Urgent - Need Help about Chemo & Skin Mets

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ladylake88
ladylake88 Member Posts: 12
edited June 2014 in Triple-Negative Breast Cancer

Hi, I am a newbie and desparetly need some help. I was DX on 3/08, had a lumpectomy on 5/08, was not a canidate for radiation due to the fact that I am disabled so they gave me copaxane and taxetere or a form of it. When they did the mastectomy 10/08, I was filled with cancer. The 1st of Aug. this year I noticed skin mets around the surgical scar. I just finished 35 rds. of rad. Now onc. #1 wants to give me Adriamycin (I am allergic to anything that ends in mycin) but she said they would give me lots of steriods. Went and got a 2nd opinion and onc #2 wants to give me Avastin and Zeloda. I have to make a decision by Wed. and I am not sure what to do. The never told me there was not a chemo drug that would kill TNBC. or I would have had the double mas. right away, when they took me lymph nodes out. The cancer had spread to the 1st node. Anyone out there that can give me some help, please? Onc. #1 said I had about a year to live as skin mets are hard to control. Had a PET on 11/24 and it was clean. Had a biopsy of one of the mets on 11/23. Report not back yet. Most did really shrink during rad.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited November 2009

    I am so sorry to hear your present situation and am sending you all well wishes and prayers.  But one line in your post, I must address, and that is where you say there is no chemo drug to kill TNBC.  That is not correct at all.  In fact, TNBC, being as agressive as it is, usually responds better to chemo than hormone positive type cancers.  Many TNBC gals are alive because of the chemo they were given.  What the medical field cannot do is guarantee that it worked 100% at killing that one stray cancer cell that may have hid throughout the treatment.  I wish you nothing but the best, stay strong and fight this beast.

    Linda 

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  • ladylake88
    ladylake88 Member Posts: 12
    edited December 2009

    Hi Linda,

    Thanks for the post. I didn't know that about TNBC. All I have read has been really negative about the chemo drugs and that they have not found that magic bullet yet to kill that type of cell. That was encouraging news in your post. Got my path report back today and the biopsy came back positive. The PET can't pick up something smaller than 1 cm. Sure wish I knew what to do. The skin mets showed back up as soon as the rad was done.See onc. #1 on Wed. Don't know what to tell her I want to do. Still doing research.

    Lynn

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  • LRM216
    LRM216 Member Posts: 2,115
    edited December 2009

    I wish you the best.  Stay strong, you can do this.  Keep me posted, please.

    Hugs,

    Linda

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  • Fidelia
    Fidelia Member Posts: 397
    edited December 2009

    Hi LadyLake - I have ER+ and have had a couple of recurrences - both extensive and involved skin mets. I had 2 mets both times - both times I had them surgically removed - quickest way to be rid of them - both times I had treatment and am still around - I do not think the 1 year timeline is terribly helpful - I had my first couple of skin mets for over 1 year before I got treated because the onc did not recognise them as mets - thought they were blind pimples - second lot - boils because of pigment - bottom line - no harm in getting them surgically removed and then have the pathology to see if they are the same type as the original tumour - agree completely LRM216 that the more aggressive cancers respond better to chemo - even read an article today which confirmed that the modern chemo treatments are very effective in the triple negative setting - mets can be viewed as something almost to be treated as a separate challenge - and skin mets have the advantage of being able to be removed - I took this approach on the basis that the less cancer anywhere - the better - they may be associated with widespread disease - but once they are removed - or irradiated - they are gone!

    Keep in touch and let everyone know how you go.

    Fidelia

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  • mossybaby
    mossybaby Member Posts: 49
    edited December 2009

    Hello again lady lake.  I replied in another thread but think maybe I was insensative and for that I'm sorry. 

    You were looking for help with the Chemo combo question and I barged in to talk about the skin mets because I have them now too.  I read in another thread somewhere that the Avastin / Zeloda combo was a good one.  I'm not on that one myself but since this round doesn't seem to be working Ixempra & Xeloda(hence the skin mets in the middle of it)..I may well be up for yet another combination.   The TAC (A-being adriamyacin combo didn;t work for me either & that drug is a particularly nasty one with badass side effects).  This Triple negative crap is a awful.

    I'd like to talk with you more since our situations seem very similar. Had my double mast 5 months after chemo & still fighting this so I feel the same like if they did the mast first would things be different. Best of luck to you Wed.  Lots of love to you I hope to talk soon. Yvonne

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  • ladylake88
    ladylake88 Member Posts: 12
    edited December 2009

    Hi, I sure am with you Yvonne, wish I knew then what I know now. Things might certainly have turned out differently. From starting out with a 1.5 cm, Lump. and then chemo and then a Mast. with 4 cm of cancer, I would have had that puppy taken off right away when it was just 1.5 cm and then had rad. My onc. #1 called me today. She got my path report back and it was cancer in the skin met, so she wants to do what onc. #2 suggested and try the Avastin & Zeloda. If that doesn't work, I am going to switch to onc. #2 as she has 30 years experience in this field and has seen many more cases than the young woman I am with now. Our stories sure are similar. What chemo combos has everyone out there had that has had skin mets? Did any of them get rid of them for good? Would love to hear your stories. They are going to start the chemo Monday. There is an old thread (2/09) about skin mets in the IBC forum and one man just took his wife to MD Anderson for help. I am anxious to hear what they are going to put her on. I tried to make an appt. to go there but could not afford it. They wanted me to stay there 7 to 10 days and run all of the tests over again and do tests on my biopsy piece and then see an onc. for a recommendation. Just don't have that kind of money

    Lots of Love to All.

    Lynn

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