Go To Main TNBC Website


  New Posts New Posts RSS Feed - Skin Mets--share your treatment
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Skin Mets--share your treatment

 Post Reply Post Reply Page  123>
Author
cwrightrn View Drop Down
Newbie
Newbie


Joined: Jul 20 2009
Location: Spokane, Washin
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote cwrightrn Quote  Post ReplyReply Direct Link To This Post Topic: Skin Mets--share your treatment
    Posted: May 09 2010 at 1:53am
Hello everyone.  I'm an IBC'er that had skin mets at diagnosis--gone with ACT. After surgery and radiation I opted for more chemo to try to keep the monster at bay (carboplat and taxol). I went stage IV one year after initial diagnosis...just 8 weeks after getting off carboplat and taxol, with mets to lymph nodes in chest. Bottom line, as a TNBC'er I can't be off chemo---ever.  So I started avastin/abraxane in February and while on that cocktail my skin mets came back--confirmed by 2 biopsies.  My recent PET showed the chest nodes are stable BUT there were new nodes that showed up near the kidneys....and of course the skin mets.  I have had a horrendous cough since starting the avastin and my scans show "ground glass opacity" which they think is lymphagenic spread. We were hoping to try a PARP and get it for compassionate allowance but my Dr said the Bipar rep said its not available til July so Monday I start Ixempra and Xeloda.  I am worried about this combo as I've read it works well BUT when it comes back it comes back with a vengeance.  Just wondering what has worked for you.  My skin mets are not typical--it looks like a rash that is mostly in the radiation field--the radiation oncologist said they can radiate again but it is temporary as it will spread outside the field.  It has already started to spread.
Thanks for your time and your insight. 
We are a family of FAITH, HOPE and LOVE
DX 2/09 IBC, stage IIIB, 6/15 nodes, TN, BRCA-: 1/10-stage IV, mets to mediastinal nodes, 4/10 skin mets recurrence
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2010 at 2:23am
Hi, hon.  I'm wondering if it would make sense to go back to carboplat and taxol since that combo successfully kept it at bay until you went off it.  What does your onc say about that?    I don't know anything about post-ixempra rebound, but I do know from many that it is a tough drug to tolerate.  For that reason I might want to try other things first.   It's so hard to know what to do.   What scheduling are you planning for the ixempra and xeloda?    How are you doing emotionally, and how is your family?
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
cwrightrn View Drop Down
Newbie
Newbie


Joined: Jul 20 2009
Location: Spokane, Washin
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote cwrightrn Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2010 at 8:57pm
Thanks Denise for your reply but I'm having a hard time understanding why you responded in the mets forum if you are NED.  I don't mean to be rude but I want to hear from others who are in the same boat as me....or who have gone through similar treatment.  Heck, I just noticed you are stage 2--you should be off these forums enjoying your life!!!
We are a family of FAITH, HOPE and LOVE
DX 2/09 IBC, stage IIIB, 6/15 nodes, TN, BRCA-: 1/10-stage IV, mets to mediastinal nodes, 4/10 skin mets recurrence
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2010 at 11:28pm
I *am* enjoying my life.  I'm also here helping out however I can, but I can understand if you don't want to hear from me because I'm not currently diagnosed with mets.  We all have different needs, and you may need to connect exclusively with women with stage IV disease.   If so, I'll be sure not to respond to any more posts from you, and will not be at all offended if that's what you need.    There used to be this huge segregation between the 'talk' section and the 'mets/recurrence' section, but that seemed to dissolve, which I think is a good thing.  I've been part of TNBC foundation since I was diagnosed, and through my time here I have made many friends. Quite a few have gone on to develop metastatic disease, and some have died.  I myself have had many false alarms so far, and could very well be walking around with metastatic disease and not yet know, given that I did not have a pCR during my neoadjuvant chemotherapy and have had many signs that things might not be well, like tumor markers and strange findings on PetCT and something in my bone marrow.   I guess what I'm trying to say is that one of the biproducts of being very high risk and facing my mortality and losing friends is that to me we are all sitting in the same big pot of soup.  Does this make sense?  I have also changed my career direction (from microbiology research to cancer), which means that more and more, I know a lot about current treatments and what's coming down the pike.   When I was in the middle of chemo, I was brought to my knees in gratitude by all the help we received.  People climbed out of the woodwork to cook for us, drive for us, and pretty much show up in all kinds of wonderful ways.  Being given to the way we were has made me want to give back.  Changing career directions is one way I am trying to do that.  Another way is that I offer my heart and whatever I know that might help anyone to the women in this community.    My heart is big, and because of the way I have related to my disease and the prospect of my own death, I have developed a great capacity to be there for others.  Fear is a great constrictor, and you will find that women  who have not been diagnosed with stage IV disease and are still in the unprocessed grip of this fear will not visit this part of the forum.  Those of us who have been around for a while and have developed a more peaceable relationship with our fear want to be there for everyone who needs help, regardless of circumstance.    Me today, you tomorrow.  You today, me tomorrow.   May no-one feel alone and apart from humanity.  Human suffering is universal and inevitable.      I can't really explain myself, I see.  But maybe you get the idea?

