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IBC DIAGNOSED, LETS SHARE OUR STORIES!

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  • jadai
    jadai Member Posts: 33
    edited November 2008

    Thanks for the responses.  Yes, she seems to be having bone pain but I am assuming that is from the mets.  She asked me to do her shopping for her today and I can happily say that her appetite is definitely back!!!!  I will dance with you Diane!

  • ebann
    ebann Member Posts: 1,474
    edited November 2008

    Diane I will dance for you as well.

    Jadai, yes the neulast shot causes joint/bone pain and flu like symptoms. My onc nurse recommended for me to take a claritain and alieve for 3 days. It really does help. Maybe you can attempt to use it next time. You are to start taking them the morning of your neulasta shot.

    In God's Grace; Elizabeth

  • DianeE
    DianeE Member Posts: 30
    edited December 2008

    Start the dance, NED has arrived.  Nothing on the scan but a cyst on the ovary that was not lighting up the scan.  Yeah.  Also told that I will start zometa as a prevention in the next 6 months so that is kind of exciting to hear of drugs to keep away mets.  Happy Holidays everybody.

    Diane

  • jadai
    jadai Member Posts: 33
    edited December 2008

    Yay Diane!  I am so happy for you. 

  • shrink
    shrink Member Posts: 131
    edited December 2008

    Every time I hear news like this, I feel encouraged.  Go Girl!

     Marian

  • PLUTZ
    PLUTZ Member Posts: 1
    edited January 2009

      

      I went to the dr. yesterday and she told me there was a good possibility that I have IBC. She did 2 biops and I'm scheduled tomorrow for an MRI, CAT scan and bone density tests. I am terrified. I've already been told I would be starting chemo by the end of this month annd getting a mastectomy sometime after. I'm trying to be positive about the outcome, but I am scared. I pray alot. My church is praying for me and I have support from my husband and sister. What else can I do to feel better about this?

  • jadai
    jadai Member Posts: 33
    edited January 2009

    Hi Plutz,

    I am sorry that you have to be here.  My mom was diagnosed with IBC AND leukemia in September and was so scared.  The first few weeks were so hard for her and for all of us really.  Well, she has had three rounds of chemotherapy and about 11 rounds of herceptin and her breast is responding tremendously.  The redness and swelling are gone and her oncologist is thrilled with the results.  She is presumably stage IV with mets to the bone but they cannot be sure because of the leukemia diagnosis.  Her 1st oncologist, who I personally fired, wasn't even considering surgery, had this gloom and doom attitude...terrible.  Her new oncologist, at a wonderful hospital in Providence, is fantastic.  So, I guess with all of this rambling I can say it is ok and normal to be scared but please know that you will feel better once treatment has started.  It was such a relief to get everything going.  Also, find an oncologist with a positive outlook, it makes all the difference.  Finally, this is a great place to come.  You are not alone and you will find tons of support and information here.  I have learned so much here that has helped my mom and me so much.  I know that I am not in your shoes but I am the primary advocate for my mom and am on this site daily.  Please take care and let us know what happens.  Again, the people here are so wonderful and if you need any information please let me know.  I have done a ton of research on just about everything you can imagine!

  • Nancyg
    Nancyg Member Posts: 2
    edited January 2009

    My name is Nancy and as of this minute I am not sure if I have IBC but everything seems to point to IBC.  Waiting on test results.

    In April of 2008 I fouond out I had IDC in  my right breast.  I had three lumps the largest of which was 1.7 cm.  I received a lumpectomy in April followed by radiation which I completed at the end of August.  I had an Oncotype test done which showed only a 7% chance of reaccurrance in the right breast so no chemo was recommended.

    In October/November my right breast started to itch very badly and by the middle of December started to get very red and swollen around the incision and within days got larger and extremely tender with pains shooting throughout my breast.  The next step was a very hard mass which felt like the size of a golfball and that hard.

