We need advice and hope! please

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markcleveland
markcleveland Member Posts: 11
edited June 2014 in IBC (Inflammatory Breast Cancer)

My 34 year old wife was recently diagnosed with stage 2 breast cancer 1 month after having our 2 child. Triple neg, non hormonal. On her 5th treatment of adriamycin and cytoxin, we noticed a red rash forming under her right breast. within a week her breast began to swell and went flammatory. Our doctors then put her on zeloda and ixabipolone(sp?) which she had a good response to. She recently had her a mastectomy and removal of 21 lympnodes. One node was obvious and 6 more still had cancer. But her tumor that was removed and had shrunk by half. there now has been two red spots that had appeared on her chest right above her incision. Biopsy revealed it was cancerous. Her new gameplan now is radiation twice a day while taking zeloda again. Her doctors said what she has is rare and very aggressive.

We are very concerned and Im flipping out. I recently lost my mother last february to breast/brain cancer. Not a good year. Has anyone on here ever heard of similiar cases and success stories? We really need some hope. I know a lot of you ladies on her are troopers. I read all your posts to find hope but now I'm finding it difficult to...I pray daily to Christ for her healing and I know that should be enough but I would like to show her she can beat this at her age. Please feel free to comment. Please. 

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited December 2012

    Mark- Im so sorry to hear about your wives diagnosis. And very sorry about the loss of your dear mom. Your right not a very good year for you ((hugs)) I don't have any knowledge of IBC but wanted to stop by and let you know others will be along shortly who will be able to give you better advice than I could. There is also a IBC site here that may be helpful while you wait for some one to show up.

    There are a lot of success stories here with others having a recurrance with IBC  even with stage 4 bc here, they are always coming out with new meds. Sending you and your wife love hugs and prayers

    Debbie

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited December 2012

    Sorry I see you are already in the IBC forum!

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  • markcleveland
    markcleveland Member Posts: 11
    edited December 2012

    Thank you Debbie!!

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited December 2012

    A girl i met online when i was first diagnosed had IBC w positive nodes, and had been diagnosed right after she had her baby.  She is still doing fine after chemo, and must be at least 6 years out now, she was two years ahead of me :)

    Hang in there

    Laura

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  • markcleveland
    markcleveland Member Posts: 11
    edited December 2012

    Thanks Laura, those little glimmers of hope mean the world to me.

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  • debbie6122
    debbie6122 Member Posts: 5,161
    edited December 2012

    Bump

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Hi Mark

    I read your post.  I don't have any advice.  IBC is such an individual and unique disease.  I was in the chatrooms here, when first diagnosed, with another IBC lady named SillyMissyMoo.  Even though we had the same diagnosis, our disease took different tracks and we had different treatments.

    It sounds like your wife has developed skin mets??  Hopefully the radiation will kick its butt.  I think it is a very good sign that her tumor had shrunk in half by the time she had her surgery.  She is clearly responding.  And it sounds like you have good docs who aren't playing 'let's wait and see'.  They sound like they are being VERY agressive. 

    I did not develop skin mets but my friend Silly did.  That was back in 2004 and she is still kickin it on Pogo and Facebook today from what I can see.   So I think there is plenty of hope.

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

    Mark,

    Very sorry of your wife's diagnosis.  ibcsupport.org is a dedicated site to inflammatory bc that may help you.  I was diagnosed with ibc with bone mets in 6/09, but I'm estrogen + so I was able to take Femara. 

    It looks like your wife is on the correct treatment and I hope she does well with treatment.

    Terri

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  • markcleveland
    markcleveland Member Posts: 11
    edited December 2012

    Thank you so much for your response. I give you gals so much credit. See the emotional roller coaster my wife is going through really hurts and I'm stuck just giving her "moral support". God bless all of you, from the bottom of my heart...THANK YOU!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Mark, my heart goes out to you and your wife. I think its easier being the patient than the caregiver. You have a hard role.



    I really do think you have reason to hope. The tumor was half the size at surgery. That's good, it shows she is responding. The new skin spots are troubling for sure but your doctors jumped right on it with a new treatment. They are being aggressive. That's good. So many women with IBC get doctors who take a 'wait and see', its probably and infection and prescribe antibiotics for months until the disease is too far along by the time it is finally properly diagnosed.



    Stop reading the statistics that are out there for IBC. A lot of those stats are based on women diagnosed 10, 15, and 20 years ago. Treatments have come along way from that. Your wife is not a statistic. Like I said earlier, IBC is rare and seems to be unique for each person.



    The radiation will hopefully take care of the red skin spots. Many of us had the peau d'orange skin (dimpled like the skin of an orange) going into treatment. IBC is in the skin of the breast. There are many women who are surviving IBC today long term. I am not an anomaly anymore.

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  • markcleveland
    markcleveland Member Posts: 11
    edited December 2012

    Thanks for the response. It really means a lot. When I read this to my wife, I see a small weight lifted from her. The sad thing is, I realized I was causing some of the burden with trying to "fix" this. We've both agreed to pretty much give up on worry and focus on living day by day and being thankful for the time we have. Periodically I emotionally fall off this band wagon but eventually get back on it as my wife does also.



