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

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited August 2016

    Yes, rads right on top of surgery is brutal, but it is also very effective for those with IBC. And handling the mental aspect to this disease is just as important as dealing with all the other shit. You certainly deserve your vacation Valstim, so enjoy it and try to clear your mind.

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2016

    Val, yes! I am so happy for you to be finished with treatment. Here we ring a bell when finished, did you?

    Mil, I agree with Traveltext, don't sweat the tumors, as they were removed with surgery. This is why the 1, 2, 3 punch of chemo, surgery, rads, is so effective for IBC. Glad you are healing up, and doing so well.

    Lindsay, hugs to you

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2016

    YAY, Val! Way to go! Enjoy your vacay and enjoy the view of active treatment in your rear-view mirror.

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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Valstim52,

    Well done you on completing your treatment. I will hopefully get my radiotherapy planning done this week. Postponed last week cause of wound drainage.

    Enjoy your well earned vacation. It's a gruelling treatment plan but so pleased you are through it. X

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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited August 2016

    yes, I had trouble with neuropathy during treatment with A.c. and Taxol. I stopped mid point , had left mastectomy return to finish treatment. A total of 12 does . The brief break helped. I think it was the treatment to aid circulation to my legs in the hosp. That help.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited August 2016

    Need help? Is it possible to have lymphedema in your leg area? I was tested at the hospital for a possible blood clot, and they said it's lymphadema and have referred me to a lymphadema specialist? I thought it only occured in your arm or trunk area?

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited August 2016

    Lymphadema in a leg with all its lymph nodes sounds unlikely. The good thing about going to a LE specialist is that you get measurements taken as a benchmark, plus massage and an exercise plan. Keep us posted.


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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited August 2016

    It is more concentrated around my knee, I had a break in the knee cap 3 years ago. So I guess they want to rule out everything. After LE specialists I'll see my orthopedic doctor. It never ends.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited August 2016

    Don't sweat the small stuff Valstim, you've finished treatment, you're healing, and the vaycay is looming.


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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited August 2016

    HI Hydranne

    No lymph nodes removed in my groin or legs, just the left breast area. I could be my bum knee, who knows? I see the specialist tomorrow for more info. And ofcourse it's going down, or at least to me it is. Sheesh.

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2016

    (((hydranne)))

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2016

    Sharing with you all my joy today, it is my 3 year cancerversary, and I am, thankful to be NED today! Yay! I feel good. Thankful for this milestone in my recovery to lifelong good health. THANK YOU all for being a huge part of that recovery. I know you "get" it. Love you all.

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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Delighted to hear your good news Meadow, celebrate 3 years free, here's to many more

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited August 2016

    Hydranne, You are the font of all information today :) Sorry about your meltdowns. Are the eight treatments the end for you? PurpleM's great avatar always gives me a big smile, and I know she'd be glad that her post is helping so many.

    Meadow, Congrats. Keep coming back with good news, that sustains us!

    MiniM, I too had rads delayed because of wound drainage issues, that drain bag must be the worst part of the whole business. I'd forget I had it on and it was forever popping the tube. Holy moly. Anyway, good luck with the rads.


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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited August 2016

    Sure love your purple minion. I agree about inflammory bc people are a bit different. It looks like a few of us are also triple neg. Off to my second six month Check up. I have no experience with swelling but I feel for you guys.

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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited August 2016

    Hur Ray Valstin52, It's a great milestone.

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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited August 2016

    Hur Ray Valstin52, It's a great milestone. Enjoy your vacation.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited August 2016

    Meadow, congratulations! That's wonderful :-)

    Hydranne, just 8 more to go. You're almost there.

    I've finished the rads, the hyperthermia was the worst part. Now I'm very tired and burned. The chest area looks like a battlefield, starts peeling and hurts. I keep on putting all kind of creams, that helps. Next week we're going for a short vacation, so that we get a little bit the vacation feeling. I know I shouldn't complain but after almost 10 long and difficult months, I had enough. Monday I see the psychologist but maybe you can understand me. I want to cry and nothing is coming out.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2016

    MoreShoes, we get it. Why shouldn't you complain? You have been on a battlefield, fighting for your life, for 10 long months.

    We will be your raft for a while. Climb on top and float, gentle and easy, we will support you.

    Sending you hugs.

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  • LindsayTNIBC
    LindsayTNIBC Member Posts: 4
    edited August 2016

    Hydranne- thanks for your response. Am doing okay. After a second opinion, all docs decided to move forward with surgery ASAP since I was not responding to chemo. Figured it would be best to try to get it out before it metastasized. Was given 3 days notice before surgery. My surgery lasted almost 7 hours last Thursday. Plastic surgeon had to take chunk from my back to close the large wound up front. I have 3 drains and lots of pain still. Will get path reports at followup next Monday

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited August 2016

    Welcome to this group JCP. We might be different, but different in a nice way :)

    MoreShoes, 10 months is long enough, and the treatment we get does put your head in a weird space. I'm sure you'll get your cry back. For me a good cry equals a good laugh, any day. For sure and the rads SEs will simmer down. A vacation will be good but do get back to the raft when it suits you.

    Lindsay, Glad you got your second opinion and the surgery completed, that must be a relief. Monitor those drains well and I hope you are able to rest up plenty. Finger's crossed for you on the paths.


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Hi, playing the waiting game again. Radiotherapy planning postponed cause of possible skin mets. Had biopsy taken.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited August 2016

    That's very unusual MM, how did the alleged mets present?


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    A rash near the mastectomy site, at first got steroid cream as docs thought it innocuous but it changed in appearance and is now raised, papular so major cause for concern hence biopsy.


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    A rash near the mastectomy site, at first got steroid cream as docs thought it innocuous but it changed in appearance and is now raised, papular so major cause for concern hence biopsy.


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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2016

    Well, darn! Fingers crossed, prayers for benign results. Keep us posted.

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  • Meadow
    Meadow Member Posts: 2,007
    edited August 2016

    mini, reading your bio, did you have a double mastectomy? Oh yes, I read it again, sorry I am slow some times.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited August 2016

    Minimoocher, lots of prayers! Remember to breath while you're waiting for the results.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited August 2016

    Minni sending virtual hugs and hoping for good results. Hi Hydranne, Meadow...(((hugs)))

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited August 2016

    Just out of hospital. Had a mild stroke. DD is typing for me.

    I had a terrible pain in my lower left arm, then started slurring my speech. Dh called 911 and it was a blur. No high blood pressure or heart problems, so it was a surprise. A vein blew out in that arm, and that's why I had the pain, it was on my masectomy side. they had to make sure there were no tumors pressing on something causing the symptoms. though scary at least it ruled out cancer.

    I feel a little weak on that left side, and will have therapy. Ugh.

    Good news is they did all kinds of scans mri's and no tumors anywhere. Brain, bones, spine, abdomen,. chest all clear. Odd how a stroke is good news vs cancer

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