Skin mets anyone?

[Anonymous]

I am new to this board and need information from any of you on skin mets. I have the info from the web on them and its not very encouraging. I need to know if anyone on here has had them and if so how long have you been dealing with them? Does anyone have them without other mets to bone and organs? Is it ever possible to get rid of them? Sorry for so many questions however, I think getting info from the person thats been there done it is helpful along with other info one reads. Look forward to hearing from someone soon. Until I get to know this board a little better I don't feel comfortable using my name. I am careful about giving personal info on the computer.

[Lolly]

Hi,
I had skin mets with my first recurrence, in 2001, and also mets to my lymph nodes; supraclavicular, neck and axilla. The skin mets consisted of a rashy patch just over my collarbone, and 3-4 small peppercorn sized nodules under the skin in my mastectomy scar area. The rash was excised and biopsied along with a bit of one of the neck nodes, to confirm the recurrence. Since I am Her2+++, I started Herceptin along with Navelbine, and the skin mets were the first to go. After 6 months was NED and although I experienced another recurrence to the same lymph nodes again this spring, the skin mets have never reappeared.

You don't say whether you're Her2+++, but I remember some others who've reported various degrees of response with combination chemo.

Hope this is helpful.

Lolly

[Kaye]

Lolly,how were the mets to the supraclavicular nodes, axilla, and other local areas determined? What kind of tests, scans, or ? were used? Thanks in advance

[Lolly]

Kaye,

The first recurrence was confirmed to be mets of the original her2+ bc through biopsy of the skin rash, and biopsy of one of the nodes at the base of my neck. This was after a CT scan failed to pick up the activity that we could feel and see. This was on my left side, site of the primary bc. The activity to my right axilla wasn't apparent until after the evidence was in on the other sites, and during the two weeks before I was scheduled to start Herceptin/Navelbine. We didn't want to wait for more scan's, tests, etc. before beginning treatment.

When I started having symptoms of a second recurrence(after 3 years on Herceptin!)to the same nodes, my symptoms were that the nodes became hard and enlarged and hurt off and on.
We decided on a PET scan this time as the CT had been unreliable before, and because the surgery for the biopsies had really raised hob with my lymphedema to the left arm.
The PET confirmed a supraclavicular node and 2 nodes in the right axilla. It's interesting that these nodes are probably the same ones involved the first time, so the cancer was not actually gone, just dormant.
Also interesting is the fact that the first recurrence seemed to be spreading like wildfire, and this second one was moving relatively slowly, which I attribute to Herceptin.
Love, Lolly

[Velva]

I'm on my 2nd round of skin mets. 1st ones were knocked out by Navelbine & Herceptin; then radiation to some stubborn neck nodes. This time I have been on Herceptin & Xeloda, (tried 3 weeks of Navelbine 1st, but it seemed to have no response). Progress is slow, but steady on Xeloda & Herceptin. My skin mets were confirmed by "punch biopsy" CAN BE DONE in docs office.

[Anonymous]

Thanks Lolly. I am Her2 positive and er/pr neg. How big an area was the skin mets that they removed? Gosh, that is encouraging to me. Wish there were most that would respond maybe, it not that common?

[Sandy H.]

I have had 3 recurrences of skin mets. The good thing is they are not life threatening and are treatable. I tried Herceptin/Navelbine, Herceptin/Xeloda these combos did not work. Did Miltex for a few months then found out Herceptin, Taxol and Carboplatin works great for me so far. If this stops working then we will try Cisplatin instead of Carboplatin. Good luck and keep us updated. Hugs, Sandy

[Jackie]

I had mets to my spine first, then developed skin mets. Luckily, they don't ooze, itch, or bother me in any way (other than they're ugly!). I have individual bumps scattered around my body about the size of an eraser, and a big patch under my arm on my uneffected side about 3 in. square. Mine were responsive to navelbine, then gemzar, but they have never gone away, which my onc said would be the case. The positive response is that they flatten out and get less red. Not sure why others have had theirs disappear, but I hope yours do, too!
Best of luck to you,
Jackie

[Lolly]

You're welcome, and I'm also er/pr negative. The area that was removed was about a half inch around, but the surgeon removed about an inch of skin altogether.I think to some degree the response depends on where the skin mets are located. If in an area where circulation is a problem, like in the scar area, I understand it can be difficult to clear them up, so in that respect I guess my response with the little guys around the scar area was rare. My oncologist was thrilled, I remember that!
I'm glad you're encouraged, keep that positive attitude :)
Love, Lolly

[Lindaw]

I posted a message this morning but I don't know where it went. I have had about 3 recurrences of skin mets. Initially not sure if they were as they were tiny dots on the scar. The next time was little sesame seeds and then a scar. I am on Xeloda/herceptin this time and it has vanished - after one round. I also have a small lump at the end of the scar which is softening. It does not seem to have gone anywhere else for me at this stage so i just keep taking the chemos they give me.

All the best -

love
lindaw