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Mandamoo 09-07-2011 01:08 AM

Skin met question
 
Hi everyone
I have a question about skin mets. I have one on and it has changed during my navelbine, herceptin and everolimus/placebo treatment. Initially there was an obvious change - it got less red, smaller and started to break into red dots. In the past week, there are more dots but in places where I had no inflammation before. I had last week off navelbine because of low neutrophils but still had herceptin. I have had a week off earlier when I had neutropenic fever.

I am wondering if the changes that I am seeing are just a normal part of the healing process or progression? I get so darned sick of seeing this thing everyday! I also have numerous lung mets and positive axilla node. Last CT showed 30% reduction in lung mets and 14% in node so I am concerned that this is a sign of progression. Next CT in 3 weeks.

Would love to here from others with skin mets.
Thanks

Mandamoo 09-17-2011 08:00 PM

Re: Skin met question
 
Just going to bump this up to see if anyone with Skin mets can chime in as to how they responded to treatments.
I had chest CT which showed stable disease in my lungs and reduction in my axilla node. Since then I have seen the skin met fade again - still there but less inflamed and sometimes it's barely there at all.
My oncologist was using the skin met as an indicator of treatment effectiveness so we of course were concerned when it looked so angry. I have another CT in a week and a half (I will glow in the dark!) as part of the study protocol.

Would love input from others who have had skin mets.

Elizabethtx 09-17-2011 08:07 PM

Re: Skin met question
 
No skin mets here, but wanted you to know I read your post. It is shocking how quickly you went from stage 2 to stage 4! I think it is a good sign that you show reduction after changing treatments. Hang in there and stay strong!

Delaney 09-18-2011 03:23 AM

Re: Skin met question
 
Hi Amanda,
I had a skin met on my chest, started out as a 'pimple' but grew slowly. They decided to remove it and found it was deeper than the scan showed. Am glad its gone now and I have a scan in a month or so. Yours sounds like its responding to treatment, I would be hopeful.

bejuce 09-18-2011 08:51 AM

Re: Skin met question
 
Hi Amanda,

Not much advice to give you, but adding my prayers that your scan will show reduction. Have you thought about Halaven? I think some other members have used it successfully to treat skin mets.

Take care,

Marcia

PatriceH 09-18-2011 04:57 PM

Re: Skin met question
 
What does a skin met look like? We get so nervous about every ache, pain, and change...but what do we watch for? I can't find anything very informative on the internet.

NEDenise 09-19-2011 06:23 AM

Re: Skin met question
 
Amanda,
I also don't really have any advice to offer. (haven't had any experience with skin mets yet) But I wanted you to know that I'm praying for you. I was diagnosed around the same time as you...and am also ER/PR neg. I guess I feel a kinship with you.

On a different note...Your avatar picture is beautiful! You look both feminine and STRONG! Your kids are learning so much about strength and courage from you. And I can tell by all the photos etc, on the fridge...that they are the center of your home. Stay strong! Keep the faith!
Denise

Mandamoo 09-19-2011 03:22 PM

Re: Skin met question
 
Thank you for the replies.
Yes - the speed of the cancer spreading was a shock to all. I am focused on remaining positive though - I had only received one Herceptin and taxotere when I had the biopsy and after the second dose I saw shrinkage in the met - my scans were clear prior to surgery so perhaps a little bit was left behind undetectable and spread prior to treatment and the FEC obviously was not effective on it's own. We and my oncologist are very hopeful that with targeted therapy I will be NED very soon.

I don't know if my skin met is average looking - I will find a pic later and post it for your information. It was dismissed as nothing for 2 months - like Delaney said - mine started looking like a pimple (we thought it was a dexamethasone reaction as I had them all over my chest - this one didn't clear with the other though and continued to grow to about 1.5 x 2.5 cm)

I have another scan next week - I am confident of further shrinkage. Our concern is the mets in my lungs - it's just that we use the skin met as an indicator of treatment success also. It has changed again quite dramatically since the flare up a couple of weeks ago - this time I feel in a more positive way.

Re: the Halaven - I don't think that is available in Australia yet - I am currently on the Bolero3 trial.

My family is my world and I am doing everything I can to rid my body of this disease. I don't get caught up in the stats and am inspired by many of the long term Stage4 ladies on here. I of course have down days full of sadness and fear but 'There is always hope' and I have plenty of it!
Amanda

jml 09-19-2011 07:31 PM

Re: Skin met question
 
There is always HOPE, Amanda!
I have been Stage IV since my primary dx in 5/2002, at the age of 33. It has been a bumpy journey, lots a tears shed and horribly fearful moments, but also so much joy, so so much joy in these 9 years.
Keep the Faith~
Jessica


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