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wayover20

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Reply with quote  #1 
Hello everyone!  My first post here although I've been lurking for a while and liked what I saw.

I was originally dx'd in Jan 07 with trip neg ILC, clear nodes, one close margin. BRCA 1 & 2 both negative. Underwent rt mast. then 6 month course of AC & T and given all clear. No rads.  Fast forward to Aug 08 when I end up in ER with SOB and ct finds a 7.3CM mass to mediastinum and biopsy says same trip neg.  33 rads then onto abraxane and avastin starting Nov 08.

Just before the nov chemo started--like a week before--I started with itching and these pebble like bumps across my abdomen and ct confirmed 9 total nodules, biopsy confirmed bc as well, trip neg still.  Lucky for me after the very first dose of A/A the nodules couldn't be felt at all and I completed 3 cycles then ct showed 99% resolution of nodules and the only on lefts was a sub-centimeter.  The decision was made to decrease the abraxane to 1x month and avastin 2x month (every 2 week schedule) down from 3x month abrax and 2x month avastin.

Now the latest ct done in june shows abd nodules back 12 of them so we increase the schedule back to usual 3week on 1 week off hoping to resolve them again.

(sorry so long)   My onc said if this wasn't working after the first cycle which was last week then we'll have to move onto gemzar/carboplatin.

I don't think it's working since I can still feel about 5 of them and although they are still under the skin they cause a little discomfort why lying down or if I wear snug waist pants.  This is my off week, end of first cycle so I go back and see my onc next week.

My concern is if I go onto another chemo I'll be using up options that aren't too many of for us trip neg.  The chest mass has shown continued "interval decrease in size" (I call it shrinking) with each and every ct done since November so I'm good there. 

How urgent is it to treat the skin mets while balancing treatment options remaining??  Does skin mets indicate something more sinister like pending organ mets?

Thanks for any advice in advance.
Pat

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DoreenF

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Reply with quote  #2 
Hi Pat: I don't have answers to your questions but wanted to welcome you to NoSurrender -  I'm glad that you like what you see here and that you came out of lurkedom to ask your questions.   I'm sure someone will come along who can help with some additional information for you. 

I hope you'll stick around so we can get to know you.
Hugs,
Doreen


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nosurrender

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Reply with quote  #3 
hi Pat! Welcome!!

I am so sorry about your skin mets.
My first diagnoses was triple neg ductal and the second one was lobular and er++
I bet it was unusual to find out your lobular was TN.
I think that may work in your favor though because lob tends to progress slower than ductal. Hopefully this can help you fight the skin mets.

I know a woman who has been battling them for about 4 years now. She does not have a spread to her organs. She has been on a few chemo combinations. She even went back to one she was on previously and responded well to it. There is also a special skin mets cream that got good results and ASCO I think reported on it this past June. I will see if I can find the study for you.

I will ask our Constantine to check in too on you. He is up on every new drug combo for us.

So glad you are here and posting.

We are a great family here. Happy to have you join us!

hugs
g


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Calico

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Reply with quote  #4 
Welcome Pat,
this is a great place to find comfort and information

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wayover20

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Reply with quote  #5 
Thanks everyone!  Gina thanks for checking on that....do you mean miltex?  I'll wait to see what you find. Thank you so much.



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MicheleS

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Reply with quote  #6 
Hi Pat! Welcome.  This is a GREAT place for support and positive thinknig!! You'll love it here.

I know that there are a couple ladies in the TN part of BC.org with skin mets.  Be warned though... that's a great site but sometimes there's a lot of negativity around the TN threads.  Just a warning...

xxoo, Michele
wayover20

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Reply with quote  #7 

Hello Michele and thanks for the welcome.   I know what you mean...there's quite a few pots boiling over as we speak--over there.


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Reply with quote  #8 

Hi Pat,

Welcome to my favorite place.  Thanks to No Surrender's creator, founder, and a true, blue, down-to-earth, supremely sensitive, smarter than smart admirable, kind-hearted, Angelica Gina, whose birthday is today...HAPPY BIRTHDAY if you are reading, Gina!   Contributors include many who are well-versed in the languages of Breast Cancer, Research, and ultimately, Experienced;  having been through the far reaching arms of this Disease.  Edge & Fellow Breast Cancer Survivors, Warriors, & Friends are following Gina's lead by tending No Surrender's bountiful gardens filled with the blossoming seeds of survival, joy, hope;  a beneficial, and informative network.  This is a rest stop for the seekers, searchers, and loved ones; for those in need of answers, hope, health, love, friendship, and encouragement.  If you cannot find what it is you need here, someone will re-direct you to a source that will help.  It is a safe harbor. 

