Skin mets

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Tnbclady
Tnbclady Member Posts: 6

Anyone have skin mets.. I don't have mets I any organs just the chest wall.. was on gemzar it did not work now on eribulin.. was diagnosed 1 month after radiation TNB

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  • Meadow
    Meadow Member Posts: 2,007
    edited December 2016

    Hello, I am Triple Negative like yourself, I am Inflammatory BC, which presents in the skin. I have not had a recurrance, thank God. What is your original diagnosis? And was it recent? I know there are a lot of ladies with skin mets, hoping some will check in soon. Hoping things are going well on the new medication. Sending you my best regards!

  • Meadow
    Meadow Member Posts: 2,007
    edited December 2016

    Also I want to add, there is a very informative and active thread here, Calling All TNs, that I encourage you to pop in and introduce yourself! Lots of nice ladies, information, and support.

  • minimoocher
    minimoocher Member Posts: 62
    edited December 2016

    Hi tnbclady,

    I too have skin mets near the mastectomy scar. But I am not triple negative, I am Her 2 positive so am on Kadcyla chemotherapy now. All my other scans are clear. I have IBC which as Meadow pointed out involves the dermal lymphatic system and despite being on Herceptin and Perjeta treatment the cancer spread.

    I am responding to the new chemo so far. I am getting used to dressings and am on gabapentin now as had a lot of pain in my underarm region which onc said sounded like nerve pain.

    I hope you get a treatment plan sorted soon. I have a lot more energy now than on original chemo. You should go on the chat "There is life after a stage 4 diagnosis, really". I found it very helpful.

    Mini

  • Tnbclady
    Tnbclady Member Posts: 6
    edited December 2016

    Mini,

    I am getting very sharp stabbing pains in my breast where the skin mets are.. it just started since I began erublin.. I think it's because the chemo is working but I am it sure.. did you ever get this feeling.. it's like a electric dhock

  • Villiblu
    Villiblu Member Posts: 2
    edited February 2018

    Hello Ladies I just finished Xeloda July last year, I am triple negative, I did my exchange surgery November. I start having rashes around the implant, just found out my breast cancer spread trough the skin.I am devastated I had never heard about skin mets before. My oncologist is working on a treatment plan, he is doing also Foundation one. What was your treatment plan and where is a good clinic to go?

  • dancingdiva
    dancingdiva Member Posts: 475
    edited March 2018

    I finally found a skin mets thread.

    Have any of you heard of electrochemotherapy?

    This sounds so promising yet can't find any info on it in US or Canada

    d

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2018

    Hi, I was also recently diagnosed with skin mets - I am ER/PR positive and Her2 negative though. I had several lumps in different areas around my mastectomy scar, so we did three punch biopsies and they all came back as cancer! I was on AC chemo which didn't do much, and I've just started Xeloda which I hope will work better. My scans are clear, so no indication of distant metastasis at this point. The doctors are saying I need a skin resection of the whole mastectomy area with a skin graft. Has anyone else done that?

    There are surprisingly few people on these boards with skin mets it seems. I've never heard of electrochemotherapy, but I'll look that up!

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited March 2018

    It sounds like electrochemotherapy is not the first line of defense for skin mets right now, but I'm really glad they are working on something new.

    "If surgery and/or radiotherapy are no longer possible, this innovative technology can be used effectively for local tumour control....Electrochemotherapy is a promising method for the treatment of cutaneous and subcutaneous metastases in the local/locoregional recurrence of breast cancer in the palliative situation."

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC40692...

    Also there is the potential for it being used with immunotherapy sometime in the future!

    "Anti-tumor electrochemotherapy...is now implanted in about 140 cancer treatment centers in Europe. Efforts are now focused on turning this local anti-tumor treatment into a systemic one. Among the promising electrogenetherapy strategies, DNA vaccination and cytokine-based immunotherapy aim at stimulating anti-tumor immunity." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC49113...

  • dancingdiva
    dancingdiva Member Posts: 475
    edited March 2018

    Thanks button for that other little bit.

    I wish they would it. I've done rads

    But still didn't work 100%. What's a skin resection? They take all the skin out

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited April 2018

    Yes they remove a wide area of the involved skin - my surgeon did about 5cm out in all directions from the skin mets. Then they had to cover the area with a skin graft. This approach is not done in all cases, but in my case the Drs thought it was best.

    I'm being treated at a major NCI designated cancer hospital now - my local doctors couldn't deal with this adequately. I'd recommend that anyone with skin mets get an opinion from such a center. Best wishes to everyone dealing with this.

  • SierraPineapple
    SierraPineapple Member Posts: 47
    edited December 2018

    Hope everyone is fairing well :)

    Has anyone done electrochemotherapy? If so, what is the process like from deciding to do it till treatment is done? How big of an area were they treating? Did it work & how fast did you see results if it did? All the i formation I find is more clinical than informative for a person looking into doing this


  • dancingdiva
    dancingdiva Member Posts: 475
    edited June 2019

    Buttons, that skin graft sounds interesting. How big we're your mets?

    Sierra, I've been asking about the electrochemotherapy too and it seems unknown here in this side of the world.

    I have redness spreading across my chest slowly. This is the diffuse mets is showing in me. I still have tissue expanders in for years now, too long to explain why. Anyways, now I have skin erosion on one of the expanders. They sucked all the liquid out because the skin is so thin due to the cancer. Any one have this or heard of it?

    Thanks .

    D

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2019

    My tissue expander was removed at the time of my skin/chest wall resection. All the skin was taken, and part of my pec muscle, and the area was patched with a skin graft that is roughly 12cm x 16cm. I also did radiation and Xeloda, and am now on Zoladex/Aromasin since I'm ER/PR+.

    The area is not great to look at, but my skin mets have not returned. It's been a little over a year now. Hope everyone going through this is doing okay. It's a rough road for sure.

  • dancingdiva
    dancingdiva Member Posts: 475
    edited June 2019

    buttons, I'm assuming the skin graft was way bigger than ur skin mets?

    I've hard expanders in for 4 yrs now.The cancer spread to my skin looking like inflammatory bc and into the nodes. Radiation seemed to clear things. Then a biopsy with a knife not needle, soon afterward near my breast started the redness again. So I didn't want to cut again to really get the cancer going. Seemed to be stable but the redness is now growing and the skin is very thin. The expander is at a wierd angle, it's completely deflated and a corneris starting to prob go through my skin. The whole thing sounds gross.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2019

    Yes, the skin graft is bigger than the skin metastasis. Because of the way skin mets grow and spread, they had to remove the tissue about 5cm out from every lesion. It's definitely not the best course of action for everyone, but in my case I'm glad we did it.

    It's interesting that cutting into the area aggravated it for you - in my case the skin mets took off after my mastectomy surgery.

  • dancingdiva
    dancingdiva Member Posts: 475
    edited June 2019

    hey buttons, what do mean it took off after the mast surgery? I didn't have redness before mast either. Afterward a red spot just showed up. Is that what u mean? I always wonder maybe I shouldn't have had a double mast. In my case the red Started on the opposite side of original b

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited June 2019

    Yes, it was after my mastectomy that the red spots started forming and spreading. The pathology from my chest wall resection said the cancer was scattered across a 7cm area, but it was mostly along the mastectomy incision.

    I'm sorry you're going through this - have the doctors made any new suggestions?

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