Chemo failed

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Mamiya
Mamiya Member Posts: 432
edited November 2016 in IBC (Inflammatory Breast Cancer)

OK, so, super bad day. David Bowie dies and I find out FEC has failed. I have cancer in the skin (it wasn't "just a rash") and until we do a scan, we don't know where else it may have spread. So sad and scared.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    shit shit shit....it's not fair!

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited January 2016

    I am so sorry to hear that chemo failed. It just amazes me that anyone who has never experienced cancer thinks this is all so easy.

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  • Geeper
    Geeper Member Posts: 164
    edited January 2016

    Hi Notdoneyet-

    I am sorry that FEC failed. I know that this is upsetting, but keep your chin up. Next treatment will be successful!

     

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

    Well Crap! I just read this.....darn it all. I am hugging you...I am sorry you have had bad news. Take it one step and one day at a time... fight.

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    thank you everyone. I will let you know more when I know more. I am having my first PET scan sometime in the next few days and seeing Dr C on Monday. Scared!!

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    meadow, I am going to fight, you better believe it.

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Bon, it's on the skin and they did two punch biopsies so it's got stitches right now and I hope it will heal, I am worried about that! I have been using a first aid spray to calm down the itching and keeping a light dressing to keep the spray in (and off my clothes). I don't know what treatment is next, Dr C will come up with something. My MO who has been giving me chemo based on Dr C's recommendations said something about an immunotherapy clinical trial..

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    hydranne, I think I answered your question I. The above reply to Bon.

    Musiclover, you are so right. This is why Tig Nataro just makes me annoyed and that crazy sexy cancer chick too.

    Geeper, thanks, I hope your first taxol was and continues to be easy.

    Moreshoes, cancer sucks. That is all.

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

    Honey has been used for millennium for healing wounds/open wounds, often with other ingredients added depending on what needs to be used on.

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  • softness1
    softness1 Member Posts: 217
    edited January 2016

    I have CTCL (Cutaneous T Cell Lyphoma). It's a very slow growing cancer of the T Cells that manifest itself onto the skin because the lymphatic system is very close to the skin. I've had it for 22 years.

    My doctors originally thought it was eczema or psoriasis. I ended up going to a Dermatologist convention at Albert Einstein Hospital in NY and multiple doctors studied my biopsy and my skin. I thought I was a goner. I was 23 years old with a newborn. I've done "light therapy" and topical chemotherapy and so far so good on that front. I'll be praying for you.


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

    Bon - I have used honey (often with other 'ingredients') for years for many open wounds. I have not used with IBC skin issues or post surgery as I did not have any reason to (no open wounds needing care.).

    Does it work in all cases - an emphatic NO but it is an option (with Dr approval) that might and does not play into virus becoming 'super virus' with nothing that can fight them successfully.

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Bon, I am going to have a nurse look at my stitches tomorrow with the thought that I will not have her remove them just yet, worried that the healing won't happen in cancerous lesions (!) and then I will talk to Dr C on Monday about what I should do as well as ask him about his opinion of honey. I am kind of guessing I may just keep the stitches until I get on some treatment that makes the skin clear up.

    I am really interested in hearing more from softness1 too about what has worked in her case.

    Kicks, are you saying that you like honey as a natural alternative to some kind of antibiotic cream etc. that might just make drug resistant cells?

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

    Yes I do 'like'/have used honey on 'open wounds'- there are also other herbs that can be added to promote healing. And other 'stuff' that can help with healing. That is NOT saying that I will not/never use modern antibiotics but because of the over use of antibiotics in today's world, I prefer to use what was used years ago. IF the 'old stuff' doesn't work - then modern antibiotics are the way to go.

    NO - I have not used honey with IBC. I had no external sutures with my UMX - surgeon used surgical glue.

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Bon, thanks for that idea, I will ask the surgeon's nurse tomorrow. The stitches itch like crazy so glue is a good idea

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    I got the stitches taken out yesterday and surprisingly, the biopsy sites seem to be healing pretty well. I have no idea if that is a good sign but I am taking it that way - cancer doesn't heal, right? so if my skin is healing maybe it's not that bad... Or, wishful thinking on my part.

    PET tomorrow and Dr C Monday.

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

    Thinking of you NotDoneYet

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Thank you Meadow. Had PET scan today. Got scanned and got the hell out of there, I don't want to know anything until Monday.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited January 2016

    I know it's difficult but try to enjoy yourself this weekend. You can't change anything about the situation, you don't know the PET scan results yet, just enjoy the 16th and 17th January 2016.

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  • Geeper
    Geeper Member Posts: 164
    edited January 2016

    Hi Notdoneyet-

    Thinking of you love! I am praying that the results come back good.


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  • LMN
    LMN Member Posts: 35
    edited January 2016

    My chemo failed too and I just had surgery December 3rd. This past week I started 2x a day radiation. My pathology report from the surgery was not good but my margins were clear! What do you have planned next? I did try a different chemo but it also was not helping

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  • MusicLover
    MusicLover Member Posts: 4,225
    edited January 2016

    NDY, Best wishes for Monday's results.

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    MusicLover, Geeper, MoreShoes, thankyou for your thoughts. I am trying to enjoy the weekend and prepare myself for the worst (yet hoping for the best, as my grandma always advised). Having a birthday dinner for my 24year old step son this evening, steak, eat more meat is what my MO advised, trying to get my red blood cells as strong as can be so we are ready for the next hit, whatever that may be!

    LMN, what chemo did you try? I don't know what is next, when I spoke to my MO on Monday and he told me to go se Dr C he mentioned immunotherapy but until I actually see Dr C I won't know what he has up his sleeve!

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited January 2016

    Here's hoping your next treatment does the trick. I'm also IBC and have had good luck so far, and hope you will too.

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    WinningSoFar, you are someone I like to hear from, as you are triple negative IBC with bone mets and still going strong, very inspirational. Triple negative stage IV (if that's the news I get) IBC is a big hunk of scary to deal with! I am generally healthy and I think I can take just about any treatments they want to toss at it so I am hopeful that we can try some more (I know the choices aren't as many as ER+/PR+/HER2+).

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2016

    Not done yet,

    No inspiring advice concerning your dx. I am a lobular girl, ( sounds like a hip song ).

    I wanted to jump in and say, it all stinks, but somehow we put one foot in front of the other & keep moving. My chemo tx was legal torture, but would do it again if it buys me time.

    The IBC ladies will continue to help you.... Hugs, we all care..

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  • Mamiya
    Mamiya Member Posts: 432
    edited January 2016

    Holeinone, thanks, lobular is about as scary as IBC from what I know so your reassurance to me is well received.

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

    Welcome, LMN! We know you'll find great support here!

    You may also want to check out the Radiation forum where others going through rads right now support each other on the Winter 2015-2016 Radiation Therapy thread.

    We look forward to hearing more from you!

    --The Mods

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  • LMN
    LMN Member Posts: 35
    edited January 2016

    I did six rounds of TCHP (taxatore, carboplatin, herceptin and perjeta). It was every three weeks. The first two cycles I noticed an improvement in my symptoms. Then I started to have increased symtoms. After my sixth cycle with surgery scheduled here where I live I decided to get a consult at MD Anderson in Houston at the IBC clinic. Then I tried AC and we were hoping for a reduction in sympto

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  • LMN
    LMN Member Posts: 35
    edited January 2016

    i am still on herceptin targeted for my being HER2 positive and will stay on a full year, unless my plans chang

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

    Welcome LMN!

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