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

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  • meadow
    meadow Member Posts: 998
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    Oh Purple, I was thinking about you, thank you for the update. How is the emend working for your nausea? I am so sorry you are going through this, and I hope you are feeling ok. Stay strong! Sending you a warrior's prayer for strength.

  • traveltext
    traveltext Member Posts: 1,053
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    Purple, this is interesting new research on the treatment of TNs, so check it out: http://oncologynews.com.au/ucsf-team-finds-new-approaches-to-eradicate-aggressive-breast-cancers/


  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hydranne, THANK YOU for posting your great news!!! We all need this and I am so very pleased for you. I remember last year you were having a very hard time and nothing was working and you were very sad. This is a wonderful change and I am so happy for you!!!!

  • Valstim52
    Valstim52 Member Posts: 833
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    Hydranne, were you stage iv right from the start?


  • Valstim52
    Valstim52 Member Posts: 833
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    Wow, Hydranne, how far you have come and such a source of inspiration for those of us just starting this journey with such a sneaky kind of BC.

  • Milwmama
    Milwmama Member Posts: 84
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    Ugh! Missed chemo again and now have to get blood tomorrow, two bags!! But I feel fine. Very, very frustrated. Was down to five treatments and looking forward to be lower and now I am stuck at 5 left. Never had transfusion before, and so close to the end. :,(

    Really wish this was over.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Milwmama,

    It happens to the best of us! The blood will fix you up and you'll be back on track in no time.

    Traveltext,

    Thanks for the link, it will be interesting to see if this research can go from mice to humans!

  • Milwmama
    Milwmama Member Posts: 84
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    It's nice to be able to come here and read all the good news such as Hydranne when feeling down.

    Thanks Purple too. First time having to get blood so a little scary, but sitting here for two bags and four hours, makes it less scary now, just lllooooonnnnnnggggg. And on a nice Friday, boo.


  • meadow
    meadow Member Posts: 998
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    Milwmama, rats! So sorry, hang in there!

    Hydranne, so very happy and just grinning for your good news!

  • MoreShoes
    MoreShoes Member Posts: 179
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    Hey Milwmama and Purple, how are you doing? The blood transfusion defintely helps. I was feeling like a vampire but the second time around I asked for it myself. How is the Carbo combo going?

    Meadow, I've been meaning to say how great that you lost all this weight. I've stopped snacking in the envening, and started eating green salades for lunch. I've lost 2 kilos already.

  • Valstim52
    Valstim52 Member Posts: 833
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    Hello All


    Working up some anxiety now about surgery tomorrow. Done some prep, but nothing can prep me for the emotional things.

  • Milwmama
    Milwmama Member Posts: 84
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    Moeshoes (I love that, I have a shoe problem myself) - Gotta say I am feeling pretty good. Have not had chemo in 1.5 weeks and the blood. Went for a motorcycle ride with the hubby yesterday and almost felt normal! Minus the usual beer :(

    Have one more Carbo either this Thursday or next and will be very glad when it's over, it is super hard on me. 5 more total and I get some relief then move to the next step.

    Have a busy weekend ahead and hoping for the best with new blood. Hoping it calms down some side effects while company is in town for the long weekend.

    And.....it's 80 and sunny today!! Finally Spring has come to Wisconsin!!

    Fresh food and a few more pounds and I hope to be at what will be my new normal. Lost ALOT of weight since the beginning. Now the trick is to keep it off, lol.

    Hope everyone is doing well.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Moreshoes,

    I am doing OK. I have had a LOT of MRIs lately and I have many many many bone mets but the brain MRI is clear and the neuro oncology NP I saw doesn't *think* I have leptomeningeal disease. We did a spinal tap (totally unpleasant) today and that should tell more, and the Neuro onc doctor will also review everything...

  • meadow
    meadow Member Posts: 998
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    Moreshoes Thank you so much for the encouragement!

    Val, in your pocket for your surgery, thinking of you

    Purple, I am thankful for the all clear on the brain mets, I am sending you hugs for strength and a fighter spirit

    My love to all

  • bride
    bride Member Posts: 121
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    Hi all,

    I've been off the board for months -- I've sorely missed you all. But my DP has only been out of the hospital for two weeks since last December. She's doing quite well finally and I now have the time to rejoin the boards -- something I need.

    Um, what happened to "this ain't Facebook?"

    I'm getting my dreaded first dose of Prolia tomorrow. I'm trying to catch up and hopefully will reintegrate myself into the boards.

    Happy to be back,

    bride

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Bride!!!! So glad to see you! It 'aint facebook went away because Bon left the boards entirely (deleted everything and she had started that thread) after some sort of dust up on the stage IV boards. Unfortunate but we can rebuild it!

  • traveltext
    traveltext Member Posts: 1,053
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    Welcome back bride. Tell us about Prolia.


  • meadow
    meadow Member Posts: 998
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    Bride, just a bright spot popping in on us. You were missed. Hoping the DP is feeling better, stronger every day. Hugs to you

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Update to the update: CSF: negative for malignancy but elevated protein (which worries ME). They don't want to do another spinal tap right now, just get on with the rest of it (systemic chemo and radiation to some bones). So, "not bad news" is better than bad news, and I like that, but I am still worried because they told me and I've read that spinal taps are only 30% likely to capture malignant cells. So I don't feel that this is definitive. But, neuro onc says no more testing unless I develop symptoms so that's where it is.


