More chemo recommended...help?

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Lawgirl
Lawgirl Member Posts: 23
edited June 2014 in IBC (Inflammatory Breast Cancer)

Diagosed IBC red breast, orange skin , etc with 3 tumors, 1 was over 5 cm, lymph nodes affected. Had 4 cycles of a/c three weeks apart x 4. At #4, had severe reaction during chemo. Then started taxotere supposed to be 3 wks apart x4, had to stop after 2nd treatment severe neuropathy plus swollen tongue etc severe allergies. Had left side mx June 1. Scheduled for 6 wks, 36 doses, rads. Met with my surgeon post surf consult. He said pathology report "favorable", that I responded to chemo, tumor shrunk, etc. He was recommending to my onc more chemo, even with side effects. At that point I was so shocked I hardly heard anything else. Something about a positive node I think. But he kept emphasizing how high my risks were regarding recurrences, and said even with side effects recommends more chemo. He noted it's their judgement call, but there are a number of other drugs they can use...why would I need more chemo, I thought surgery and rads did the trick?

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  • Susanhf
    Susanhf Member Posts: 24
    edited July 2011

    IBC is so aggressive that nothing really does the trick, at least in my experience. I had all three and mine came back 2 mo. after 30 rads. Stick with chemo. if they think you xshould have it. I am convinced I didn't have enough (even tho I hated it.)

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  • Lawgirl
    Lawgirl Member Posts: 23
    edited July 2011

    Damn I'm sorry... And I felt they should have continued my last 2 cycles just made changes. The side effects were so bad they stopped. I now wonder if those last 2 would have made the difference

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  • dogeyed
    dogeyed Member Posts: 884
    edited July 2011

    LAWGIRL, I have aggressive cancer, too, and I remember when they first discussed treatment with me, they told me all the chemos I'd need, then surgery, rads, maybe a pill, and then also possibly more chemo.  I try not to think about the latter, obviously.  So, since I got IBC too, and my doc told me up front I might need more chemo despite surgery, etc., then you are within my similar protocol.  As for whether more chemo in the beginning would have prevented this, could be, but just as easily could not be.  You could have developed that node even if they had chemoed you for a year, becuz that's the nature of aggresssive cancer, unfortunately.  But at least they have the tools to best cover you, even tho it is a REAL pain that you must switch gears, while thinking surely they should have done this earlier.  But that's why they do 50 million followups thruout, and even when treatment all over, becuz if a little recurrence here or there pops up, they can slam-dunk it right away and with big success, until one fine day when they can FINALLY say cancer is no longer in your body. 

    Lawgirl, I'm just glad they found it now, while you're still in the midst of treatment, even tho the LAST thing you want now is chemo after letting go of it.  But in the end, yeah, looks like they could have zapped you back then, but I'm sure they have their reasons, so many of us go thru the same sorts of inexplicable things all over the country, there is a method to their madness else we wouldn't have 20 percent more women living now as compared to 50 years ago when our grandmothers' peers were stricken with BC, so hang in, it's just part of the whole lousy thing.  Sigh.   GG

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  • Lawgirl
    Lawgirl Member Posts: 23
    edited July 2011

    Thanks dogeyed. Just so frustrated. And starting rads, before chemo it looks like. Sigh I thought it was reverse. Hugs to you.

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  • anonymice
    anonymice Member Posts: 532
    edited July 2011

    Do the chemo, asap.  Absolutely.  We have the most aggressive type of breast cancer, and you are triple negative which limits your treatment options somewhat - having said that though, chemo is often more effective on cancers that aren't hormone receptive.  Attack it and eliminate it now while it is small and controllable.   

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  • lollypop59
    lollypop59 Member Posts: 123
    edited January 2012

    i am sorry to come in between your conversation i do hope you dont mind, but i am in a similar situation i had four nodules appear on my reconsruction in the skin last sept i had them removed and also quite alot of skin, but in the end my onc said i dont need any further treatment because i was cancer free which was good news for me, by the way i had aggressive chemo and 15 rads plus hereceptin only fifteen because it was stopped for the last three because of my heart. but now i have just had another punch biopsy today because three more have appeared and they said if they are cancer cells thats popped up again i will proberly have chemo this time, i am so worried, im sure i did not have enough chemo to start with what do you think i am from the uk and i know they are a bit more advanced in the states i am very confused about this .

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited January 2012

    Lollypop,

    I hear they have some good cancer centers in the UK, even for ibc.  Generally, triple- patients in the states are on chemo the majority of the time.  You may want to check out the triple - board since you may not be able to go back on herceptin.

    Terri

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  • lollypop59
    lollypop59 Member Posts: 123
    edited January 2012

    hi ibcmets, yes the hospital that i am under i vey good i did ask about what will happen if these nodules are cells again but my breast nurse most proberly chemo i did ask about tykerb before but they are not actully uses this yet my onc said, so i will see again on mon when i get the results.

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  • ma111
    ma111 Member Posts: 1,376
    edited January 2012

    IBC is very agressive.

    Neurotin can help with the neurpathy. I am on 600mg 3 times a day for it. At one point I could not walk because of neuropathy, now I can. I hate when oncs do not treat side effects. Ask for the neurotin, (generic is gabepetin).

    Chemo will help kill the stuff that traveled.

    Sending hugs XOXOXOXOXOXO

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  • lollypop59
    lollypop59 Member Posts: 123
    edited January 2012

    hi ma111 i dont really no anything yet, thiss is the second time now these nodules have popped up , the last time was three months ago , my it turned out my onc said no treatment needed because there was no evidence of the deasease, after thet removed the nodules, but now its happened again they are talking of chemo because i have already had 15 rads which finished last june, i will see on monday, thatnkyou for replying takecare x

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  • ma111
    ma111 Member Posts: 1,376
    edited January 2012

    Keep us posted and I'll keep you in my prayers.

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  • chester2010
    chester2010 Member Posts: 101
    edited January 2012

    I had positive lesions on my breast about 5 months after I`d completed all treatments.  I was prescribed Xeloda (oral chemo) and it cleared up the skin straight away and I`m still on it, 7 months later.  Side effects are another issue though! 

     Good luck tomorrow and keep us posted, we will try to help.

    Kathy

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  • lollypop59
    lollypop59 Member Posts: 123
    edited March 2012

    wll hi ladies,

                i was dx with lug mets two weeks ago , i have started with chemo on my third et wed plus on my second herceptin, how are all you ladies doig hope you are all feelig well. x

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