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

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Comments

  • Valstim52
    Valstim52 Member Posts: 833
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    Welcome Roedyelinda.

    As as been stated, your road and path to treatment has been the standard for many of us. I just had my surgery and will start rads in July

  • Valstim52
    Valstim52 Member Posts: 833
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    Traveltext, I had a gentleman in my chemo class, he was the most positive of all of us. And yes he has IBC

  • Valstim52
    Valstim52 Member Posts: 833
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    BS gave me good news. My path report shows PCR and clear margins, so my chemo did it's work. They took out 17 lymph nodes no traces of cancer. Considering my PET scan in January was lit like a Christmas tree, I'm very pleased.

    there is so much good on this thread and experience. Use it, it has been invaluable to me.

  • Scwilly
    Scwilly Member Posts: 232
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    SuseM49:

    I had my last Chemo (last of 12 Taxol's) on April 1st 2014 and then had my surgery on April 29th 2014. So 4 weeks/28 days in between.

    Roedyelinda:

    So sorry you had to join our 'club', but you will find so much support here on breast cancer.org. Not only practical advise but warmth and emotional support too. I am 2.5 years out from my diagnosis and feeling great. It may not feel like you will ever get through this - but you can. Congrats on dying your hair - I had thoughts of doing that too - but never followed through.

    Valstim52: Fantastic news!

    Sarah

    Hug

  • MoreShoes
    MoreShoes Member Posts: 179
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    SuseM49, between waiting too long for the CT scan, and my BS being on vacations, it was 8 weeks for me between chemo and surgery.

    Valstim, that's fantatstic news!!

  • Valstim52
    Valstim52 Member Posts: 833
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    SusieM49 it was exactly 4 weeks for me between last chemo and surgery.

  • meadow
    meadow Member Posts: 998
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    Val, Happy for your great news!

    Susie, 4 weeks for me

  • traveltext
    traveltext Member Posts: 1,053
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    Valstim, wow, PCR and clear margins. Party time. Glad to hear your IBC chemo guy was the most positive, I think we all should be optimistic about our outcomes because treatments are improving all the time. I wasn't PCR, but my BS says, as the years roll on without recurrence, my survival odds fall back closer to the percentages of those attaining PCR post surgery. That's something to sustain optimism!



  • Valstim52
    Valstim52 Member Posts: 833
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    I agree Traveltext and you are rolling by NED and that is what counts .

    I think with IBC they are glad for any response, and I'm definitely living with the here and now, after dark clouds these past few months

  • MoreShoes
    MoreShoes Member Posts: 179
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    Got the pathology results back. Nothing to be seen on the right breast. There were spots of IBC and growing fast when I started chemo. In the left breast, there was a DCIS. I started with a 3 x 8 cm IBC tumor (or however that thing is called).

  • kicks
    kicks Member Posts: 319
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    We are each unique and not all have the same TX plan.

    It was 2 weeks after my last neoadjuvant DD A/C til UMX. 3 weeks after UMX I started 12 weekly adjuvant Taxol. This is not what most do but what I did. Aug will be 7 yrs since DX and still NED. Rads started a week after last Taxol and started Femara (was not available in generic form then) a week after starting rads (2 weeks after last Taxol).

    There are different TX plans though most will do 2 neoadjuvant Chemo instead of what I did - neoadjuvant AND adjuvant.

  • Milwmama
    Milwmama Member Posts: 84
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    Roedyelinda-welcome to the club. These people on here are awesome. I'm newer myself and have found these boards to be a Godsend.

    Very happy for everyone with some good news. Any good news is always welcomed.

    Had a fantastic long weekend here. Weather was awesome and had friends from out of town at our house. Lots of motorcycle riding, a nice Memorial Day celebration. Oldest daughter got engaged. And since I haven't had chemo for a few weeks, I felt great!

    Had an MRI yesterday. I too have good news. No mass or nodes seen, only a small amount of thickening of the skin!!! And 5 More treatments to go! I'm cryin' 😂 Hoping for good white cell count tomorrow to get back on track. Surgeon meeting scheduled for June 20th.

    Moving along.......


