IBC and spread

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

Anyone have insight.  Mom was diagnosed with IBC.  Pet scan came back and there was fluid around chest wall. Plueral catheter placed in my mom after 4 times getting lung tapped to drain fluid.  Her chemo isnt responding she hasnt got a consistent dose of chemo and i feel like there taking there time with her.  Isnt IBC aggressive and moves fast.  So they test fluid and it has cancer in fluid not good they say they can only try to control cancer her breast is still the same and fluid keeps coming back. Doctor acts like it isnt spreading but i am thinking without chemo in her for three weeks now it ha smoved other places..,Can anyone shed some light possibly.. My name is Dave 35 from iowa

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  • lexi4
    lexi4 Member Posts: 1,074
    edited December 2008

    Hey Dave,

    Is it possible to get your mom in to see another breast specialist? IBC is aggresive and needs to be treated as such. Is she on any hormomals or herceptin? Please let her know that my thoughts are with her.

    Take care of yourself, too.

    Lexi

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  • desdemona222b
    desdemona222b Member Posts: 776
    edited December 2008

    I have a really good friend who skipped 3 weeks of chemo because of port issues - it isn't uncommon.  The surgeon who inserted the port in the first place has to fix it - it can't be done by people at the clinic or hospital.

    I don't guess I've been much help, but I saw the other post about the port issues.

    My prayers are with you and your Mom. 

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  • ddefino
    ddefino Member Posts: 17
    edited December 2008

    She finally got in today and had chemo same kind called Navelbine i think gave her a lower dose.  I take her next Tuesday we will see if white blood count build back faster an dsee if the fluid she has to get drained everyday will be less with chemo.  She is on oxygen at 2 liters at all times.  She never had a breahting problem ever i am concerned about that.  She is weak and can't walk too far without being exhausted. is the chemo making her weak or is the cancer, or fluid in chest area.  I never seen her like this so I am confused.  She had IBC 8 years ago but it never spread this is a new cancer.  The surgeon who puther port in told us he couldnt believe she survuved the last one.  That is scary.  When he put the port in he said he got it int here but he couldn't go any further up cause somehting was blocking up there like a tumor he commented.  Why isn't the onocologist worried about this.  Seems strange to me.  

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  • pam2
    pam2 Member Posts: 5
    edited December 2008

    I was diagnosed with IBC in Sept. My onocologist started me on Adramycian and Cytoxin.

    I've done 4 treatments.  3 days before xmas he is going to start me on Taxotere and herceptin.

    I'm scared about the side effects of taxotere.  What treatments are the best for IBC.  How do

    you know if they are right.

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  • ddefino
    ddefino Member Posts: 17
    edited December 2008

    Well i am sorry to hear that u have IBC is it just in breast or has it spread?  How are your treatments going is the chemo working?  I hope so god bless

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  • pam2
    pam2 Member Posts: 5
    edited December 2008

    Treatments seems to be going okay so far. I am tired but I keep going.

    I have 2 kids ages 15 and 7.  I've lost my hair but still have my eyebrows and

    eyelashes.  I just got off the phone with MD Anderson.  I was hoping something

    new came of the convention they had over the weekend.  1st ever inflammatory breast

    cancer convention.  They hadn't heard anything but would get back with me.

    They say they do the same treatments my doctor here in central illinois does.

    I pray everyday and also trying to add the natural stuff hoping for a miracle.

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  • Teacup
    Teacup Member Posts: 3
    edited December 2008

    Hi Dave,

    I just hopped on this board. My Mother has been fighting BC off and on since 1987. YES, you read that right....1987. Anyway, last Dec of 07 she had a pleural effusion and needed fluid tapped many times. They finally did a Thorencetisis (sp). Basically they put talc powder in the lining of the  chest wall to stop fluid build up. It is a farily common procedure and it worked! No more fluid, no more labored breathing and her lung which was nearly collapsed reinflated. So you may want to ask your Mom's Oncologist about this. Hope this was helpful. Keep praying! Blessings, Teacup

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited December 2008

    Pam2,

    I attended the conference in Houston.  It was interesting, with most emphasis on the future use of inhibitors on the molecular level. The things that got my attention was Tumor's that don't respond or continue to grow during chemo..that they are having an over 80% success rate with concurrent radiation and xeloda.  The radiation is a special 3D multiple strength process at MD Anderson.  The other thing that was exciting is a Vaccine trail, it seems to be very promising. 

    As for as current treatment, there seems to be a movement to more aggressive treatment to get a complete clinical response before surgery.  The importance of PET/CT scans during chemo to monitor how chemo is doing and if changes are needed.

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  • Jadai
    Jadai Member Posts: 182
    edited December 2008

    Hi Pam,

    My mom is doing taxotere, cytoxan and herceptin.  She is hardly having any side effects other than being a bit fatigued and of course losing her hair.  It has really reduced the redness and swelling so we are thrilled.  I know it is different for everyone but I hope that makes you feel a bit better.