    I'm really surprised there hasn't been some common links here with IBC since its so rare. With such a small population, there has to be some link. My wife has been a ovo lacto vegetarian for the past 10 years. Before that she was a poor eating vegan. Now we have gone back to a diet that eliminates milk and really limits all oils(fats). She is getting up to about 10 min a day on the eliptical(nothing to intense).



    Do any of you have dietary/exercise suggestions?

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

    Mark,

    Walking daily will help increase your wife's energy levels &  help with any joint pain she may have.  We who are ER+ probably have more joint pain due to the medications we are on.   I juiced a lot during chemo, carrot, apple & kale.

    Terri

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  • markcleveland
    markcleveland Member Posts: 11
    edited December 2012

    We juice daily. And elliptical at least 4 times a week. My wife said its not good that she is hormone negative. I have no reason why...

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2013

    Hi Mark

    I'm probably the example of 'what not to do' as far as diet and exercise.  Before diagnosis, I exercised regulary, watched my diet and did all the right things like no smoking, drinking, etc.

    Since I worked full time during treatment, I was exhausted by the time I got home from work so I played the role of 'couch potato' until it was time to go to work the next day.  I had a job that required a long commute at the time so my work day would start at 6 am and I would get home around 7 pm.

    My first chemo regiment was 5 rounds of FAC every three weeks.  This did really weird things to my tongue and I usually got a good case of thrush each time.  My tongue would swell and was painful to eat or drink for about the last week of each round.   Also, my taste was off.  So I basically lived on Kraft Mac N Cheese and scrambled eggs.  With the help of 'magic mouthwash', I would slurp down either eggs or mac n cheese.  Anything that didn't require a great deal of chewing or tongue involvement.  As far as I can tell, the tongue thing is an unusual side effect.  I haven't met many others that had that issue.  But at least I knew the chemo was doing something.  :)

    The next regiment of taxol and taxotere was much easier but by then the diet/exercise pattern was set.

    Looking back the one thing I would do different was the exercise.  I wish I had kept walking.  By the time I was all done with all treatment, I was very weak.

    I think you are on a good path as far as diet and exercise. 

    The hormone negative thing has to do with being able to take post treatment drugs like tamoxifen, arimex to help prevent reoccurence and triple negative cancer is more aggressive.  For triple negative cancer, there is no post treatment anything.  We basically just get to 'watch and wait' but the farther out you get the less anxiety you have about reoccurence.

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  • markcleveland
    markcleveland Member Posts: 11
    edited February 2013

    To give all of you ladies an update. My wife had her mastectomy. Drains out, beat up and worn out. She is a trooper. She had skin mets, two spots appeared and around the incision. She went back on zeloda and radiation 2x a day for 6 weeks. That really stunk. She has been off everything for about two weeks. Yesterday a red spot appeared right in the middle of her chest on the skin. Waiting for biopsy results. Most likely is.

    This skin mets thing is weird. They did a pet scan 1 week after radiation and no signs of cancer. And now the skin appears again. Is this weird or what??!

    I'll keep you all updated. And please let others know of her and this topic if you have heard of similar cases. Thanks again and God bless you!

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  • kathypot
    kathypot Member Posts: 8
    edited February 2013

    Mark

    I posted back awhile ago asking if others on this list experienced redness to the breast while on adriamycin.  I experienced redness to my breast, but it did not have the characteristic,orange peel look and several providers were stumped by its appearance but it continued to progress.  I had a skin biopsy when I went for a second opinion at Dana Farber, which had a dedicated inflammatory breast cancer clinic. I was diagnosed with apocrine breast cancer which is an invasive ductal breast cancer and my skin was the same histology. I was told that this type of cancer is not as aggressive as IBC and is very very rare.  So, did you see the pathology reports for the skin? My surgery has been moved up because I am still progressing on chemo.  I think the worst thing about all of this is the fear.  I am so sorry that you and your wife are going through this at such a young age.  It sounds like others on the list know of long term survivors. I am wishing this for you and your wife.

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  • anonymice
    anonymice Member Posts: 532
    edited February 2013

    Mark, I am so sorry for all your troubles. i hope your wife is being treated at a facility that *specializes* in IBC, an IBC clinic. If not, it is it time to seek a treatment opinion at one of those facilities, as soon as possible - immediately if you can. MD Anderson in Houston and Fox-Chase in Philadelphia are two of them.



    About the PET, the cancer may have always been there but it was too small to show up on PET, which can't show individual cancer cells.

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  • jessozzie
    jessozzie Member Posts: 117
    edited March 2014

    Hi anonymice,

    I am also an IBC and  full response to chemo and i am 83 yrs old,i am NED now

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  • Kicks
    Kicks Member Posts: 4,131
    edited March 2014

    This is an over a year ago thread with the OP not being  'here' or any posts for more than a year.

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