Help please: Triple Negative Skin mets

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Hi all,

I have secondary BC in liver and bone, but mine is not triple negative and I don’t have skin mets. This is a post for a friend in Cyprus.

If any of you have any positive experiences and suggestions, please share.

Thanks in advance.

xxx

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bump

Anyone around?

I’m not looking for experiences from Cyprus, just what you have experienced in the UK (or anywhere else).

Thanks girls,

xxx

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Hi M :slight_smile:
I was dx with skin mets within weeks of completing fec+ tax back in aug 2010. Ther were very nasty and grew quickly. I had major surgery where my recon was removed and a 22cm piece of skin + some muscle too. I was closed up using a tummy flap. Look like I’ve been bit by a shark but I’m just glad to still be here!
I had extensive rads as I hadn’t had them before. If ur friend has had rads before then this won’t be an option. Chemo was witheld in my case as I was told we should save the options for later…
Skin mets are stage 4 even though they are classed as a local recurrence (I’m assuming the mets are on her breast/ recon?).
Hope this helps- feel free to ask any questions I’d be happy to help.
Tina xx

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Hi Tina,

Thanks for replying. Do you mind me asking whether your skin mets have been stable since the rads? I think her skin mets came back years after her primary and came back in the underarm area.

I don’t know much else, but reading between the lines, her onc over there didn’t give her much hope. It’s disgraceful I think when it’s claimed that she’s in the best oncology centre in Cyprus. She’s looking at options of maybe travelling to other countries. Just like to know what’s the situation is like here in the UK.

Thanks,

M. xxx

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I was also given little hope- well no hope actually. My onc said organ involvement was inevitable +!would happen quickly. She said I was expected to deteriorate very fast. That was 16 months ago…
My organs have only recently been affected, a year after my skin mets dx.
I was blasted with rads for 5 weeks, a really large area was treated until my skin started breaking down badly. Thankfully, the skin mets have not made a reappearance since (*touches wood*) but there is disease under the skin, mainly along the scarline. My rads onc has been delighted and admitted he didn’t expect such a great result.
If your friend can’t have rads, then chemo is the obvious option. I had a brilliant response to carboplatin so she should ask about trying that alone or with gem (gem-carbo). She could also look into PDT which is a new treatment that is currently being successfully used with skin + other surface level cancers. Not sure how available this is where she is but if she has the financial means, she could travel? It’s quick and very effective in many cases (have a look at killingcancer.co.uk).
Hope she gets an effective treatment plan sorted very soon :slight_smile:
tina xx

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Hi again, Tina,

Thanks for info and especially the link! I will pass those on.

Sorry to hear your organs got affected, hope you’re having some effective treatment for that.

Thanks a million!!

xxx