Hey, I just noticed your signature: "we are a family of FAITH, HOPE and LOVE".  That is exactly it!!   That's why I am here!  Am I making sense now?  Because we are a family of faith, hope and love, and that's what family members do: they show up and offer what they can.

Love,
Denise


Edited by dmwolf - May 09 2010 at 11:30pm
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 09 2010 at 11:45pm
One more thing:  because of my nature and the way I respond to threat and adversity, I actually feel like I have much more in common with women who have been diagnosed with stage iv disease than I do with most early stagers who feel confident that they are 'cured' and believe that 'positive thinking' will protect them.   I am here for company too.   You would see what I mean if we were to meet in person.  Going 'there' the way I do means that I step apart from those who can re-enter the illusion of an endless carpet of time rolling out in front of them.    I have much more in common, emotionally speaking, with women who have been forced to face their own deaths.

So it is a combination of wanting to be of service, and craving the company of my own kind, that brings me here.    In a deep way, we are all in the same boat, and this is a place I know I can be met in this knowledge.  I am lonely in my life because of this change in orientation, despite my many loving connections.   Here, I feel closer to being met where I live.

There you have it.   Two sides of the coin that brings me here.  What do you think?  Are you still kind of mad to see me here?

love,
d






Edited by dmwolf - May 09 2010 at 11:49pm
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
cwrightrn View Drop Down
Newbie
Newbie


Joined: Jul 20 2009
Location: Spokane, Washin
Status: Offline
Points: 27
Post Options Post Options   Thanks (0) Thanks(0)   Quote cwrightrn Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 12:34am
Thanks Denise for your reply.  Although I have been a member of this site for a year I don't frequent it often....I love breast cancer.org and spend most of my time there---the Stage IV forum there is STRICTLY for Stage IV'ers and others are asked to respect the privacy of the stage IV forum.  Because of that I was confused by the responses I saw on TNBCfoundation.org.   Although I understand where you are coming from I think that when someone sees that you are a senior member they automatically assume that you are just like them...in the same boat...and your advice/posts adhered to when in fact you are not in the same boat or had the same experiences and you are not in constant treatment as many of us HAVE to be because chemo is the ONLY thing that works for us TNBC'ers.  It sounds like you have found your niche in this community and I am sure you have blessed many people.  Thanks for explaining how the forum is different from what I am used to.  I'm just not sure its where I need to be....but I'll continue to peruse from time to time.
We are a family of FAITH, HOPE and LOVE
DX 2/09 IBC, stage IIIB, 6/15 nodes, TN, BRCA-: 1/10-stage IV, mets to mediastinal nodes, 4/10 skin mets recurrence
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 1:24am
I do see your point.  This makes me wonder whether others with stage IV diagnoses would prefer this subforum to have the same type of privacy.  If so of course I would want to respect that.  The last thing I want is to make any part of our community feel unsafe or intruded on. 

Would anyone else like to chime in on the topic?   Those of you with stage IV diagnoses: would you prefer a privacy boundary of some sort applied to this subforum, like it is on cancer.org? 


DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
tracy5000 View Drop Down
Groupie
Groupie


Joined: May 20 2009
Location: Michigan
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote tracy5000 Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 10:46am
I for one like the forum just the way it is.  When I was first diagnosed with recurrence/mets, you made me feel so empowered Denise.  I wasn't liking the initial conversations with the oncologist I had then.  I also find that some of the senior members here that don't necessarily have mets know a lot about treatments that may be available and at least offer support to us all.

CW - I don't have skin mets and haven't been through all the treatments you have.  I do know that the abraxane/avastin did wonders for my mediastinal & interhilar nodes.  From some of what I've been reading, what works for one person doesn't necessarily work for another and may not work for all the different tumors.   Sorry I'm not more help.

