Skin Mets- share your treatment

cwrightrn

Hello everyone.  I'm an IBC'er that had skin mets at diagnosis--gone with ACT. After surgery and radiation I opted for more chemo to try to keep the monster at bay (carboplat and taxol). I went stage IV one year after initial diagnosis...just 8 weeks after getting off carboplat and taxol, with mets to lymph nodes in chest. Bottom line, as a TNBC'er I can't be off chemo---ever.  So I started avastin/abraxane in February and while on that cocktail my skin mets came back--confirmed by 2 biopsies.  My recent PET showed the chest nodes are stable BUT there were new nodes that showed up near the kidneys....and of course the skin mets.  I have had a horrendous cough since starting the avastin and my scans show "ground glass opacity" which they think is lymphagenic spread. We were hoping to try a PARP and get it for compassionate allowance but my Dr said the Bipar rep said its not available til July so Monday I start Ixempra and Xeloda.  I am worried about this combo as I've read it works well BUT when it comes back it comes back with a vengeance.  Just wondering what has worked for you.  My skin mets are not typical--it looks like a rash that is mostly in the radiation field--the radiation oncologist said they can radiate again but it is temporary as it will spread outside the field.  It has already started to spread.

What have you used to keep your mets at bay?  I've only heard of one drug specifically for mets-- I think its miltex from Germany-- there were a few posts about it  in the last few years. 

Thanks for your time and your insight. 

luvmyself

cwrightrn- I'm not TN but did come down with skin mets.  I just finished 12 weekly treatments of Navelbine/ Herceptin and the mets are gone. It was a pretty easy chemo cocktail compared to others that I have been on.  I'm just hopin and prayin that they stay away.  Good luck to you.

Jill

vivo

I had skin mets after surgery on supraclavicular lymphs last year. I took Gemzar , Taxotere and Herceptin and skin mets were gone!!

Nanalinda

I have not had skin mets, but I just wanted to say I hope you find something that works for you.  Good luck.  Linda

mthomp2020

I've read that Gemzar is a good tx for triple-n mets.  Plus it's usually pretty easy on you. 

ICanDoThis

Wanted to ask if you had heard about this clinical trial?

It's light therapy, where you are given a medication that makes the mets sensitive to light, and then light is applied.

It's at Tufts

http://clinicaltrials.gov/ct2/show/NCT00862901

cwrightrn

Thanks for all your replies!  I hadn't heard of the clinical trial--thanks for sharing it!  Started the Ixempra and xeloda today and praying it works.....I will do it for 3 months.  If it works we will stay on it, if it doesn't then I will go to a Parp with the gemzar/carboplat

Tnbclady

I am triple negative and was diagnosed with skin mets in November.. it is just in my skin.. how are you doing

Kicks

You probably won't get a reply from cwrightrn. This thread has not been posted on (until you) since 2010. cwrightrn also has not been at the site since 2010 also.