IBC ladies please,how are we all doing!

13

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  • Meadow
    Meadow Member Posts: 2,007
    edited December 2014

    juane, I am thankful you feel good, and Merry Christmas to you, and hoping for a strong 2015.

    Simimom, 10 years, wonderful!

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  • Jmo06
    Jmo06 Member Posts: 159
    edited December 2014

    hi ladies curious anyone here on lifelong infusions of herceptin/perjeta

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  • Jujube43
    Jujube43 Member Posts: 178
    edited December 2014

    No, but I'm HER2 -, so as far as I know not eligible for either.


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  • Jmo06
    Jmo06 Member Posts: 159
    edited December 2014

    oh wow thanks bon_ my mom is the one actually on it, she just finished chemo and is now on to her lifelong infusion she has been getting rashes on her face but other than that really no side effect

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  • kjsimpson
    kjsimpson Member Posts: 445
    edited December 2014


    Jmo06,
    The rashes on her face could be from hair follicles starting to return.

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  • bride
    bride Member Posts: 382
    edited December 2014

    Hey Bonnie,

    Can you point me to any info on Herceptin infusions forever? I've been getting them for just over a year, I kept having them scheduled, but I had not thought to ask about how long I'd get them.

    Thanks, my friend,

    bride

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  • Meadow
    Meadow Member Posts: 2,007
    edited January 2015

    Thank you Bon!


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  • Teakie88
    Teakie88 Member Posts: 226
    edited January 2015

    Jmo06: I am on lifelong infusions of Herceptin and Perjeta. Ann

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  • shycat
    shycat Member Posts: 76
    edited June 2015

    I'm celebrating tonight! 

    I had the first of 5 annual post-treatment PETscans last Friday and today received the coveted NED results along with a celebratory high-five from my RO.  Smile

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  • Sonjat
    Sonjat Member Posts: 19
    edited July 2015

    Sherlocked, Thank you so much for the flash-forward! I'll be at one year post diagnosis July 18, and I've been very fortunate to be PCR after surgery. Still doing radiation and will be finishing up Herceptin. It's good to hear that you came out of the energy black hole. On occasion I get down and have a pity party for about a day because I'm so tired of being tired! Congrats on your renewed energy and health. It was great to read your post :)

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  • mjmontana
    mjmontana Member Posts: 3
    edited September 2015

    Hello all,

    I just got diagnosed a couple of weeks ago with IBC, ER+/PR+, HER2-, and pretty darn scared. Waiting to get my port (friday) and MUGA, PET & MRI, then will start chemo (AC dense dose, 4x every other week, then Taxol weekly for 12 weeks). Started taking turkey tail mushroom supplements, eating everything with turmeric, drinking green tea, and got my med mj card. Anyone have comments about supplements, foods, exercise? Hugs to all.

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  • Meadow
    Meadow Member Posts: 2,007
    edited September 2015

    Mj, Nice to meet you. I am so glad you found us here on BCO!. I like Bon, did not alter my diet to include antioxident rich foods, as my Onc said not to do so until after treatment. He said he had read literature where the antioxidents strengthen both healthy cells AND cancer cells, so I waited until after treatment. I did like Bon said, I ate what tasted good, kept protein up, gained about 8 pounds which didn't make me happy, but I learned most people on chemo gain weight, due in part to the fantastic anti nausea drugs, and the steroids. So be kind to yourself as you go thru treatment, you can do this, you can fight and regain your health. Good health can be yours again, so do not be discouraged. Hugs to you!

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  • Sloan15
    Sloan15 Member Posts: 896
    edited September 2015


    For those of you taking Turkey Tail capsules, how many do you take a day?

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  • mjmontana
    mjmontana Member Posts: 3
    edited September 2015

    Sloan 15, I take about 6 or 7 turkey tail capsules (1 mg, from fungiperfecti) though Idid read somewhere about someone who took 9 a day. Haven't started chemo yet; my onco isn't crazy about supplements, so I'm not sure what I'll do.