Tracy
Dx 5/06 Age 39 Stage II, Grade 3
(3.5 cm, 0 node) part mast, AC&T
Dx 5/09(axil & supra intra & media nodes, pleural mass)
treatment A & A
10/09 NED Rad & Maint Avast
8/10 3.5 cm Hilar Node, A & A
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 11:29am
Thanks, Tracy. :)
love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
kirby View Drop Down
Senior Member
Senior Member


Joined: Oct 09 2007
Location: bay area,california
Status: Offline
Points: 1030
Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 5:06pm
Even I question myself sometimes at why I read this forum. Although almost 10 years out, I still feel "it could have been me." I am not a paranoic by any means, generally preferring to try and stick with logic [ when possible] and worry when I know I have something concrete to worry over. I think of it as liking to be prepared and relating to be in someone else's shoes. I've also been around plenty stage iv's that feel shunned or still have the need to protect others, those that don't want to recognize exactly where they are or whatever terms they choose. Welcome one and all. I try not to live in fear for your disease or mine.

Edited by kirby - May 10 2010 at 5:07pm
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
Back to Top
chloesmom View Drop Down
Groupie
Groupie


Joined: Jan 11 2010
Location: collierville tn
Status: Offline
Points: 40
Post Options Post Options   Thanks (0) Thanks(0)   Quote chloesmom Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 6:10pm
Denise, you were the first one to answer a post i Had about diet changes.  Your posting was so up-lifting and can me a sense of peace.  That is a big part of what this forum is all about-  peace, encouragement, and seeking answers.  You, Denise, play a big role in everyones lives on here.  To me, if someone is willing to sit down and spend a minimum of fifteen minutes responding to my posting, that person is showing a true concern for me.  I think even though you are not stage IV at this moment, you have done so much research, have so many connections, etc., that your responses are very valuable.  Thank you for everything you do Denise! 
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 6:32pm
Thank you, I appreciate that.  I feel like everyone on here is extremely loving and helpful, whatever their circumstances.  Like you, it is one of the many things I love about this community. 
Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3609
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: May 10 2010 at 9:41pm
Can't remember who said It "Together We Stand; Divided We Fall" or something like that.

I have responded to posts in "new member", "talk" and "recurrence" forums. Some of the most uplifting, heartwarming, comforting and loving threads have been shared by people from stage i to stage iv. Humor, Hope, Sympathy, Empathy, Love are just a few of the words I think of when I read some of these threads.

We are here for one another. I'm not going to call the roll because I'll leave someone's name out and "that wouldn't be fair", but there is a vast group of ladies who visit this site who care for each other NO MATTER THE STAGE. I pray if I find myself with a stage iv diagnosis some of you who are still ii's or iii's or even i's will be here for me.

I see people every Friday at the oncology center with different stages, different kinds, different prognoses of cancer and they are all suffering in one way or another. But they all need a kind word and a warm blanket.

Whoah Girl,

Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
Back to Top
kidzrn View Drop Down
Senior Member
Senior Member
Avatar

Joined: Dec 11 2008
Location: United States
Status: Offline
Points: 171
Post Options Post Options   Thanks (0) Thanks(0)   Quote kidzrn Quote  Post ReplyReply Direct Link To This Post Posted: May 11 2010 at 11:40am
Just wanted to share part of a post from another board that might help with the skin mets question....Hope this helps...

We found a clinical trial at Tufts medical in Boston doing research using Photodynamic Therapy for chest wall recurrence where chemo and radiation have failed to stop it.

What happens with the PDT is that the skin mets are killed off using a photosensitive drug and laser therapy. As the cancer dies off under the skin, it results in the open, oozy sores, that sound much like what you have. So maybe the chemo is working and killing the cancer.
She  has been back to Tufts 3 times, and probably will go back at least 1 more time. Currently she is not on chemo, and is just using the PDT to control the skin mets. She is still under the care of her Onc, and has blood work and checkups every 3 months. She still has scans every 6 months. Her last checkup showed her clear of any distant mets.



christi
2006,TNBC,Gr3 dbl mast, 4AC/4T {NED 4/07}, Lung Met 4/08, Carbo, Avastin, Taxol/Taxotere (CAT)x4, Lung Surgery 9/08, 4 CAT, then Avastin every 3 wks...NED 2/09, 2/10, 6/10, 10/10 Scans 4/11
Back to Top
nvs View Drop Down
Newbie
Newbie