  • Valstim52
    Valstim52 Member Posts: 833
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    Milwmamma, Moreshoes. Hooray for good news.


  • positivewoman
    positivewoman Member Posts: 3
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    Early on for me - diagnosed March 2016 - IBC - left breast with 3 lymph node involvement (left) - 3 chemo treatments so far (AC) -

    PET scan & MRI ordered to determine if liver involved...

    So far, doing very well.

  • positivewoman
    positivewoman Member Posts: 3
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    Welcome roedyelinda ! Hang in there - we're all pulling for you - it's a busy job, having IBC -

    Is anyone else getting neupogen shots (subcutaneous - self-administered) 2 days after chemo to promote bone marrow to produce more white blood cells? Seems to be working for me - keep imagining just how strong my 67-yr old body is doing...they tell me I have the recuperative abilities of someone in their 30's, so that's great!

  • Milwmama
    Milwmama Member Posts: 84
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    I had Neulasta during AC. Helped me, but now with Taxol/Carbo none and have missed some weeks. Today is my day, hoping for high enough counts 🙏👍

  • sbelizabeth
    sbelizabeth Member Posts: 956
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    For those on neulasta or neupogen, be sure to ask your onc about taking claritin for the bone pain. It really, really works.

  • meadow
    meadow Member Posts: 998
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    Positivewoman, that IS great! Go girl!

    Milwmama, did you get to have the treatment? FIngers crossed!

  • MoreShoes
    MoreShoes Member Posts: 179
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    Hey Purple, how is the Carbo going? Do you have a good week?


  • Valstim52
    Valstim52 Member Posts: 833
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    HI Everyone,

    I hope all have a good week, Hi Purple, Hydranne and everyone. Hey Moreshoes

  • Milwmama
    Milwmama Member Posts: 84
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    Meadow, did get my Taxol. I barely made it, but I got it. Onc dropping last Carbo and lowering the taxol makeup. 4 more!

  • Valstim52
    Valstim52 Member Posts: 833
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    Hey Milwmama, glad you got your Taxol. Sending gentle hugs and greetings.

  • Milwmama
    Milwmama Member Posts: 84
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    Thanks Val. Back at ya. Hope the weekend was well for everyone. Showing my pride. My oldest daughter did the Avon 39 walk this weekend in Chicago, that's where I spent my time tracking and cheering along the way. 39.3 miles in two days, she deserves some kudos. Lots of people do that were there.

    image

  • MoreShoes
    MoreShoes Member Posts: 179
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    Oh Milwmama, congratulations on your daughter! It's a big achievement, you're rightfully proud of her.

  • trudy-erl
    trudy-erl Member Posts: 11
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    Hi:

    I would appreciate talking to someone who has been on the AI Letrozole for more than 5 years. This is my first time on the IBC lounge, so I may screw up. :)

    Thank you.

  • trudy-erl
    trudy-erl Member Posts: 11
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    Oh, so that's what you were told. uhmmmm, I had my surgery not even 2 weeks after my last dose of Taxotere. However, I did very well. I'm an old timer............. :)

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    trudy-erl, welcome to the lounge! You really can't screw up here, no worries. I don't know who may be able to talk AIs with you, I am ony one year in and triple negative so have no info on that, but stick around, someone will!

  • meadow
    meadow Member Posts: 998
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    Welcome Trudy! like Purple,I too am triple neg, so not my experience with AIs, but like she said,there will be others who can help. Glad you are here with us.

  • traveltext
    traveltext Member Posts: 1,053
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    trudy-eel just search thi site for Letrozole and you'll find lots of info.


  • talpha1
    talpha1 Member Posts: 5
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    Hi all. I just received the news that I have mets in my lungs. The biopsy confirms it's the same breast cancer. I was taking tamoxifen and he wants to switch me to one of the AI drugs, which I guess means I either need to get shots to shut down my ovaries, or have them taken out. I'm 40 now, diagnosed at 37. Anyone have any experience with being put into menopause with either the drug or surgery?

    Mentally, I'm devastated. I was so sure they got it all. I'm having a really hard time with this. It seems like my cancer is not ever typical. I was so worried about bone mets, and it went to my lungs.

    Any advice is appreciated.