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  • bride
    bride Member Posts: 382
    edited September 2015

    Mj,

    I'm sad that you have had to join us. Please ask anything, rant on anything, and please, please let us know how you're doing.

    Bon is absolutely right about starting your own thread if you want. When I was DXed at the end of 2013, I started my own thread and the support (both then and now) I got from the women here was more than helpful: I had companions and guides when I really needed them.

    Thinking of you,

    bride

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    Hey all, checking in here to say hello. I finished 4 rounds of carboplatin with 12 weekly taxols and now have moved on to FECx6 (had one round of that and it kicked my a$).

    Made the mistake today of going out to some IBC specific sites on the internet and got really depressed so thought I'd come back here to check in with you people who do not make me nearly as freaked out.

    How are you? I love to know that there are some 5+ year survivors here. How about others who are still in active treatment?

    -Julie

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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2015

    Just thought I'd say - I'm 6+ yrs NED.

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    Thanks Kicks, it's people like you who keep me going. and not wandering around on the internet too much :)

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited November 2015

    Just diagnosed with IBC. I'm glad to see survivors on this forum. The previous time the BC forum was a huge support for me.

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2015

    MoreShoes, welcome to BCO (again?) We're glad you found us.


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  • Traveltext
    Traveltext Member Posts: 2,089
    edited November 2015

    I 'm just back from my one-year post active treatment visit and my surgeon couldn't believe how good I looked. Obviously, I'm NED.

    Oh well, one year at a time. Can't wait for the BIG 5.


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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2015

    Congratulations, Traveltext!!!!!


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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2015

    Traveltext - that's fantastic!

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  • Mamiya
    Mamiya Member Posts: 432
    edited November 2015

    MoreShoes, welcome!

    Traveltext, WOOHOO!!! Thanks for the HOPE for those of us in the active treatment phase, dreaming of being able to say "one year" and "two years" and so on.... :)

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  • Meadow
    Meadow Member Posts: 2,007
    edited November 2015

    Moreshoes welcome!

    Traveltext, what great news! Thankful for you

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited November 2015

    Thank you. I'm still at the very beginning of this traject. Monday I get a PETscan, then an MRI and Thursday I talk with my surgeon. Unfortunately this is my third time facing cancer and I know how it works. The previous time it was a tumor. Now it's IBC. I'm scared, numb and don't know what to feel.

    The previous time this forum helped me through the dark times, That's why I came back, to see a ray of hope.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited November 2015

    jessozzie. Go for it. Let us know when the page is up.

    moreshoes, there's lots of us around to help you. Check this thread too:

    https://community.breastcancer.org/forum/81/topics...



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  • MoreShoes
    MoreShoes Member Posts: 322
    edited November 2015

    Thank you for the link, Traveltext.

    Is there a list with questions I can ask my surgeon tomorrow? I've done the PETscan and MRI. Tomorrow I get the results and I'll hear what their plan is. I'd like to be prepared, cause this is not a tumor, so it's dealt differently.

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  • Meadow
    Meadow Member Posts: 2,007
    edited November 2015

    Moreshoes, check in one of the surgery boards...you will find what you are looking for I am sure. Good luck tomorrow.

    Chemo first should shrink/kill all areas of cancer so the surgeon can remove the cancer with the tissue. I would ask

    1. How much tissue and how many lymph nodes does he plan to take, this may change once he is in there. Also, ask about 2. recovery time and

    3. How many drains he expects you to go home with, again may change as he sees what is inside.

    4.Ask about how long before you hear back from pathology, as what he removes will go to them for analysis. Are you having recon?

    I know you said you have had cancer before (sorry) so this may all be the same as before, yes?

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited November 2015

    Thank you Meadow. I had twice cancer before. 2008 left side, triple negative tumor 2cm. 2012 right side, triple negative tumor 1.5cm. Now it's IBC. I had twice chemo and radiation. I'm sick of fighting and building my life back again. I want to be "normal".

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