skin mets

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kris123
kris123 Member Posts: 2
edited June 2014 in IBC (Inflammatory Breast Cancer)
skin mets
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  • kris123
    kris123 Member Posts: 2
    edited February 2009

    Hi

    I am new to this site.  I just saw my onc surgeon because I discovered a couple of red bumps along my scar.  My dr feels that these are skin mets.  I just finished my 8th chemo tx less than 2 mos ago and was going to start radiation tomorrow.  Now that is put on hold until these "mets" are removed next week.  I am scared, even though my dr said that the skin mets do not change my stage 3 status.  He says that the mets can be removed and I can continue on NED.  Has anyone else gone thru this?

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

    I never heard of skin mets being removed after your mast.  I was told that it could be move under the skin at the bottom level and to cut into the tissue would make it worst? I would demand a skin biopsy before in touched you.  This is the only way of knowing what's going on.  If it is mets...don't waste time getting back into chemo before it spreads.  I hope it is something else going on.  I know others have had places come on in this area.  Get a diagnoses first...

    Flalady

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  • downtownfan
    downtownfan Member Posts: 29
    edited February 2009

    Yes, please heed FlaLady's advice. My mom's breast surgeon did a mast before the chemo had done anything on her breast.... I am learning that this was possibly a HUGE mistake because cutting into the cancer tissue has caused it to spread like mad. She has mets all over her skin.

    She started out with a couple of bumps along the scar line and they did radiation. It did get rid of those mets but becuase she didn't respond well to chemo she continued to get more nodules.

    Currently, she is doing hyperthermia with low dose radiation, which so far is working on the skin mets.

    Please get it confirmed or see another doctor.

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  • Jessica29
    Jessica29 Member Posts: 36
    edited February 2009

    HI,

    I'm on my 3rd recurrence of skin mets along my scar line.

    At no time has surgery ever been suggested. Here in England my onc wanted me to have hyperthermia treatment as I have already had the max dose of rads, but unfortunatley we have no hosp in this country that has the necessary equipment to carry out this procedure. My onc was so frustrated by this!

    Please seek a second opinion.

    Jackie x

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    If you remember "ibcspouse" who has been a faithful poster here in the IBC threads, he needs you guys right now.

    Cam, his wife, had been NED since November.  Last week in a matter of hours, she developed mets to the skin!!!!!  They are leaving for Houston today to try and get accepted into a clinical trial at MD Anderson.  I dont know which trial, but evidently there is one that could offer her some hope.

    In case you are unaware, ibcspouse was unfairly banned for life from this message forum!  Those of you who know him, know that he could never do anything to deserve that!  BUT, you can find him here:  http://www.breastcanswers.com/bcforum/index.php and his new ID is "camsdh".

    If you guys could take a minute to visit the new forum, perhaps register and post to him in the IBC Forum, I know it would help him get through this very scary time.

    On ibcspouse's behalf, I thank you!

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  • ev1989
    ev1989 Member Posts: 22
    edited March 2009
    I also have an IBC reoccurance with skin mets. I agree with those that say surgery is not an option, this cancer lies under the skin in the lymph system. I would get a second opinion on surgery, it could be dangerous. My onc is dragging her feet on treating me and I am really nervous about how fast the skin mets are spreading. I did get some info on a topical treatment called Miltex, it can help kill cancer cells lingering under the skin but there is special paper work involved that has to be done by your doctor. I'm going to try it. The paper work you need is online at  ibcresearch.org  I have already received the maximum dose of radiation so may have to try chemo again but I worry that it may make my spinal mets worse (I would be happy to hear from anyone with advice on that). I'm thinking about getting a second opinion at the IBC clinic in MI or TX. One day at a time in Him.
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  • ev1989
    ev1989 Member Posts: 22
    edited March 2009
    What is hyperthermia treatment??  Thanks
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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited March 2009

    Aldara is a cream that works wonderfully on outer skin mets.  You do not need any special paperwork.

    Hyperthermia is being used to treat cancer in a couple different ways.  downtownfan mother is using hyperthemia along with rads to make the rads more effect.  Hyperthermia makes cells open up different due to heat.  Duke Univ is using hyperthermia along with chemo beads to treat local cancer in head and neck along with early stage breast cancer in early trials.  In alternative medicine the treat the entire body with hyperthermia. Univ Texas is using whole body hyperthermia with chemo in trials right now also.

    Flalady

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  • ev1989
    ev1989 Member Posts: 22
    edited March 2009

    Can you use Aldara while on chemo? Thanks for the reply. Is hyperthermia like a sweat lodge? What chemo did they use for your skin mets? Did it work? I want to keep it from getting to my port. Thank you FL lady.

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  • Jadai
    Jadai Member Posts: 182
    edited March 2009

    I came here looking for this specific topic and it was right at the top!  My mom had surgery three weeks ago and there are already some smally red bumps under the scar line.  If it is indeed skin mets will the radiation zap them out of there?  I am so frustrated that this has already happened.  I was just starting to think we were getting somewhere! 

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  • ev1989
    ev1989 Member Posts: 22
    edited March 2009

    Sorry to hear about it coming back so quick. They are trying Xeloda on me for mine as I've already had the max on the left side for radiation. The skin mets have gone down my side and over to the right side. My onc wants to wait on the Miltex until we see if this works.

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  • ibcspouse
    ibcspouse Member Posts: 613
    edited March 2009

    ev1090

    My wife, Cam has a recurrance of skin mets...down to abdomin around to right side and back.  Cam is begining A Clinical Trial to try to use more of a bio attack to prevent mets.  It sounds promising.  Her last PET earlier this month has shown no progression on Tumor or Lymphs, but the skin mets exploded over night. Hoping this works for her and works for all. 

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

    ev1989.

    You can use Aldara while on chemo.  Here is a list of my chemos also Cam mentioned above did these also.  ACT (T-taxotere), Gemzar Carbo Avastin, MDA trial for Aroplatinum, again GCA right now on Ixempra/Xeloda.  The last combo did work very well for a while.  After five months it has stop holding the skin mets at bay.  I will also be looking a bio attack or hyperthermia/with chemo next.  I hope hope to know something in a few weeks. Most of use do not get to have rads a second.  I really kind a bad we did my early in treatment with no real response.  My skin can to surface the same week I completed rads.   I really believe in the future us skin mets lady will be with hyperthermia. Ev1989 what chemo have you done? I really don't think Xeloda alone can control skin mets. I just curious is your doctor giving you kind of a chemo break? 

    Flalady

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

    http://www.freecollegevideos.com/college_videos_view/interview_with_md_explaining_hyperthermia_cancer_treatment_213222

    Here is the thread showing research and hyperthermia.

    Flalady

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  • selan1
    selan1 Member Posts: 3
    edited April 2009

    Kris.  I had six rounds of DEC in 2005 - May through July.  Had a mastectomy in September of 2005.  Came back in chest skin in December 2005.  Had six more rounds of chemo - Taxol and Carboplatin.  Went away and has not spread since.  I was also ER/PR and HER2 negative.     

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