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Old 07-05-2010, 08:22 AM   #1
Delaney
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Join Date: May 2010
Location: Ireland
Posts: 271
skin mets er-/pr- anyone else? Think I am ALONE!

Am not being flippant but it seems there is no one else with skin mets here. Gives me a bad feeling. Anyway, just in case someone can help - have to stop herceptin for 4 wks cos of heart issues so only taxotere to halt the buggers now. Am in a mood today - long day on oncology ward - no good news. Am thinking of stopping treatment and just living while I can but have decided to give it the two months to see if anything stops growing. ANY advice, or encouraging news from someone who has dealt with the same situation would be very welcome.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 07-05-2010, 09:54 AM   #2
ElaineM
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Join Date: May 2006
Posts: 3,142
Wink Re: skin mets er-/pr- anyone else? Think I am ALONE!

Sorry to hear you are feeling so blue today. Don't give up.
There has been a recent discussion about skin mets at
http://www.ibcsupport.org with links to information about treatment options and information about various creams for skin mets. You do have options besides Taxotere. Hang in there and keep putting one foot in front of the other. Also if it were up to me I would not stop Herceptin. Has your doctor suggestedTykerb or other kinds of chemo? It might be time to get a second opinion.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 07-05-2010, 01:12 PM   #3
Delaney
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Join Date: May 2010
Location: Ireland
Posts: 271
Re: skin mets er-/pr- anyone else? Think I am ALONE!

Thanks Elaine, that website is very informative and there are people there who have had skin mets for over 4 years. Maybe I'm not finished yet. Hit such a low today, your reply helped me and hopefully I'll feel better tomorrow.
__________________
Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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Old 07-06-2010, 04:47 AM   #4
Ellie F
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Join Date: Feb 2009
Posts: 1,526
Re: skin mets er-/pr- anyone else? Think I am ALONE!

Hi Delaney
Noticed that you live in Ireland just across a small bit of water from me. I totally understand how discouraging this fight is every 3 weeks I sit for the same long day at the hospital to get herceptin.
Please don't give up. Advances are being made each day and whilst we may not yet have the cure treatments to manage the beast are getting better.
Ellie
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Old 07-06-2010, 09:10 AM   #5
Faith in Him
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Location: Northern California
Posts: 764
Re: skin mets er-/pr- anyone else? Think I am ALONE!

It is very stressful it is to see the cancer grow on your skin. Xeloda/Tykerb has knocked mine out.

I hope you are feeling better today.

Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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