IBC Recurrence, Very Fast

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gracefarm
gracefarm Member Posts: 17
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello All,

This morning the oncologist said the IBC is back, 9 months after diagnosis ... 5 months after 19 weeks of chemo, 3 months after mastectomy, and two months into the Aromasin regimen.

Am not scared or depressed (yet) and will probably elect to have more chemo. Really hate to go through that again but my brother the physician's assistant says I can always stop if it gets too bad and choose quality of life instead, but if I choose no chemo now there would be no option to go back and start again. This makes sense, but I will think a lot over the weekend and decide. Having bone and CT scans on Monday.


Has this sort of local recurrence ever happened to any of you, and what did you do about it, and how did it go? I have exactly the same kind of rash/bruising as at diagnosis and it is moving fast, up, down, to both sides, and just tonight ... to my back. It changes every day. Stupid disease.

Thanks much.   At least I don't have to take Aromasin anymore!!  :-)  Kim in Ohio

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2011

    Sorry Kim about the reoccurrence.  I'm about 1 1/2 years out. I just had a BMX since I've been stable for about a year.  I don't know  the percentage of reoccurence.  You may find out on ibchelp.org.  Pray that your new treatments kick this back to NED.

    Terri

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  • deborrob
    deborrob Member Posts: 37
    edited February 2011

    I don't know about recurrence of IBC, but my IBC recurred after IDC and very fast too.  I had just healed up my skin from radiation when the rash started.  Probably wasn't much more than a month after radiation ended.

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  • hope123108
    hope123108 Member Posts: 58
    edited February 2011

    Hello Ladies,

    I am triple negative and see a purple like rash developing.  Also what a normal person would think was a bug bite, however when you have aggressive cancer you always wonder.  Could you describe your rash?  Don't really know what to get excited over anymore. 

    Bless all the knowledge on these boards,

    Hope

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  • Betterwannabe
    Betterwannabe Member Posts: 153
    edited February 2011

    I am really sorry that it came back this fast, prayers to you all!

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  • gracefarm
    gracefarm Member Posts: 17
    edited February 2011

    Go, go, go to your oncologist, Hope, and make them take a biopsy! My rash/bruising is the same as at the original diagnosis of IBC, with weird bruises that come up fast and heal fast. My biopsy was positive. You cannot be too careful with IBC. Please let us know what you find out.

    Kim in Ohio

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  • HollyinMich
    HollyinMich Member Posts: 210
    edited February 2011

    ((((((Kim))))))  So sorry to hear about your reoccurance.  My thoughts and prayers are with you!

    Hope, wishing you the best and I agree with Kim, get it checked out ASAP!

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  • hope123108
    hope123108 Member Posts: 58
    edited February 2011

    Thank you ladies.  I called for appointment.  Next questions I have any of you had luck with treatment?  I seem to have all the symptoms they start large and red and leave a big dot.  Oh how i appreciate these boards, people at home just don't get it.  Bless them for not having to deal directly with it. Let us make the most of our day!

    Hope

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  • anonymice
    anonymice Member Posts: 532
    edited February 2011

    Well hope, I am early in treatment but had a very quick response from chemo - everything (rash, swelling, pain, partial nipple inversion, aureola discoloration, lymph node swelling) was entirely gone about 2 months in (I am in month 5 of chemo now).  Major symptom relief started within a week, swelling went down fast, rash was last holdout.    

    I started with cytoxan and adriamycin.  Now am on Taxol and Herceptin.  I can't speak to recurrence, but do know that response has been very favorable so far in terms of initial treatment for it.  

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  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited February 2011

    Hi Kim,

    So sorry you've had a reoccurance of IBC.  My initial treatment was A/C dense dose X4, 8 taxol, 3 1/2 taxotere; BMX & radiation.  I haven't had a reoccurance so I can't speak to that,. Have you had a biopsy to confirm the reoccurance?

    My rash didn't spread that fast. I did get a rash last summer & was told it was just radiation in the skin, biopsy negative.  But after tons of antibiotics, cellulitus (3 days in hospital iv antibiotics), manual lymph drainage it has almost cleared up.  I think the back area is part of the LE, lymphedema.