Joined: Jun 07 2010
Status: Offline
Points: 20
Post Options Post Options   Thanks (0) Thanks(0)   Quote nvs Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2010 at 12:25am
Hi

I am new to the forum too and found DeniseĀ“s response to be very encouraging, warm and useful. Sometimes the people we are asking the question to take a while to respond. It was nice to find someone had any interest in my post while they get to me.

keep strong you all!

nell
dx Aug 08
4 AC
4 Taxol
Lmpctmy
2 Taxol
Rad 32 s.
Mets Aug 09:both breasts, skin, pelvic bone, chest nodes.
4 cisplatine + taxotere + avastn;
3 gemzar + vinorelbine + avstn
Now: Ixempra+Xeloda+Avstn
Back to Top
nvs View Drop Down
Newbie
Newbie


Joined: Jun 07 2010
Status: Offline
Points: 20
Post Options Post Options   Thanks (0) Thanks(0)   Quote nvs Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2010 at 1:24am
cwrightrn,

where can i find the cancer.org Stage IV forum? can you please share? I stopped going there bc the only thing I found closest to my case was the "survivors network." thanks!
dx Aug 08
4 AC
4 Taxol
Lmpctmy
2 Taxol
Rad 32 s.
Mets Aug 09:both breasts, skin, pelvic bone, chest nodes.
4 cisplatine + taxotere + avastn;
3 gemzar + vinorelbine + avstn
Now: Ixempra+Xeloda+Avstn
Back to Top
dmwolf View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jan 22 2009
Location: Berkeley, CA
Status: Offline
Points: 3619
Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2010 at 9:27am
Thanks, Nell. :)

The BCorg site is at: http://community.breastcancer.org/, & the stage IV forum down the page under the heading 'Connecting to Others with a Similar Diagnosis' (if you go to the main page, you'd click on 'Discussion Boards' and go from there).

And of course there is the lovely Inspire: http://www.inspire.com/groups/advanced-breast-cancer/

Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
Back to Top
nvs View Drop Down
Newbie
Newbie


Joined: Jun 07 2010
Status: Offline
Points: 20
Post Options Post Options   Thanks (0) Thanks(0)   Quote nvs Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2010 at 9:38am
Thank you Denise! you are so resourceful too!
dx Aug 08
4 AC
4 Taxol
Lmpctmy
2 Taxol
Rad 32 s.
Mets Aug 09:both breasts, skin, pelvic bone, chest nodes.
4 cisplatine + taxotere + avastn;
3 gemzar + vinorelbine + avstn
Now: Ixempra+Xeloda+Avstn
Back to Top
EWKSeattle View Drop Down
Senior Member
Senior Member
Avatar

Joined: Oct 25 2007
Location: United States
Status: Offline
Points: 218
Post Options Post Options   Thanks (0) Thanks(0)   Quote EWKSeattle Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2010 at 9:26pm
I just posted on the other skin mets thread. 
 
I've been gone a long while, but I just checked back in.  I think the "debate" on this thread was interesting.  For what it's worth, I lost interest in this forum because it seemed like the most active/frequent posters were people who didn't have stage IV disease, and even some who didn't have cancer themselves at all.  I'm sure their hearts are probably in the right place, but it got under my skin nonetheless. 
 
I do think it demeans the experience of those who have been devastated by a Stage IV disagnosis when those who don't have mets presume that they understand what it means to live with mets.  I'm not saying that applies to all non-mets posters.  Just that when it does happen, it really gets under my skin.
 
Dragon lady's slinking back into her cave now. . .
Dx 05/06 Stage IIIC
Local Recurrence 01/07
Mets in opposite side axilla nodes 12/07
Mets to mediastinal nodes confirmed 11/08
NED March 2009-March 2010
Brain met March 2010.
Back to Top
Lillie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Jul 10 2009
Location: Eastern NC
Status: Offline
Points: 3609
Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 11 2010 at 8:26am
Dear Dragon Lady,

I praise the Lord daily for this site. What about all the new people, just being diagnosed, those in treatment, trying to make wise decisions about treatment. What about all the stage iv, iii, ii i's who need words of encouragement and a place to share their fears and experiences.

Shame on you for your selfish attitude. Cancer is not an all inclusive stage iv.

We are here for the living and the dying and all in-between's.

Love in Christ,
Lillie

Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
Back to Top
 Post Reply Post Reply Page  123>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.