's what we are here for, if you can't whine to us, who can you whine to?

    As Traveltext mentioned, it would be good if you would go to your settings and make your diagnosis and treatments public so people can see what it is you are dealing with and comment back to you more intelligently :)

  • Valstim52
    Valstim52 Member Posts: 833
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    Hydranne

    You give us all hope. I'm so glad you are responding to treatment and getting an MX.

    Thanks again Purpleminion for starting this thread. Those of us new to this, need it so desparately.

  • shycat
    shycat Member Posts: 45
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    I'm celebrating today! We just heard that our offer on a house was accepted. Finally, single-level living and no more stairs, a lovely big kitchen that doesn't make me grumpy, a beautiful fenced backyard for the dogs to play in and a screened-in porch that will make the cats so happy. This is the house we'll grow old(er) in. For the moment, I'm ignoring the fact that this means several weeks of hard work packing up and then unpacking, so I can enjoy the buzz. The reality of moving will ruin that soon enough.

    Smile

  • mara51506
    mara51506 Member Posts: 6,176
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    That's wonderful shycat! Smile

    image

  • Valstim52
    Valstim52 Member Posts: 833
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    Congrats Shycat.

    Great news.

  • meadow
    meadow Member Posts: 998
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    Happy for you Shy cat!

  • shycat
    shycat Member Posts: 45
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    Thank you everyone!

    Smile

    Still grinning and so looking forward to one-level living. Stairs have been the exhausting bane of my existence for awhile, and it's not as if I'll be getting any younger or spryer.

  • MoreShoes
    MoreShoes Member Posts: 179
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    Congratulations shycat!!

  • MoreShoes
    MoreShoes Member Posts: 179
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    Hydranne, how are you doing? I'm curious why offering you MX in stage IV is rare.

    Purpleminion, do you know how's Rossileo/Anna is doing? I haven't seen her here yet.

  • MoreShoes
    MoreShoes Member Posts: 179
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    I don't know about the USA system, but I know about the Dutch medical system. You have to take care of yourself. The docs told me first to keep on doing the blood thinning ejections (I ignored them) and it turned out that my blood was so thin I needed a platelets' transfusion. Imagine if I had followed their advice, I'd be bleeding internally. I got an allergic reaction and gave me a pill which had me sleeping for 2 days. Hopefully I'll be able to enjoy my "good week" before the scans and the waiting.

  • mara51506
    mara51506 Member Posts: 6,176
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    Confirmation of what Hydranne said if interested. This is from November 2015. http://www.uptodate.com/contents/role-of-breast-surgery-for-stage-iv-breast-cancer

  • mara51506
    mara51506 Member Posts: 6,176
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    Great minds think alike I would say! No problem. Had found it earlier but wanted to let you answer MoreShoes first before posting anything since I thought it was better for you to answer. Since you were the one asked. Winking