Fill Out Your Profile to share more about you. Learn more...

Skin mets

bethu77
bethu77 Member Posts: 263

My breast cancer has moved to my skin. I have had radiation to my chest and my back. The skin mets have returned. Some are small bumps and others are huge places that seem to be spreading. The radiation did not work. It only caused a lot of pain for me and loss of my skin. I was taking Xeloda with the radiation. In September, I started taking Navelbine. This caused low counts so I had to stop. I had two treatments of Gemzar but my platelets were low so I had to stop that for two weeks. Is anyone else dealing with skin mets? What medicine and/or lotions are you using? How are you coping with these mets

«13

Comments

  • steelrose
    steelrose Member Posts: 318

    Beth,

    I'm here! As I mentioned in the Faslodex thread, I've been dealing with skin mets on and off since 2013. Right now I'm doing well on Faslodex, but last Jan. I had radiation to a large area on the breast. I completely understand your frustration and misery! The doctors kept telling me not to worry, the skin mets won't kill me... but I'd like to see how they would feel having to deal with the visual reminder every day! As far as lotions go, you want something soothing that doesn't further irritate the area. I use Cetaphil intense moisturizer and cleanser. It doesn't make the mets disappear of course, but it is a good gentle product.

    Did your mets reappear in the radiated area or outside of it? It sounds like you just need that magic drug that will stop the spread. I hope that is right around the corner for you!!

    Rose.

  • bestbird
    bestbird Member Posts: 232

    I am sorry to hear that your skin mets are being stubborn.  Here are a few notes that perhaps might worthwhile to discuss with your doctor.

    I hope the mets disappear quickly and forever!

    With regard to skin metastasis:

    A topical therapy called Miltex may be helpful if it is available.  From
    http://link.springer.com/article/10.1007/s002800051114?LI=true 


    Another therapy called PV-10 may help (from  Rose
    Bengal) may be helpful From
    http://www.pvct.com/pv10breast.html

    In much higher concentrations, the active medication in Voltaren has been used for skin cancer. One person
    wrote that Voltaren gel helped minimize skin mets since its anti-inflammatory
    effects are also good for skin mets.

  • bethu77
    bethu77 Member Posts: 263

    What do your mets look like. Mine are like blisters, scabs and bumps. They have spread and my onc is going to treat me with carboplatin/taxol beginning on Tuesday. I really hope it works. I am miserable. I can't keep my hands off them either. It takes a great deal of effort to not touch them. Any advice? I am going to start wearing gloves when I sleep and during the day.

    Thanks for everything you have given me so far!


  • steelrose
    steelrose Member Posts: 318

    Beth,

    The gloves are a good idea if you can't keep your hands away from them. Mine were a bumpy red rash. If I scratched them too much they'd get very irritated. It's important to find a soothing lotion, and to try very hard not to irritate them any further. Mild soaps, and no wash clothes, just hands to gently cleanse.

    I hope the Taxol will help to clear things up. I'm sorry you're miserable! Wish I had more advice for you... just know that I'm thinking of you, and please keep me updated!

    Rose.

  • bethu77
    bethu77 Member Posts: 263

    I will and thanks. I started carboplatin/taxol today. New regime begins today

  • steelrose
    steelrose Member Posts: 318

    Yay, Bon! Your tips were so helpful to me when I first developed the skin mets. Glad you chimed in here, and I hope you're doing well.

  • redwolf8812
    redwolf8812 Member Posts: 580

    Hi, Beth. For what it's worth, I developed skin mets on my cancer breast while doing neo-adjuvant chemo. Adriamycin and Cytoxan wiped them out, thanks be to God. By the time I had my double mastectomy (I was stage 3C at that point), the cancer was completely dead IN and ON the breast.

    Prayers for you and yours,

    Penny

  • mammalou
    mammalou Member Posts: 293

    I have a question... Are you more likely to get skin mets if you had dermal lymphatic involvement in your original diagnosis?

  • bethu77
    bethu77 Member Posts: 263

    Thanks for the info Bon and everyone. Has anyone else had dealt with fungating wounds?

  • bethu77
    bethu77 Member Posts: 263

    Thanks for all the help. My sores are big and open. They are spreading and they hurt. My onc said IBC and metastatic BC. I am praying for healing and relief from pain and no more spreading. I wish I had not had radiation last summer. I spent it burned from rads and still they came back. I am a bit angry but trying to stay positive. These boards help me so much. Thank you all for the help and encouragement

  • mtmom
    mtmom Member Posts: 9

    I'm also dealing with skin mets in the radiation area. I was reminded of a product I used when I was going thru radiation. It is a cooling pad made by Lindi. Lindi has a whole product line for skin care for chemo and rad patients. I liked the cooling pad because it helped with burning and itching. It lays like a second skin and also has aloe vera. The website is www.LindiSkin.com.