  • Milwmama
    Milwmama Member Posts: 84
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    Ugh. No chemo, AGAIN! Two weeks in a row. Even after blood last week. Frustrating. I'm now looking at surgery sometime at the end of July, beginning of August. Was "planning" on going back to work Sept 1st when school starts......maybe not. I am getting another breast MRI Tuesday. Will be nice to SEE what's up.

    Silver lining is I won't be wiped out this long weekend. Nerdy

    But, I just want to get this done!!!

    PM-your right. Not so bad news is way better than bad news :)

  • traveltext
    traveltext Member Posts: 1,053
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    Inflammatory breast cancer patient empowers herself with research. Read about it HERE.


  • Valstim52
    Valstim52 Member Posts: 833
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    Hi Everyone

    Just checking in. Surgery went well, no new growths, he said he got all he could see, and it went better than expected.BS says looks iike chemo really did it's job.

    One day at a time. Rads are next.

  • traveltext
    traveltext Member Posts: 1,053
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    Excellent news V52. You've done the hard yards, since most people find rads a walk in the park compared to chemo and surgery.


  • Valstim52
    Valstim52 Member Posts: 833
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    Thanks so much Traveltext. I was thinking how good it feels to have it off and out.


  • meadow
    meadow Member Posts: 998
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    So glad it went well!

  • MoreShoes
    MoreShoes Member Posts: 179
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    Hydranne, I still miss rossileo and notdoneyet (i don't remember the new name she used). Enjoy the long weekend. It's normal weekend over here, I plan to go for half an hour to a friend's birthday party. I actually put on the temporary foam prostheses yesterday and felt kinda normal. But I have to take care and rest enough cause I think I'm pushing myself. You're already back to work?! How is that possible?


  • MoreShoes
    MoreShoes Member Posts: 179
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    Nutrition question: I'm determined to change the way I eat, even more veggies and fruits. BUT the problem is when I check online for information I get so much contradiction. Walnuts and nuts are good for you, but they contain too much copper and copper is not good for TNBC. Folic acid is good but also not so so good. You get the picture.

    Is there a site/book/link that you can suggest? I'm getting furstrated trying to find the right information.

  • roedyelinda
    roedyelinda Member Posts: 1
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    Hello there! I'm new to the boards, my name is Kay. I'm going to be 36 this week and live on the border of MN and WI. I have two kids, ages 7 and 15, two dumb beagles, and a cat that thinks she's a lion. I also happen to be partnered up with a wonderful man who has been by my side for 5 1/2 years.

    I found a tender spot in my left breast earlier this year, thought it was cycle related tenderness, but then it didn't go away and a lump showed up.

    I saw my OB's NP on 4/27/16, had a mammogram with U/S and biopsy on 5/4/16. They were convinced it was an abscess because of my age and how fast it had grown. I got the phone call on 5/6/16 that "Invasive Ductal Carcinoma" was found in my biopsy.

    I had a consult with a surgeon on 5/9/16, and he was immediately concerned about the appearance of my breast- orange peel and getting red. Then he explained the rest of my diagnosis. "Inflammatory", "Triple Negative". He consulted the Director of Oncology and I had a PET scan on 5/11/16. The surgeon called me on 5/13/16 to let me know that the cancer was localized to the left breast and a few of the nearest lymph nodes. Early Stage 3. HOORAY! After worrying that they were going to tell me that my PET scan had lit up like the 4th of July, I was relieved to know that it hadn't spread too far. I have a good shot at beating this.

    I met my Oncologist on 5/17/16 and things took off quickly. He explained what I am up against and laid out the plan. 4 rounds of AC, up to 12 of Taxol, then a brief rest to prepare for a double mastectomy. Then I will have radiation to make sure it's all gone. It looks like many women here are on the same protocol. My port was placed 5/20/16, I had my pre-chemo echocardiogram done on 5/23/16, CT on 5/25/16 looked good, and I had my first date with "The Red Devil" on 5/26/16.

    I got my Neulasta shot on 5/27 and broke out in hives, but Benadryl and steroids fixed me right up. So far, my side effects haven't been too bad. I stay on top of the nausea with the Zofran, I've only had to take the Compazine twice. I'm a bit more tired and get drained easier, but I can still be up and about. I just have a little nap here and there.

    I dyed my hair purple and blue. I figured that if it's going to fall out, I'm having fun with it first. When it starts coming out fast, I'll go all GI Jane and shear it off.

    I am encouraged that my tumor has already stopped hurting. I'm hoping that means that a few billion cancer cells died screaming deaths over the last few days. Fingers crossed!

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    roedyelinda, welcome, I am really glad you found us! I am also TN IBC, although I have mets to my bones so now have a different treatment protocol than you will have. I am glad to hear that you are tolerating the treatment so far, hang in there! This is a great place to ask questions and read up on info others have shared. If you FB there are a few good groups I can recommend there too, PM me if you want.

  • traveltext
    traveltext Member Posts: 1,053
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    Welcome roedyelinda. Sorry that you had to join us, but rest assured you are going down a well-trodden path trodden by the women here, and me as the lone man. Keep us posted on your treatment as it proceeds and we'll try to be of assistance should you need it.