    Just thinking out loud.  Sending love & support. NJ

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  • gracefarm
    gracefarm Member Posts: 17
    edited February 2011

    Thanks to you all for your hugs and support. What would we do without each other? Had the biopsy Monday, Feb. 21, saw onc and surgeon next day, they say so very sorry but IBC is back and they've never seen it come back so quickly and aggressively. Oh goodie, but at least I will make one heck of a research study.  :-)  Starting Taxotere (with Decadron) and Xeloda tomorrow (Thursday, Feb. 23) ... worrying because the women on the Chemo Forum say Taxotere is hellish. Your prayers and good thoughts for minimal side effects would be very much appreciated. Not really scared of cancer, but those side effects creep me out. Will keep you posted, Hope, on how my treatment goes. Thank you for moving up your appt! -- Kim in Ohio

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  • leisaparis
    leisaparis Member Posts: 587
    edited February 2011

    I had Taxotere. I think the only side effect I had with it was the falling off of SOME of the nails. Of course I also had 5FU(the RED DEVIL). That could have caused it too.

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  • anonymice
    anonymice Member Posts: 532
    edited February 2011

    Kim,

    I'm so sorry it's back, and so soon, but hopefully this time the chemo will kick it's butt back for good!!  

    About the Taxotere, I know there is the thread that says "taxotere is terrible" and it sure as heck can be.  But for you, you could very well sail right through therapy.  We all talk about our pain and our problems because it helps us but if I were taking taxotere and had almost no SEs I would feel badly about saying how easy it is for me when others are having a bad time with it.   I hope the side effects are gentle on you.  (((hugs)))   

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited February 2011

    I had taxotere, adriamyacin & cytoxin at the same time for 8 months with ibc diagnosis.  I had a lot of bone pain only on the first chemo because they also gave me zometa.  Thereafter, I had zometa a few weeks apart from my chemo and was fine.  I did take B12 tablets for neuropathy which helped a lot.  The worst was the extreme fatigue for me.  I did not lose my nails and they did not get black.  I did overly tear a lot from my eyes and took benadryl to dry that up.  Good Luck.  I don't think it will be that bad.

    Terri

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  • gracefarm
    gracefarm Member Posts: 17
    edited February 2011

    Thank you, ALL of you, for your support and excellent advice. I will try Claritin (if onc agrees) and ice. Yesterday's first Taxotere went fine; nurse said an allergic reaction would happen in the first 15 minutes, and it didn't. This morning there was a bout of nausea that quickly went away, and now my stomach hurts (eating ginger and a banana helped some), but otherwise I'm okay.

    Didn't even have to ask for a second opinion. Both doctors suggested it first. Next Wednesday I go to Riverside Methodist Hospital in Columbus Ohio for a Second Opinion Breast Clinic, and it's free, funded by the Komen Foundation. Wow. Will probably also travel to Philadelphia to see Dr. C ... maybe take Amtrak and make a Most Excellent Girlfriend Adventure out of it.  :-)

    Bless you all for caring for each other. Hope, could you give us an update on you?

    Kim in Ohio

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  • marium
    marium Member Posts: 65
    edited February 2011

    hi, every one Sorry dear kim to hear ab recurrence, My MOM diagnosed wd IBC in 2010 had chemo/texole than  MASTACTOMY ,her onco announced ur body is nw clear frm ibc but with in 3 weeks red spots appeared which in days tym turned into big painful rashes which onco stated to be recurrence.                

                       she was adviced fr RADS twice a day,which she received fr cont 14 days aft  a week  or two again   the red spots turned into rashes n biopcy repd  conf the 2 nd recurrence.she has rushed to her onco and  nw I m waiting fr his  new chemo adv. I hate to c the pain my mom goes  through the treatment and the disease re appears and the sad part is  I m so  helpless. I c God in  da sky, hope  in my heart n Onco by my eyes. May allah keep us blessed.

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  • marium
    marium Member Posts: 65
    edited February 2011

    thank u fr ur  kind concern Bonnie.its a local recurrence for second tym.we  r v hopeful that new  chemo therapy will help her. ameen

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  • hope123108
    hope123108 Member Posts: 58
    edited March 2011

    Hello Ladies,

    This area has been quite for awhile.  I did as you all suggested and went on Oncology and then to dermatologist regarding red rash or something. Oncologist PA said it is not hives two day later went to dermatologist and he said oh yes you have hives.  I honestly do not believe it is hives. Don't know where to go from here nobody wants to take it seriously. Just always so scared they are missing something (mom gone from breast cancer) does not help one bit.  Thank you all for you never ending support.