    Blessings,

    ~Mtmom

  • amarantha
    amarantha Member Posts: 330

    Bump. I'm looking for more information on skin mets, and am sort of surprised there isn't more on these boards. Is it so infrequent ? My original breast cancer has metastised to the skin in the ex-breast, which despite treatment, has continued to spread and densify and travel toward the remaining breast. I'm being treated with Ibrance and Faslodex for metastasic breast cancer (new treatment after ten months on Afinitor and Aromasine). We'll see if it makes a difference. Meanwhile I'm looking for peeps with the same or similar experiences to share with. Anyone home ?

  • LoriCA
    LoriCA Member Posts: 671

    This may only apply to open/oozing wounds - IBC caused a large open and oozing wound on my breast that grew larger every day when I was first diagnosed and absolutely terrified me. I had a wound care specialist in the hospital who initially dressed it with silver "rope" wound dressing, not the most fun stuff to use if you are caring for it yourself because it absorbs all of the nasty stuff and has to be picked out of the wound when you change your dressing, but it did start the healing process. After that I was switched to Silvasorb Gel (requires a prescription). I would gently flush the area with a mild saline solution, apply the Silvasorb, and cover with a loose bandage. Not sure whether to credit the silver-based products, the chemo (taxol), or a combination of both but it's almost completely healed now.

  • amarantha
    amarantha Member Posts: 330

    Oh Gosh, LoriCA, so glad to hear that it is almost completely healed ! Thanks for responding to my bump. I think I know what Silvasorb Gel is, I have a couple boxes from an old operation hanging about in the closet. Oh yes, very icky. We got to have the IDE (traveling local nurse) come and do all the icky part. Was the wound considered a skin met ?

  • LoriCA
    LoriCA Member Posts: 671

    Hi amarantha, my cancer grew so fast that I don't think they were sure if it was mets or the underlying breast tumor breaking through the skin. In my pathology it was only described as "ulcerative" (a.k.a. fungating). The bumps and rash started oozing and became an open wound that grew larger every day (while I was in hospital) until they started treating it with the silver rope. I was confirmed Stage IV within days of my initial DX (liver and bones). I was just dx'd in September, still trying to get my head around how quickly it progressed (and how far I've come since then!).

    I had some smaller spots appear on my stomach and they have cleared up now too.

  • amarantha
    amarantha Member Posts: 330

    Whoa. That is very dramatic LoriCA ! thank you so much for sharing your experience with me. Wow. Okay, well I'll let you know how mine develops.

  • Yaelle
    Yaelle Member Posts: 38

    Hey Amarantha, seems my situation is close to yours. My original breast cancer metastised to the skin of the abdomen only a few months after surgery/radiotherapy while I was treated with Femara. It then continued to spread and densify on the original breast and is now travelling toward the right breast.

    I'm currently treated with Faslodex and might hopefully get Ibrance together with it soon (so far this combination was not approved in Belgium). Afinitor + Aromasin only helped about 3 months, after which the mets grew back even quicker. Faslodex alone seems to slow down the expansion. Now I just hope, approval in my country will be given soon and the combination Faslodex/Ibrance will be able to help.

    It seems indeed skin metastasis are not that common and there's very few to read about it. I'm glad I found this topic.

    I hope the combination Faslodex/Ibrance is working for you.


  • dancingdiva
    dancingdiva Member Posts: 317

    Hello ladies,

    I finally found the skin mets thread. Well I have skin mets! Anyways....

    I came across an Electrochemotherapy website of this treatment being used in the UK and around the world. However, I don't see it in the US or Canada.

    Have any of you heard about this?

    I can't believe this is not being used here for skin mets...looks so good

    DD

  • Parrynd1
    Parrynd1 Member Posts: 343

    I’ve heard of it, but haven’t heard from anyone who has done it. From what I’ve read it seems like an intense treatment method, but hey whatever works right? My MO said my skin is too bad for it to be an option atm.

    Question for those with extensive skin mets...how do you manage the pain, extra sensitive skin or itching? I have Lidocaine patches, been taking pain meds & so far it’s only helped marginally. I have one big round of radiation Saturday and am hoping to start a new chemo that works afterwards. If it doesn’t I don’t know how I’ll manage with the skin how it is. Sleeping has been elusive on top of the constant pain and discomfort...needless to say I’m struggling with this a lot.

    Here’s hoping everyone else is doing well :

  • LoriCA
    LoriCA Member Posts: 671

    I think there was another skin mets thread we were posting in for a while. I've been reading that localized treatments for skin mets haven't been perfected yet because it's only in recent years that they've become a bigger issue now that people with metastatic breast cancer are living longer. In the past, usually by the time skin mets showed in Stage IV, the disease was so advanced that it was considered end-stage.

    Hi DD, sorry you find yourself here too. When I read about ECT it really made me cringe, that is a rough treatment and I can't imagine going through a treatment that makes the skin and pain even worse for several weeks (my RO doesn't even want to radiate my skin in this condition), but I guess it's an option for some when other treatments don't work or maybe before the mets get so extensive. I started doing some research after it was mentioned in the other skin mets thread. The GISEL study presented last year said results were best when the tumor is small and Ki67 is low (significant correlation) among several other factors including ER+ and proposed a Phase II study. That rules me out since my tumor is large and Ki67 is very high. ECT seems to be another tool in the toolbox but not necessarily the best option for many.

