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deborrob

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Hi all,

Have been reading with interest the posts etc. on this site.  Was wondering if someone has some advice for me (especially med. researcher).

I was diagnosed in early 2009 with Triple Neg. IDC Stage IIIB.  Did lumpectomy with lymph node removal (cancer in 3 lymph nodes) dose dense ACT, 35 radiation.  Burned very badly and as soon as my skin healed back I noticed a rash that started on my surgical scar.  Thought it was part of healing from radiation, but as it got worse, I had a biopsy done.  Came back positive for IBC with skin mets.  All last year I was on chemo trying to get the skin mets under control to the point where a mastectomy could be performed (I am under treatment with MDA although I actually take my treatments locally in Dallas).  Eventually late last year they determined I could go for mastectomy.  They removed the breast and all of the skin that had been infected with cancer (a huge area) and replaced it with a tram flap to close the wound.  They told me they had got everything out with clear margins.  They said that 90% of the cancer was dead from the chemo.  I could not do radiation because of the tram flap and because of the earlier radiation.  One month later after surgery, a rash developed again.  At first I didn't notice it as my skin was so red from the surgery and so on.  However, had it biopsied - positive again for skin mets - triple negative.  Had a PET scan, but it is difficult to tell at this stage if there is cancer anywhere else besides just the skin because of the inflammation from the surgery, however, the doctors don't think so.

So the chemos I have been on are:
ACT for original IDC diagnosis
Ixempra/Xeloda for IBC - couldn't tolerate Xeloda (dropped my blood pressure dangerouisly low).  Stayed on Ixempra alone for a bit, but had progression of rash.
Taxol/Avastin - a couple of rounds - had progression of rash
Carbo/Gemzaar - this worked way better than anything else and killed a lot of the cancer, but after 4 rounds had a bit of progression again
Eribulin - did two rounds before surgery and am now back on it

I am devastated, of course, to have had such a huge, radical surgery that essentially didn't work.  I am concerned that I have already been through a number of chemos and that I am running out.  I am not sure the Eribulin is really working that well (I'm on the second round after surgery) and can't tell much difference and I think there might be slight progression.

On my next visit to MDA I have an appointment to see if radiation can be done - doc says just a superficial radiation to the top of the skin.

I have read a lot on this site about different chemos and things that have never been mentioned to me as treatment options and I wonder why that is. 

Mostly, I am starting to give up hope of ever being free of cancer.  I feel like that the rest of my life may well just be spent trying to control these skin mets with little success (going by success up to now).

Does anyone have any advice/ideas that I may discuss with the doctors? 

Your time is appreciated,
Deborah

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Deborah Robertson
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