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  • tksaylor
    tksaylor Member Posts: 1
    edited December 2008

    Hi Pam,

    I was diagnosed with IBC in March. Unfortunately mine had moved to my lungs but I went through 6 rounds of Taxol and Herceptin which really was a God send. My lungs were clear and nearly all of the IBC was gone in my left breast where it all started. I got my double mastectomy done in September. My oncologist ordered four more rounds of chemo but with Cytoxin and Adriomyacin this time. Unfortunately my IBC is back but in my chest wall now, just waiting to get a pet scan to see how bad and where it has roamed to now. My biggest side effect of the Taxol (Tamoxifin) was the neuropathy (numbness) in the hands and feet. After being off it for a while my hands are fine but my toes are lasting a little longer. I too found that my doctors are using the same drugs that MD Anderson would use as well. I'm in California but I'm an Illnois girl myself. (southern)

    Hope some of this info helps even if it's just the smallest amount

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2008

    Greetings, Pam

    I was diagnosed with IBC in August. I am blessed that a sentinel node biopsy showed it had not spread. I started chemo with 4 treatments of adriamicin and cytoxan, which greatly reduced the redness and swelling and shrunk the tumor I had with it quite a bit. Now I am on Taxol and will have the last of 4 treatments this Wednesday. My onc and breast specialist are really encouraged(as am I) because my breast looks and feels almost normal, only a slight discoloration. I will have a mastectomy in January followed by radiation to finish the job.  then 5 years of Tamoxifen and watching to see if there are any recurrences.

    As for side effects, I experienced hair loss, nail discoloration, fatigue, nausea and diahrea with the AC. The Taxol so far has caused numbness in my hands and feet, plus every time I have gotten it so far, my white blood cell count has dropped to the point where I have been hospitalized with high fevers. I am praying that this does not happen with the last treatment as I would really like to be home for Christmas.  

    Since I was diagnosed with IBC, I have gotten engaged to a wonderful man who tells me he is in love with a woman, not body parts. We will be married in March and cherish each day that we have together. 

    Bette 

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  • Kristina_Mi
    Kristina_Mi Member Posts: 6
    edited December 2008

    Hi,

    I am still praying for a miracle for inflammatory breast cancer. My cancer has spread to my spinal column, pelvis, ribs, clavicle, and now is disfused through my Liver. This is so scary I have two children 9 and 2 I just want to live to see them grow up but realty is I probably will not.  This hurts me everyday and is so unfair to my kids. I can sympathize with anyone in this situation. It is a battle we must endure but not surrender to. We must fight as long as we can that is possible. The real sucky thing is I am waiting for a approval from my insurance company for the drug Avastin anyone familar with this drug, some of the side effects when added with Taxol.

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  • hopefulB
    hopefulB Member Posts: 6
    edited January 2009

    Hi ibcspouse, I was happy to hear about the conference.  I just finished radiation combined with xeloda, so this really gives me hope. 

    I have not have surgery yet, the cancer was too big and did not respond to neoadjuvant chemo - 2 rounds of AC followed by 4 rounds of TAC.  Did you hear much about gene testing for tumors to predict sensitivity to chemo?  I will probably have surgery in about 3 weeks and wanted to know what else I can do before surgery to improve my changes.

     Take care,

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  • ddefino
    ddefino Member Posts: 17
    edited January 2009

    Hi all here is an update of my mother.  she is taking navelbine chemo like a half dose becasue her white blood cell would not recover and chemo couldn't be given on a regular basis because of this.  She got a tube put in her to drain the fluid that was in her chest wall she got a plueral cath in her a nurse come everyday to drain fluid out.  Now that the chemo is working the fluid has basically stopped.  In three weeks she is getting a cat scan then we see dr again.  I am optimistic with all this due to the face he says she is terminal and that he doesnt want her to go back to work told her to jsut spend time with grandkids and her kids and to enjoy life.  In her chest area it has mastisize and basically it will enver go away he said.

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  • NYCarol
    NYCarol Member Posts: 347
    edited January 2009

    Big Dave, don't give up hope.  Your Mom could live for a long time if the chemo is now working and her fluid retention is disappearing.  Be hopeful that her scans show considerable improvement. 

    Carol

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  • ddefino
    ddefino Member Posts: 17
    edited February 2009

    Let me ask anyone what is the difference between a PET scan and a cat scan

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  • ev1989
    ev1989 Member Posts: 22
    edited March 2009

     From what I've been told, the PET scan is more of a whole body scan and uses a radioactive sugar solution. Cancer cells are quick to take up the sugar and so shows up as red on the PET scan. I have had 5 of these.       One day at a time.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    Pet scan does look at the whole body.  But is really does a good job at looking at soft tissue/skin.  Now days you can have a PET/CT Scan and you get it all in one.  I have these done every three months.  I never really asked how well you see skin mets with a CT Scan.

    Flalady

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