 |
09-07-2011, 01:08 AM
|
#1
|
|
Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
|
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
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
|
|
|
|
09-17-2011, 08:00 PM
|
#2
|
|
Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
|
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.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
|
|
|
|
|
09-17-2011, 08:07 PM
|
#3
|
|
Senior Member
Join Date: Oct 2010
Posts: 229
|
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!
__________________
Diagnosed: Feb 2010 @ 46 yrs old
Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
Port removed July 2011
Bone scan, chest MRI 12/11 clear
Vaccine trial began Oct 2011
|
|
|
|
|
09-18-2011, 03:23 AM
|
#4
|
|
Senior Member
Join Date: May 2010
Location: Ireland
Posts: 271
|
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.
__________________
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.
|
|
|
|
|
09-18-2011, 08:51 AM
|
#5
|
|
Senior Member
Join Date: May 2009
Posts: 510
|
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
__________________
ER+ (30%)/PR-/HER-2+, stage 3
Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin
|
|
|
|
|
09-18-2011, 04:57 PM
|
#6
|
|
Senior Member
Join Date: Oct 2009
Posts: 98
|
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.
|
|
|
|
|
09-19-2011, 06:23 AM
|
#7
|
|
Senior Member
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
|
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
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
|
|
|
|
|
09-19-2011, 03:22 PM
|
#8
|
|
Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
|
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
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
|
|
|
|
|
09-19-2011, 07:31 PM
|
#9
|
|
Senior Member
Join Date: Dec 2006
Posts: 415
|
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
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 04:31 PM.
|
Linear Mode