    Stay well,

    Hope

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  • gracefarm
    gracefarm Member Posts: 17
    edited March 2011

    Hi Hope -- sorry to be absent for a bit (dealing with chemo, etc.). What a shame that no one will take you seriously. Time to find another doctor who understands IBC is nothing to mess with. You need reassurance. Perhaps someone on this board can recommend a doctor in your town, or you could start a new topic and ask for recommendations. Jeepers, you shouldn't have to work so hard at this!!! Makes me mad.

    Kim in Ohio

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  • marium
    marium Member Posts: 65
    edited March 2011

    gemzar is   not  workin,its spreading,we r feeling helpless,they r waiting to get go in organs????   or what?????????????

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  • marium
    marium Member Posts: 65
    edited March 2011
    thank u
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  • LynnB
    LynnB Member Posts: 4
    edited August 2011

    Hi Kim, I too have a recurrence of IBC after 5 months of finishing tx. I had mastectomy first (wrong) then dose dense chemo a/c x 4 and taxol x 4 and rads x 25. I now have confirmed recurrence with skin punch biopsy. Oncologist here in Ontario Canada has no idea treatment, she even suggested surgery :( Please help. What treatment did you get and did it work. I can't afford to go to Fox Chase or MD Anderson. Any info would be great. I hope you are doing well. Lynn

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  • HerSister
    HerSister Member Posts: 51
    edited August 2011

    Hi LynnB,

    I am sorry about the recurrence! 

    I wanted to suggest to you that you start another thread asking for advice (since I think you would need it quick).  I noticed in the post above, you asked Kim what her treatment was, etc.  She has not signed onto these boards since March '11. 

    I HATE it when members go missing - makes me think the worst  :(

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  • lollypop59
    lollypop59 Member Posts: 123
    edited October 2011

    i was diagnosed with ibe last sept 2010, i ha chemo first then maseceptomy,reconturuction, then rads, my herectin finishes 3rd jan, but now had reccurance in skin, waiting for ct scan, done know threamtment yet, it depends on scan results.

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  • Laura_Jean
    Laura_Jean Member Posts: 48
    edited October 2011

    Sorry to hear about your reccurance in the skin. Hope your scan results go well.

    Laura Jean 

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  • lollypop59
    lollypop59 Member Posts: 123
    edited October 2011

    hi my scan was clear but having another op next week to have my nodules removed and my silcone and proberly more treatment after, thankyou for replying. x

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  • lollypop59
    lollypop59 Member Posts: 123
    edited October 2011

    hi laura jean,

             i see you were diagnosed a month before me last year, has i said i have had a local reccurance in the skin they were four nodules, they have been removed also the silicone have been removed, my surgeon said possible chemo again but wont know until 31st oct is when i am going to see him.i am still on the herceptin intil 3rd jan 2011 but he said my oncoligist will most certainly keep me on the herceptin longer. what i have noticed the ladies on this site seems to be very noligable about ibc, and also i think the states i a bit more far advanced with treatment has well, i do have a very good surgeon, which i have been told and he is very nice, i am just venting at the moment, just hoping no more chemo, NEUTROPENIA  last time... can you tell me what treatment you had for local reccurance.

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  • lollypop59
    lollypop59 Member Posts: 123
    edited November 2011

    hi ladies i had a reccurance 11 months after chemo started, my reccurrance in the skin, nodules, now had them removed and the silicone, now waiting to see if i need more treatment, possibly chemo they said also they are keeping me on the herceptin longer.

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  • lollypop59
    lollypop59 Member Posts: 123
    edited December 2011

    scan results were clear did not need any further treatment because i am cancer free and hope it stays that.way.

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  • anonymice
    anonymice Member Posts: 532
    edited December 2011

    Yay, congrats lollypop59!!!  That is awesome, awesome news!!

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  • lollypop59
    lollypop59 Member Posts: 123
    edited January 2012

    hi pamonymous, just seen your reply  thanks for that but i just found two lumps appeared again on my recon, going to see my surgeon next week, it just never ends, hope you are feeling well yourself and happy new year to you!!!!!!!!!!!!!!!!!!!

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