    Went to see my Oncologist who told me to stay calm and said I needed to go through 2 weeks of antibiotics to make sure it was not an infection before we went further.  She did not feel any problems in my lymph nodes.

    Am presently on my second week of antibiotics and not much change.

    Has anyone else had this happen after a lumpectomy?  I can't find anything on line which fits my particular situation.  I am a 63 year old woman who is obviously post menapausal and everything I read says IBC happens mostly to younger women.

    I can't believe I am going through this again.  Any information would be so helpful.  I don't know how I would have gotten through this the first time without you and am so thankful you are still here.

    Thanks for your support.

  • mary1942
    mary1942 Member Posts: 1
    edited January 2009

    Jan 9, 2009

    Hello Ladies.  I've never done ANYTHING like this before - not IBC, nor shared a story on line.  I'm Mary Elizabeth, age 66.  I was diagnosed on August 27, the same day my greatgranddaughter we born.  What a shock.  I felt EXACTLY like I had mastitis, and except for my age would have insisted on that - my family docoor did not have any definite thing to say about my condition but I could tell she was extremely concerned.  I had diagnostic mamography and ultrasound immediately.  The Radiologist really was upset that I had not been seen eariler - but you know - there was no earlier - the red, hot skin and HUGE tumors simply showed up.  I have always had large, dense, breasts, and I do self exams religiously and this miserable condition went from nothing to what I described above in less than a month.  I was sent to a sureon, THANK GOD for his wisdom and he said no surgery now and diagnosed IBC.  I have just completed my 5th chemo treatment - three drugs given on a three week cycle - the combo is called ATC and I'll give you the names of the drugs if needed.  I see the surgeon again on January 16th to determine if he wants more chemo or will schedule the operation now.  I will have bilateral mastectomy.  The cancer has invaded the fascia and is in the lymph nodes behind my right clavacle and under both arms.  I have had and MRI, a PET, a MUGA, a bone scan, both mamgraphy and ultrasound guided biopsies  andsomething else I can't recall just now.  The chemo has been very rough, and I am worried about how weak I've become in terms of surgery recovery.  Are any of you old like I?  I have not discussed reconstruction with the surgoen.  I am 5'9" and weigh 225 pounds - I don't know what that means in terms of surgical recovery.  God bless all of you for being willing to tell your stories - I think IBC does not get nearly to coverage it should.  Peace, Mary Elizabeth 

  • ladybug22
    ladybug22 Member Posts: 2
    edited January 2009

    I have i b c  dx aug of 07  my age is 54. i am still taking herseptin every 3 weeks . all is well god is good.

  • rosied51
    rosied51 Member Posts: 21
    edited January 2009

    Has anyone been diagnosed but in the beginning all tests came back okay. The reason I have all the symptoms but  they keep insisting my breast is not inflammed enough nor is it enlarged enough.Mt right breast and arm & armpit are now in so much pain.The pain in my upper arm goes just above my elbow

  • Nancyg
    Nancyg Member Posts: 2
    edited January 2009

    Hello everyone.  Update to my scare of the month.  Was put on antibiotics on Tuesday and told if any changes call right away.  By Friday my right breast was more swollen and much more red and hot as well as having a lump the size of a cherry pop up right above the nipple.  I was getting shooting pains up my chest and called my doctor at Mayo.  She had me come right in and after checking said it appeared to be an abcess and to go home and put warm compresses on it.  She asked me to wait a few minuties and when she came back she said before letting me go she decided to call the surgeon who did my lumpectomy and the surgeon told her to bring me right over.  She took one look at me and said she had to open up the suture from the lumpectomy and clean out the abcess.  I don't think I ever felt such pain.  Afterward she packed it and sent me home for one week, told me to continue the antibiotics and change the packing  once a day.  I asked if it could be IBC and all she would tell me is we will have to see. 

     Has anyone had anything like this happen?