    ParryND I find the absolute worse thing is to have fabric brushing over the skin. I have some soft comfortable sports bras that don't aggravate my skin mets because of the way they fit my body and move with it. Unfortunately I also have a tumor on the side of my breast and under my arm (recurrence) and by the end of the day the pressure of the band of the bra has the tumor site really painful, especially if I've been active & using that arm a lot. I finally gave in and asked for pain meds last week. I didn't want anything as strong as what I was on last time (morphine & fentanyl), so he wrote me a prescription for percoset. I only take it when I really need it, most of the time I just tough it out. I've been using melatonin to help me sleep, as long as I don't take it every night it seems to help. During my first bout with skin mets last year I had to train myself to sleep on my back. I'm normally a stomach sleeper, and now I find myself having to learn how to sleep on my back again. On my side is even worse because of the lump under my arm.

    5th week of Taxol and not seeing results as quickly as we did the first time. Guessing I'll probably be trying a different chemo in January.

  • Parrynd1
    Parrynd1 Member Posts: 343

    Sometimes I wonder if the pain is from tumors or akin mets. I also have 2 tumors in the affected breast and one is one the side right in my armpit almost. Found out last week I have 2 new tumors in the left breast now as well. Putting pressure wherever it hurts has been helping somewhat so I’ve been stuck sleeping on my right side. Also got some lidocaine patches that help a little. I started taking CBD oil and that seems to be helping a little bit as well.

    Lori I know it sucks to see the treatment not working. I haven’t been able to find one that really does so far and it’s scary. I’m on to Halaven hopefully this Monday. One big radiation is scheduled for Saturday. We are only doing the radiation as a last ditch effort to try to keep the skin mets out of view in my wedding dress otherwise I don’t think it would have been an option for me either.

  • LoriCA
    LoriCA Member Posts: 671

    Parrynd, congrats on the wedding. When is it? I hope you have good results from the radiation so you will feel as stunning as I know you will look in your wedding dress.

    I had an amazing response to the Taxol last year, that's why my MO wanted to try it first this time even though we knew there was a chance that I might be resistant (after my RO said she didn't want to touch me). It seems to have slowed it down (IBC spreads wicked fast), but the largest tumor isn't showing any signs of shrinking and there's been no improvement in my skin.

  • Pmal
    Pmal Member Posts: 3

    I have a rash on my non cancer side. It is spreading pretty fast, how did you know you had skin mets and what did it look like?

  • Pmal
    Pmal Member Posts: 3

    I have a rash on my non cancer side. Spreading pretty quickly and under my cancer side breast, already had a mastectomy, very concerned it's mets, how was yours treated?

  • moderators
    moderators Posts: 7,659

    Hi Pmal-

    We want to welcome you to our community! We're sorry you're experiencing this worry. Have you brought it up to your medical team, or had a doctor look at the rash? We hope it's nothing to worry about, but better safe than sorry.

    The Mods

  • Parrynd1
    Parrynd1 Member Posts: 343

    Pmal,

    Mine like like I had a small pimple on my bad breast except it hurt a lot if I tried to pop it. Sorry if this is graphic for some. Unfortunately enough the treatment I was in at the time the skin mets developed I was started getting a rash all over that looked very similar. I eventually stopped that treatment and still have scars from the rash bumps. The skin mets never got better I like the rash and we started to see more of the bumps/tumors. The skin was itchy and I think red as well, but it was hard to tell since that breast had previously had 30 rounds of rads a year earlier

  • LoriCA
    LoriCA Member Posts: 671

    Well, since two systemic treatments hasn't slowed mine down and it's still spreading fast, my MO is sending me back to the same RO who said two months ago that she didn't think radiation was the right way to go. I was ready to try another chemo drug, but since the rest of my mets have all resolved (I want to be happy about that but I can't), my MO doesn't want to put my body through the abuse of another chemo drug when the problem is localized. I feel like no one knows what to do with me.

  • Parrynd1
    Parrynd1 Member Posts: 343

    Lori I feel the same way except none of my mets are resolved. I will say I did one big radiation treatment to help with pain and wearing my wedding dress and it helped so much. Wish I could do more!!! I hope the RO can help. Skin mets don’t sound like they would be that bad but I know mine are dragging my QOL in the gutter and to the bottom of the sea waving to the Titanic.

  • ADDK
    ADDK Member Posts: 70

    Hi everybody, just wanted to share with you that two days ago I started the clinical trial HER2CLIMB (Xeloda+Herceptin+Tucatinib/placebo). I now have skin mets on a large area on my left upper body (from my collar bone to where my ribs end), armpit, and the same extension on my back. Some of the mets have started fungating. It has been quite painful, but the palliative care unit at my hospital has provided with me a good cocktail of painkillers that on one hand takes the top off the pain, on the other hand still enables me to function almost normally.

  • Parrynd1
    Parrynd1 Member Posts: 343

    ADDK I’m glad to hear they have a good cocktail for you. I’ve been hanging in there on some Pain meds from surgery last year. I hope you see some good results from the trial. The skins mets have been terrible as if having cancer in general wasn’t enough