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Topic: Does anyone have skin mets ONLY?

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Jan 24, 2014 08:52AM

steelrose wrote:

I got my CT scan results today, and they are all clear! Yay! I've been NED since Jan. 2011, until I was diagnosed with skin mets this week. I'm just wondering if there's anyone in the same boat? It seems odd, but this whole mess is odd. And what kind of treatment did you do for the skin mets?

Thank you!

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 24, 2014 10:23AM stagefree wrote:

Rose,

Not in the same boat (though wish I was) but MO always says no specific treatment for skin mets other than regular treatment. Hope someone with first hand experience / info reply soon..

hugs

Ebru

Dx 4/9/2012, IDC, Stage IV, Grade 1, mets, ER+/PR-, HER2- Chemotherapy 4/12/2012 Xeloda (capecitabine) Hormonal Therapy 8/25/2012 Hormonal Therapy 6/9/2016 Arimidex (anastrozole), Zoladex (goserelin) Chemotherapy 6/9/2016 Cytoxan (cyclophosphamide), Xeloda (capecitabine)
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Jan 24, 2014 10:56AM steelrose wrote:

Thank you for replying, Ebru! I suspect there aren't many in my situation... The oncologist wants to do radiation. (((Hugs))) to you!

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 24, 2014 05:17PM steelrose wrote:

Thank you so much for the tips, Bon! You're the go-to lady for the skin... I appreciate your helpful posts. 

Rose.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 24, 2014 07:49PM - edited Jan 24, 2014 07:51PM by Heidihill

What a relief, Rose! I would think this is very positive along with indolent skin mets. I've been doing some research because there is the possibility my recurring rash could be skin mets. If it were just radiation recall I've read that laser treatment can help. For mets, radiotherapy seems to be the first option (although not everyone is a good candidate for this). If that doesn't work they can try something called electrochemotherapy, which seems to have a very high success rate.

Wishing you all the best! 

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 25, 2014 01:02AM steelrose wrote:

Heidi,

I was just reading about the electrochemotherapy last night. I meet with the radiologist on Mon. and will report back here in case anyone is interested. To look at my skin, it appears to be a combination of radiation recall and skin mets (on the originally infected breast). It will be interesting to hear what the radiologist has to say.

Your recurring rash doesn't sound like skin mets to me. I didn't think they could disappear and reappear! It's certainly worth having a biopsy though, if it appears again. I sincerely hope it doesn't!

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 25, 2014 07:40AM 3littlegirls wrote:

Rose,

Look into Rose Bengal. My NO uses it on skin cancer and other mets. It will dry up the met , killing it and also train the immune system to go hunting for other cancer cells. My NO can get his hands on it. If your interested in it PM me and I will see if he can locate someone in your area. It has been getting really great results. 

Good luck,

Michelle

Michelle Dx 4/19/2010, IDC, 6cm+, Stage IV, Grade 3, 5/18 nodes, mets, ER+/PR+, HER2-
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Jan 27, 2014 05:50AM AymzTX wrote:

skin mets isn't my only Mets, but one that was the most rampant of the three.  Mine is on my scalp and a few other places.  Xeloda has worked well for me and most of the skin mets are gone after about 4 weeks(one on one off).  It's nice to be able to feel the cancer working by seeing them shrink.

Surgery 2/1/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel
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Jan 27, 2014 07:36AM steelrose wrote:

Thank you, Aymz! Xeloda can be so effective (shrunk my liver/bone mets!). I'm so glad it worked on your skin mets, and hope it continues to do so for a looooong time.

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 29, 2014 02:18AM steelrose wrote:

I met with the radiologist, and before looking at my rash and skin mets, I told him that I first thought it was radiation recall (damage from rads which I had to my sternum in 2010). He laughed and said, "Radiation gets blamed for everything!" But after examining me, he admitted that it seems to be radiation recall in the previously radiated field, and of course my skin mets that appeared at the same time as the sunburn-like  rash, in the same area. Hmmm... Coincidental? I'm not so sure. I don't want to scare anyone away from radiation because radiation cleared up ALL of the mets to my sternum, and spine too after surgery, and helped me get to NED. But like all treatments, it comes with side effects, even years later. And I just wonder if it may have made the radiated area more vulnerable to mets over time??? Anyway, more questions than answers, and my immediate problem is the skin mets, so we're treating them with... you guessed it... more radiation! Yay! Cancer's the biggest enemy, that's about the only thing I'm sure of.   

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 29, 2014 10:05PM Heidihill wrote:

Thanks for the update, Rose. If the rad recall rash goes away with rads to the mets then there probably is some kind of connection between the two. Hope you can kill two birds with one stone and maybe even a third bird, i.e., any other malignant or precancerous cells that may be floating around.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/25/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 24, 2014 11:56AM kimh8 wrote:

Dear steelrose,

My mom was first diagnosed with skin mets only last week and ct scan shows no signs of mets in other parts of her body. The doctor said it is a very rare case in that mets appear only on skin first. We will start hormone injection tomorrow possibly and I hope it works! How are you treating your skin mets and could you share some tips for managing the scar? 

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Jul 24, 2014 12:57PM - edited Jul 24, 2014 12:58PM by steelrose

Kim,

I'm very sorry about your Mom's diagnosis, but it's wonderful that it's limited to her skin. Where are her skin mets? And what drug has her doctor prescribed for her, if you know? In my case, the skin mets were treated with radiation in February of this year, and they haven't returned to that spot (on my breast). But last month I noticed a few tiny bumps in another area that appear to be the same thing, just outside the radiation field. I've been rubbing pure coconut oil on my skin every night, and being careful not to touch the area, or wear anything that might irritate it. Also, I use a very gentle cleanser (Cetaphil) to clean the area.

Please let me know how your Mom's doing. I hope that soon she will be rid of those pesky skin mets!

All the best,

Rose. 

 

Dx 1/22/2010, IDC, Stage IV, mets, ER+/PR+, HER2-

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