  • bettelou68
    bettelou68 Member Posts: 151
    edited January 2009

    Hi! It's been a while since I posted on this board.

    After 5 really rough months of chemo , AC followed by Taxol, a mammogram showed that my tumor is the same size it was at diagnosis, and my breast is still discolored and painful. So I lost my job, experienced repeat hospitalizations for neutropenia and suffered neuropathy in hands and feet for basically no results. At least it did not keep growing.

    This coming tuesday, 1/20, I will have a radical left mastectomy with axillary dissection. I had a negative SNB in August, but my surgeon will check all the nodes just to be sure because the response to chemo was so disappointing.

    As suggested elsewhere on these boards, I took "before" photos of my ibc breast. It looks really nasty. I had been grieving about losing my breast, but now that I've seen the pictures, I just want it gone. I am praying very hard about the pathology report.

    Right now the plan is seven weeks of rads as soon as I can tolerate it. Hopefully the path report will be good, and there will be no more chemo, but the onc won't make any promises.

    I am being treated at the AVon Foundation Breast Center of the Sydney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore. I went there after two moths of being told that I had an infection at home. They diagnosed the ibc quickly and got me into chemo. My body just didn't respond as hoped.

    My DD and husband live in Baltimore, so I will be staying with them until the major post-op appointments are over and drains removed. I'm taking my laptop, so I will stay in touch

    Bette 

  • ibcspouse
    ibcspouse Member Posts: 14
    edited January 2009

    Hi,

    Cam had her PET/CT and brain MRI yesterday, met with the doctor today, and still no apparant signs of tumor anywhere.  Her tm's have fallen futher into the normal range.  As I have said before, it has not been a good 11 months of chemo...9 different kinds with multible changes to optimize her stage IV treatment.  She still will not have a MRM or radiation.  She will continue on Navelbine in hometown, and go back to MD Anderson every 9 weeks for evaluation. 

    Bette, I hope and pray that you have good clean margins and path report. 

  • Caseysmom
    Caseysmom Member Posts: 70
    edited January 2009

    ibcspouse:

    This is great news! 

    Laura 

  • bettelou68
    bettelou68 Member Posts: 151
    edited January 2009

    ibcspouse: Wonderful news!

    This promises to be a long weekend for me as I tie up loose ends at home and prepare for my trip to Baltimore on Monday. Once at Hopkins, I know I will be in the best of hands. I have accepted that this mastectomy is necessary to get rid of the ibc.

    Right now my ibc breast is red, warm and painful. I am concerned that it has been too long since the end of chemo (4 weeks) and that the cancer has started to grow again. It is all in God's hands at this point. So I will rest in that knowledge, knowing that many prayers are being said for me as I prepare for Tuesday's procedure.

    Bette 

  • ibcspouse
    ibcspouse Member Posts: 14
    edited January 2009

    Laura, thank you.

    Bette

    I know you are in great hands, but one thing that you might want to ask about.  I was at the International Conference on IBC in Houston in Dec.  One of the things that is new that they are having great results with on some chemo resistant tumors is doing a mix dose radiation and xeloda at same time.  This has I believe given a very high success rate of srinking the tumors so a MRM can be done with clear margins.  If you would like to ask the Dr about this, I have a copy of the abstract around here somewhere and can copy and paste it.  Or your Dr's could call Dr
    Wendy Woodward at the Breast radiation dept at MD Anderson.  She is the one doing the research.   It is just an additional tool to use, but I'm sure at Hopkins, they will know best

    again prayers for you

  • FloridaLady
    FloridaLady Member Posts: 158
    edited January 2009

    ibcspouse,

    Great to hear Cam's scan's are all clear!  I get my in two weeks... If all is well, I will stop Ixempra for a few months and just do Avastin with Xeloda while my neuropathy hopefully becomes more controllable. My onc. wants to go back to Ixempra in a few months.  When I stop responding to Ixempra we will do Navelbine.

