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

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

    Hello All

    Almost done with rads #22/25 regular then on to boosts. My skin is quite red and uncomfortable but doable. Looking forward to moving on. I do have some neuropathy in my fingers from taxol but overall i'm feeling pretty good. Any suggestion for neuropathy?

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

    you must just about be done with the rads now Val. Woohoo. Sorry about the neuropathy, but that will likely subside with time. What is the plan fork hormonal therapy?


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

    Thanks Traveltext, no hormonal for me as I'm triple negative, though 24 years ago I was on tamoxifen for a year.

    Just clean eating and working out for me. Since I'm negative for all the gene testing no additional chemo for me. My MO feels xeloda would not really benefit me unless I recur. I'm working on getting to the mindset I was years ago, after a while, I truly did not think about having breast cancer. Ofcourse mammogram time was rather stressful, but overall I went ahead with life. Trying to get to that point again.

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  • Milwmama
    Milwmama Member Posts: 115
    edited July 2016

    Just got back from vacation and prepared to talk about my upcoming surgery and talking with Purple. My heart hurts today. She was one of the first to reach out to me 7 months ago.

    Cancer sucks. It has taken far too many people from my life and leaves me fighting for mine.

    God bless all of us affected by this monster.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited July 2016

    Val, we're going to get there. We don't go through all these cruel treatments for us to live in fear. One thing I've learned the last 10 months is to love myself.

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

    Milwmama, yes we miss purple. She reached out to me under a different name when I first dx, and she was so supportive and positive. She seemed to know it may not turn out well for her, but she really kept me going in the beginning and then restarting this thread.

    Moreshoes yes only a few more treatments. I'm a little jealous of those that go on AI's or tamoxifen. I feel like I'll be hanging by the cliff, but I gotta get my mine right.

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  • dancingdiva
    dancingdiva Member Posts: 475
    edited July 2016

    Hi I'm new to this IBC thread.

    I'm sorry to hear about Purple and Geeper....my condolences for your husband. May u be strong and courageous in this difficult time. Hugs

    D

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

    dancingdiva, welcome!

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

    Dancingdiva Welcome

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  • Milwmama
    Milwmama Member Posts: 115
    edited July 2016

    Welcome DancingDiva.

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

    MD Anderson established the world's first inflammatory breast cancer clinic and sees around 100 cases of IBC each year, more than any other center in the world.

    They give an excellent overview of all aspects of IBC on their website HERE.


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

    The IBC research Foundation is a grassroots non-profit dedicated to facilitating research to improve diagnosis and treatment of inflammatory breast cancer (IBC) as well as education and support. IBCResearch.org


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Hello all,

    This is my first post on the IBC lounge. Just a test post really to check I have done things correctly.



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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    Dear minimoocher,

    Welcome to the BCO community. We are so glad that you reached out to our members. Congratulations on your test post. Please stay connected here and throughout the boards and let everyone know how we can help you. The Mods

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

    Welcome Minniemoocher. You will find wonderful support here.

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

    Welcome Minniemoocher. I ac see that you are two weeks post surgery and hope you are healing well. Is radiation a part of your treatment plan?


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Hi Traveltext,

    Yes I am due to have radiotherapy as well after surgery wound has healed enough.

    Minimoocher


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Thank you Valstim52 ,

    Have been following this thread for a while but didn't have energy during chemo to contribute.

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

    The IBC Network Foundation has launched an informative and interactive app available to anyone wanting to know more about Inflammatory Breast Cancer.

    Visit the app store or Google Play to download!

    Download links:

    https://itunes.apple.com/mz/app/ibc-network-foundation/id1057060299?mt=8

    https://play.google.com/store/apps/details?id=com.ibcnetowrk.ibcnetwork


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

    Minimoocher, Welcome! Hoping you are recovering from surgery well, feeling a bit more comfortable. About time for the drains to come out? Gentle hugs to you

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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Hi Meadow and Hydranne,

    Thanks for your warm welcome. I am doing well post mastectomy. Got the drain out and wound care nurse pleased with my healing so far.

