Radiation for IBC

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LMN
LMN Member Posts: 35
edited February 2016 in IBC (Inflammatory Breast Cancer)

has anyone had the twice a day rads? I just made it halfway through last Friday (22 treatments in 11 days). I will be done February 15th. This is the first time I have really felt negative during all of this. I have an eleven year old daughter and left her dad a year ago. We live in a small apartment and my twenty two year old son moved in unexpectedly mid December. My son had his wisdom teeth out to top everything off and we have not been getting along. I am not happy with the mess the apartment has become and am tired. Thanks for listeniing

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  • Mamiya
    Mamiya Member Posts: 432
    edited February 2016

    LMN, I can relate to the "house is a mess and that is not helping me" feeling for sure, especially when we are down and out from treatments. I've been slowly training my family to pitch in but it sounds like you haven't had that time (since your son has only been there a few weeks). Have you tried "cleaning for a reason" to see if they have any openings in your area? It would be nice to have the kitchen, bathroom etc really clean and maybe vacuuming and dusting. Chin up, you are almost done with the big active part of your treatment, congratulations (almost)!!!

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  • LMN
    LMN Member Posts: 35
    edited February 2016

    thanks Bon and Mamiya cleaning for a reason is on their way!

    Twice a day rads is unusual here but I think it is done frequently with IBC patients at MD Anderson in Houston.

    My pathology report was not very good and warrants the more aggressive approach.

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  • LMN
    LMN Member Posts: 35
    edited February 2016

    interesting I love emu oil! I am fair skinned using aquaphor and aloe Vera so far ok but 19 more rads to go! Seeing my PT in a minute. I had lots of lymph nodes removed and am trying to prevent lymphadema. My arm does not like the radiation

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

    LMN, is there a reason you are having twice a day rads? I must have missed it. I'm an IBC as well, and won't have them till after surgery. Was told had to have at least 33 once a day five days a week.

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  • Mamiya
    Mamiya Member Posts: 432
    edited February 2016

    As I understand it, some IBCers do get twice daily rads, it depends on where you are seen and your age/health etc. I believe MDA does this, not sure where else.

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  • LMN
    LMN Member Posts: 35
    edited February 2016

    My rads are twice a day partly because I did not have a complete response to chemo. if you google MD Anderson radiation for IBC there are articles on using this approach. In my case it did seem warranted and I am working with MD Anderson both in Houston and where I live in Albuquerque (we have an MD Anderson radiation center here). I will be done Monday!!!

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  • LMN
    LMN Member Posts: 35
    edited February 2016

    My lymph node involvement was high and my mass was large.

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  • Kicks
    Kicks Member Posts: 4,131
    edited February 2016

    My understanding is that twice a day rads is a somewhat newer radiation option. I heard abouf it being used more commonly/sooner in Canada than the USA for different types of BC.

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  • LMN
    LMN Member Posts: 35
    edited February 2016

    There is a newer type of twice a day radiation being used for breast cancer that is not for IBC. The reasons for my twice a day treatment can be googled. When I consulted with the IBC clinic in Houston there was an RO named Wendy Woodward that was part of the IBC team that saw me. Because there is an MD Anderson radiation center where I live Dr. Woodward was able to consult easily with my Dr. here. Perhaps the twice a day rads will help mme beat this aggressive disease. How

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  • LMN
    LMN Member Posts: 35
    edited February 2016

    kicks, how did you get through your IBC experience?

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  • Sherlocked
    Sherlocked Member Posts: 46
    edited February 2016

    LMN, I know one lady who had rads twice a day. But, she's a 30-year IBC survivor. She is absolutely positive that saved her life. Since other treatments were not all that advanced for IBC at the time, I would bet she's exactly right. Possibly, her success is one of the reasons you're having it now!

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  • LMN
    LMN Member Posts: 35
    edited February 2016

    Wow, a 30 year IBC survivor! That is exciting. I think that in the past radiation was one of the only things they could do to help IBC. Perhaps the twice a day will become more common again. I'm just glad to be done with rads. I am feeling fried!

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