    Flalady

  • ibcspouse
    ibcspouse Member Posts: 14
    edited January 2009

    Flalady

    I will have my fingers crossed as well as toes and eyes, for you,  It's time that your good news becomes a long long story.  Navelbine seems to be a good choice, the side effects are very doable.  With cam, its only one day 2 days out from treatment that she gets hit with fatigue and some stomach distress.  But each week, she is getting stronger and more "healthy".  Her body is finally kicking much of the toxicity of a the past chemo's.  I do believe that most of her good news came from the Ixempra, just hate how hard it was on her.  I thanked her onc for what he has done so far and when I said  he seems determined to either "cure" her or kill her, he only smiled.  You know how hard it is to go thru 9 diff chemo's, In Cam's case it was in only 10 months.  I know what statistics say will happen in the future, but it is the strength and courage of you and others that allows us to appreciate her good fortune now with out living in dread of tomorrow.  We know that if another fight has to begin later on, the trail has been marked by you. 

  • FloridaLady
    FloridaLady Member Posts: 158
    edited January 2009

    ibcspouse,

    Bless you and Cam. We are in this together!

    Flalady

  • lencass
    lencass Member Posts: 1
    edited January 2009

    Hi everyone, I'm so glad I found this thread.  I've never written this whole story out .. here goes.

    I had had my daughter in 2004 and had a couple of infections while nursing.   I developed a hard area in my right breast - not a lump more like a small oval shaped area of hardening. Went to the doctor who said not to worry.   Developed pain in the breast in 2007.  Doc ordered a mammo and a consult with a hospital breast clinic.  Did the mammo but about a week later the pain got ridiculous and my breast became red and inflamed.   In between meetings at work i ran to a walk in clinic and doc sent me to emerg suspecting an abscess.   Emerg sent me for ultrasound and found an abscess which they drained with a needle on the friday night.  Monday morning I was back to dr. with pain again.    He called in a surgeon who brought me in as outpatient and surgically opened me up to clean out abcess.   2 weeks later I went to breast clinic where they said I looked good.  I asked specifically if we needed to investigated why I got an abcess and what caused the problems and what about the hard area.  Answer was "it just happens'. 

    Fast forward 1 year to April 2008.  I was 34 years old and had just moved to a new city.   My breast became painful again and a new hard area had appeared.  I went to a doc who immediately sent me to a breast cancer specialist.    I was quickly with breast cancer and started neo-adjuvant chemo.   I had a mastectomy for my right breast in September.  I wanted to do both breasts but because of chemo they thought it would be too dangerous and will wait 1 year to do the left.  

    What's a little strange is how they diagnosed my IBC.  When arguing for the double (which I realllly realllly tried to get done) I found out that they hadnt done a skin biopsy but were using the skin dimpling and redness to define me as inflammatory.  One of the nurses said that was strange since it could have just been the tumour pushing against the outer wall of breast.    I was crazy frustrated with this but too late to test concluvisevly after 4 rounds of chemo apparently.

    I'm happy with the doctors and can still find humour in the conversation I have everytime I have to do a history with a new doc.  Last week the radiation doc questioned me on why I never had a biopsy in 2007.  I told him it wasnt deemed necessary since mammo was clear (strangely I felt like apologizing - gave me the giggles - he must think I'm a little nuts).   A year after my mammo and clinic visit my tumours were measured at over 10cm.   His comment was that his threshold for biopsy is a lot lower.  "AMEN"  I say - biopsy everyone who you even think might have this. . 

     Finished the rest of my chemo and am now closing up with herceptin and radiation.     I'm just a little bit of a control freak so I constantly talk myself down and will eventually get used to the wait and see strategy.   I can now say how lucky i am to live where I live and have the doctors I have.   I managed to get on a trial with great results and am very hopeful. 

    Thanks so much for this.  Your stories and knowledge have given me strength. 