    Arm exercises are still painful, cording an issue but hay-ho must do them to get ready for radiotherapy planning.

    minimoocher x


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

    MM, re rads. Common for IBC rads, and used on me, was a bolus (read about it HERE). This item lays on your chest and concentrates the rad beams closer to the skin. Obviously this is best for IBC patients. Second, you could ask if they will use a plastic film with the trade name Mepitel, which is fitted before you lay down for treatment, and which reduces the chance of radiation burn. It was used on me and I had no blistering at all after 25 doses. And while I had a bright red square, there was no soreness.


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Thank you Traveltext, best be prepared going into radiotherapy planning appointment in a couple of weeks. Will ask about bolus and mepitel dressing.


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

    Did I hear someone ask "what is mepitel?" If so, here's a pic of me with the film on about mid-way through treatment. It remains in place for the duration, but is replaced if it comes off in places, which it will in hot, humid weather. As much as anything, the film cuts down the irritation of clothing that rubs and irritates the skin constantly between treatments. You can see the rads here targeting both the breast and axillary areas and that the skin is burning but is intact.


    image

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

    This paper is still viewed as one of the best on IBC. The explanation of the diagnosis is clear and it sets out the treatment protocol. Check it out HERE.


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  • minimoocher
    minimoocher Member Posts: 62
    edited August 2016

    Thanks for posting the link Traveltext.

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  • LindsayTNIBC
    LindsayTNIBC Member Posts: 4
    edited August 2016

    Hi All- happy Saturday. I am wondering if anyone that was on AC+Taxol plan had issues and went to different chemo drugs mid way through? Did anyone have Navelbine and/or Gemzar? Also, did anyone have to bail on chemo and go to surgery earlier than expected? Would love to hear from anyone who did not follow the "typical" IBC treatment plan. I am having some bumps in the road and hoping others have experienced some of these things as well.Thank you!

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  • Milwmama
    Milwmama Member Posts: 115
    edited August 2016

    One week post op doing pretty well. Pain is mostly tolerable with Tylenol now, up to yesterday was taking oxycodone. Met my onc yesterday for check up an path report. Good report with a but. Surgery went well for both. Mastectomy looks good, had three drains, which I hated, two were removed yesterday and holy shot that hurt. Able to raise arms pretty well. Report stated clean margins, 14 nodes removed all clean. No spreading or cancer on my body but.........there were two minute tumors in removed breast that had been affected by IBC. Could have been there and were now microscopic, or something. Nonetheless, going to be put on Xeloda for 8 rounds, about six months, after radiation. Ooph was perfect, no signs of anything in my ovaries or tubes.

    Have to admit I was bummed. Really wanted to say I was NED. Guess I won't ever be able to say that. Glad I have the option of further treatment as a TN tho. Once done with rads and Xeloda I'm done and will be monitored.

    Was a little shocked and sad at seeing my new chest. I'm cut from pit to pit, with a small space mid chest with some skin saved for reconstruction at so e point. This too shall pass. Healing and moving on.

    Hope all the rest of you are well.

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

    LindsayTNIB. Sorry that no answers were forthcoming to your questions posted here. Are you more relaxed about your treatment path now? Will you complete your chemo before surgery?

    Milwmama. You're certainly going through the mill! Clean nodes and clear margins are always good news. regardless of the two little tumors in the removed breast, and they likely haven't traveled anywhere if the lymphs were OK. Woohoo for a good ooph report. Don't think you'll never be NED, most get there. If you wish, you could update your profile so that we can follow your treatment better.


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

    Hello All

    I'm done with treatment. Nursing some nasty rad burns, but they are turning the corner. Plan to go on vacation next week. It's been a long 9 months and I'm trying to look forward without doom.

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