Skin mets?

SaraD · 02-23-2007, 07:13 PM

I just started having bumps on my skin and found out they were skin mets... or "dermal" mets according to my onc. Is this common? Are there any clinical trials for HER2+ skin mets that anyone knows about? thx- sara

Chelee · 02-24-2007, 12:05 AM

Sara, This is a good place to post especially since you wanted to know about any clinical trials. But I do know of a few women here that have had to deal with skin mets and they might not see this message. So if you don't get a reply, please jump up to the "Her2 support" board...and for sure you will get a reply. Wish I could help on this one but I can't. But one lady SandyH is very knowlegable about this...she will be more then happy to answer what she can for you. Hang in there.

Chelee

Bev · 02-24-2007, 08:55 PM

Posted to keep post near the top. Good luck. BB

tousled1 · 02-25-2007, 04:13 AM

Moved to HER2 Forum so hopefully you will get more replies.

Sandy H · 02-25-2007, 02:15 PM

Hi Sara: This comes from Dr. Lupe Salazar from UW/Seattle. I talked to her in San Antonio and she told me she was working on a trial for skin mets to start up in April. It is a Phase I and a topical application to try and activate the T-cells on the skin. One would have to be off Herceptin. As soon as I get home from Florida I will be giving her a call and see where this is at in the process. I will also put this on the IBC board as well and keep everyone updated on it. She said it would require a trip to Seattle to get started and than be followed by our oncologist at home. May have to make another trip to end the trial she wasn't sure about that. I have already talked to my oncologist about it and he was excited about it. I don't know of any other trials except the Tykerb/Xeloda and Tykerb/Hercetpin. Usually, it requires systemic treatment this being a lymhethetic disease. Please feel free to e-mail me if you have questions and need to talk. Have been dealing with skin mets for 5 years now. I hope this helps. hugs, Sandy

lindaw · 02-25-2007, 04:09 PM

Dear Sara

I am in Australia so we are a little behind with trials etc. Haven't heard of the trial Sandy spoke of but would love to be on it. Will have to wait for it to be expanded to Australia although i think I will try and email the d Sandy spoke of.
I was going to add what i have used but its long andf ongoing and Sandy is in US so it will be more relevant.

Keep us posted as to how you go.All the best.

love
linda

G. Ann · 02-26-2007, 11:09 PM

Hi SaraD,
Please explain "skin mets"/"dermal mets." Is there another name to look under? Are your bumps constant, all over your body, any itching? Is there a treatment for this?

Recently I've had itching and little bumps appear daily (then go away) for last week. I've gone through obvious--skin conditions, change of soaps, change of diet, too much heating during winter. Then I read itching can be a symptom of liver problems. Haven't seen a doctor yet as I hoped it would run its course. I finished Herceptin in January after 1 year so can't blame that. Thanks for info.

SaraD · 02-28-2007, 11:48 PM

Skin mets- these are more like firm nodules under my skin, not itchy, not painful (yet); one is kind of reddish, about 1/2 inch in size. I have 4 and they biopsied one of them. One on back, two on chest, one on scalp.

There is a pharmaceutical trial coming up soon using lapatinib with something else; you must have breast cancer in your skin somewhere to be on it. It is opening down in Oregon I think. I will write again when I get more info. A doc in Oregon is opening it at the Oregon University Hospital.

thanks for the info! sara

Taffy · 03-01-2007, 02:43 AM

I don't have IBC but have been staged as Stage 3C because I have skin mets over my affected breast. These look like little bumps under my skin ... subcutaneous nodules was how my onc described them. They are only on my chest and I have about five. I don't have any anywhere else. I am on Herceptin by itself and this has reduced the tumour I had in my right breast to nothing! I had a mammo a couple of months ago and there was no sign of cancer!

Sandy, can I ask you how many skin mets you have and where they are? Do new ones pop up or do they remain stable?

Thank you in advance.

Taffy.

Sandy H · 03-01-2007, 07:39 AM

Hi Taffy, I have had skin mets for at least 5 years now. It started out as a red, itchy, burning rash looks like a sand paper area. Now, I have three small nodules that are red and hard. Very different now. They are close to the mastectomy scar and they come from the scar although may not be visible but will appear close to the scar. They will not appear else where on the body only on the chest, now they can spread away from the chest area if they get out of control. They can start out itching and burning with no visable signs. You can type in skin mets and hit search you should find some pictures however, they pertain to IBC am not sure if skin mets with IBC is the same as with just BC. I hope this helps please feel free to e-mail if you wish. Good luck to you, hugs Sandy

Taffy · 03-02-2007, 01:44 AM

Sandy,

Thank you so much for your reply. Yes, I too had the 'sandpaper' area. I was misdiagnosed with eczema! It wasn't until they felt the lump in my breast that they jumped into action. I had Taxotere for the lump but that didn't do much at all so I was put on Herceptin alone and that cleared it up completely. The skin has also healed nicely just leaving a few bumps but the red sandpapery look has gone.

My onc is keeping his eye on the few remaining nodules (they look like the ones you described) but they're not growing or doing anything so he is happy with them. If they do grow or more appear then I will be put on Capcitabine. So far so good though!

I feel so reassure reading your posts, Sandy. They make me feel that there is hope for me. When I was first diagnosed (for the second time, I had bc four years ago in my other breast and had a mastectomy) I went to pieces but reading posts like yours make me feel much better. Thank you so much, Sandy. God bless you.

Hope to chat again to you,

love and hugs,
Taffy.

atdec05 · 03-26-2007, 07:45 AM

Hi,

I've had some red bumps on my mastectomy area. 4 were removed and 2 were cancerous. My pathology report lists it as recurrent IDC, but they are 'dermal lymphatic'. I've since had a couple of new spots, 1 on my mastectomy side and one on my leg. The one on my leg seems to be going away.

What is the difference between skin mets and recurrent IDC that is dermal lymphatic? Or are they the same?

- Anna

Sandy H · 03-26-2007, 02:10 PM

I am not sure how to answer your question. I know when ever my skin mets pop up they call it (its stated on the doctor's note)a reoccurence. Than, we have had this discussion that its always there waiting to pop up so now what do you think? I have been told by several docs there is no cure for true skin mets. There are a few people that say theirs went away and never came back. My oncologist says than they were not true skin mets. I know mine never went away completely and the people I am in touch with are the same. I can tell you they are not life threatening as long as they are kept localized in the chest wall but do need to be treated when they do pop up. They do not occur on the leg or away from the chest area. Anything that comes up away from the chest is not skin mets. Wishing tou well. hugs Sandy

atdec05 · 03-27-2007, 06:17 AM

Hi Sandy,

I'm still trying to figure out my diagnosis for my recurrence. I just talked to a dr. who gave me a second opinion. He said he would not characterize the recurrences (near mastectomy site) as secondary IBC, but as skin mets. Though he said since it was regional, he would still say it was curable, hence recommending an aggressive treatment of TCH & radiation.

I will meet with my onc. tomorrow and one more doctor on Monday.

- Anna