  • bettelou68
    bettelou68 Member Posts: 151
    edited January 2009

    Well I came home from the hospital yesterday. The nursing staff at Hopkins were fantastic: attentive, informative and compassionate.

    Tomorrow I get to take a showerSmile.

    I am not experiencing much pain unless I lean frontwards, which for some reason hurts a lot. I have been up most of the morning, but am now going to take some narcotic and rest. May have overdone it on the computer today.

    I had been really anxious about viewing my incision, but it does not look that bad, because there was enough skin there to fill the TE to 100cc. So on the Mx side, I actually have a tiny little breast. Compared to DDD on the other side. When rads are done, I will have a reduction done on the "healthy" side. Of course the recon on the ibc side has to wait quite a while.

    They checked the remaining nodes on the ibc side, but did not find any enlarged. This is good?

    On 1/28/09 I get the final pathology report.

    Bette

  • ibcspouse
    ibcspouse Member Posts: 14
    edited January 2009

    Bette, 

    I am glad you are doing so well. 

  • CanadianCare
    CanadianCare Member Posts: 1
    edited January 2009

    Hi everyone!  My mother was diagnosed w/ IBC in 2005; she is still on chemo and wonders if anyone has any comments on Miltex.  The German results are favorable.  Thank you!

  • bettelou68
    bettelou68 Member Posts: 151
    edited January 2009

    Yes, ibcspouse, I am doing well and can't wait to get the path report and find out if the margins were clean, etc.

    Now it is time to make lunch, which I can still only do one-handed. After that, a nap, as I have been up all morning. Today was notable in that I had my first post-surgery shower, plus started gentle stretching exercises for mobility in my arm. I took the exercises slowly. There was some pain, but it was doable.

    It is reassuring to look down at my chest and no longer see a large, discolored and mishapen breast with cancer in it. That is what I try to remind myself when I am presented with my "uneven" view of things.

    Bette

  • FloridaLady
    FloridaLady Member Posts: 158
    edited January 2009

    I research and asked my doctor about Miltex.  He said this burns very bad when applied.  You can only get it in the US for compassionate care through a request for the pharm. company.

    I was told about Aldara by someone online here.  This is kind of the same kind of cream. This is only used on open wounds.  You can only use it in a place the size of a quarter daily for five days ever other week. This did a wonderful job in healing and closing up my open wounds.  I was surprised how fast.  Just remember it only treats the top few layers of skin and not all the way down to  bottom layer. I would recommend it to anyone.

    Flalady

  • bettelou68
    bettelou68 Member Posts: 151
    edited January 2009

    Pathology report today ---- CLEAN MARGINCS, NO LYMPH, NIPPLE, SKIN OR VASCULAR INVOLVEMENT AT THIS TIME.

    Going to onc on Monday to discuss nexxt phase of treatment.

    Praise the Lord!

    Bette

  • ibcspouse
    ibcspouse Member Posts: 14
    edited January 2009

    Bette, you said it best, Praise the Lord.  I am so glad for you.

  • FloridaLady
    FloridaLady Member Posts: 158
    edited January 2009

    Bette,

    God is good!  So happy for you.

    Flalady

  • yuyueno
    yuyueno Member Posts: 35
    edited January 2009

    Hi, Everyone. My name is Yuyu.  I am not sure if I've posted here before.  But, I just wanted to say I am so glad for Bette! 

    I am going through the similar path.  I was diagnosed with IBC in Aug 08 and have been doing different chemo with herceptin up til now.  The results from chemo have been not so great with some shrinking and growing back here and there.  I just finished my last neoadjuvant chemo, and am awaiting for a surgery next month. 

    I will have single mastectomy with no immediate reconstruction.  Being 34, it is hard to imagine not having my right breast, but if it means saving my life, then I am okay.  I am praying for clean margin and no lymph node involvement as everyone does.

     I hope to come here often so that I can be connected with you all and support each other :)