My diagnosis of IDC, 1.7 cm. x 2.5 cm (leggy), TRIPLE NEGATIVE Nasty Octopus tumor, 2mm from the chest wall, however, a 3.5 cm oval SKIN BIOPSY was removed as well., since the thing was popping out like a Turkey Thermometer found, ironically, on Thanksgiving Day, 2005.  Grade 3, Stage 1b or 1c, depending on who looks at it, resulting in a Partial (sort of, Lumpectomy, but not really) clean Sentinel Nodes (4), but it was messy, and resulted in a gigantic Hematoma in the Breast, and a Seroma in the Armpit, and all resulted in pain, December 15, 2005, followed by A/C x 4, followed by Taxol  x 12 wkly, followed 32-33 Rads.

Unless one is trained to understand the medical terminology, or knows someone who is, or has ~ by chance and by golly, an incredibly, exceptionally caring human being who just happens to be this lucky person's physicians, or at the very least, the patient is a super-intellect who knows Chinese, Interplanetary Verbal Communication, Latin, Greek, and Cyberspace Tectonics, Transcendental Meditation....and Morse code!  Ooooh, we are so lucky here, we have Gina, Constantine, and a long list of extraordinary minds!  Thank goodness, they have been HERE to clarify, simplify, define, organize and communicate what so few are able to put into context!

Never-mind...do I sound bitter?  I am not.  Reading your post is upsetting, infuriating, and down-right aggravating!  You appear to be an intelligent person who knows the spectrum variants found in the diagnostics  of Breast Cancer.  Why haven't the Surgeons, PCP's, Oncologists, and Plastic Surgeons recommended a Surgeon specializing in Dermatology, and Skin Cancer?  I know the answer...it's not their problem, right?  I asked a Surgeon about consulting several different physicians for Endocrinology, Cardiology, and Pulmonary, as well as Dermatology.  (I am continuing to research and find answers to a long, and apparently unanswerable,  unhealthful  list of oddball symptoms). All too often, there's a bad-connection on the doctor's walky-talky~ wires are crossed, there's a communication problem...someone needs to buy some new batteries, re-string those bean cans, pull the wire in a little more, too much slack; buy a new microphone, pull out the earplugs, or find Interpreters. 

In fact (kidding aside), the physicians who treated my Breast Cancer were exceptional,  remarkable, and superior; they had problems with speaking the language called "Human Being", a dimension many/all physicians know little about on planet Earth.  They hear the humans speaking, but it all sounds like grunting or gibberish to them, and as a result, they are unable to answer our questions. 

Lobule, or Ductal, it's still Basal Subtype, Triple Negative Cancer.  As Gina stated, if it's growing more slowly, the important thing is to get this monster under control. 

You have come to the best site on the web.  A positive attitude is mandatory for getting through any/all Cancer Treatments.  So is a well-informed, patient.

Good luck, and please let me know if I can help in any way!

Love,
Indi



MicheleS

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Reply with quote  #9 
Pat~
I can believe it.  I tried to get support from the TN forum (and did get some!) but ended up getting stressed out.  I do go daily to the chemo forum.  There's a Feb 2009 thread that is great.  A lot of wonderful ladies post there.  (Living4today posts both here and there and she's TN too.)

Anywhoo, welcome.  I hope that Edge sees your question soon.  I know that he'll have some great ideas for you!!
Michele

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Reply with quote  #10 

Pat:

 

Here are  my thoughts, adding  to the already exceptionally shrewd suggestions made above by the always insightful members of the No Surrender community:

 

Long Menu of Potential Therapies

First, it is  common - and  understandable - to be concerned about depleting potential therapy options, but as I noted most  recently in my response (Abundance of Weapons) to a posting from Lesley there is in fact a notably large and varied  spectrum of  chemotherapeutic and chemobiological regimens via  combinations of (1) taxanes paclitaxel (Taxol), docetaxel (Taxotere), nab-paclitaxel (Abraxane), (2) CMF extensions such as enhanced CMF (e.g., E-CMF (using  epirubicin), (3) FEC extensions such as  enhanced FEC (like FEC-T and FEC-XT), (4) liposomal anthracycline-based regimens using PLD/Doxil (pegylated liposomal doxorubicin) or Caelyx, (4) gemcitabine (Gemzar)-based regimens (like GT (with taxane), GD (with Doxil), GEA (with epirubicin and Abraxane), GDT (with Doxil and taxane), GP (with platinum), G-E2100 (with taxane + Avastin), among numerous others), (5)  capecitabine (Xeloda) based regimens, (6) vinorelbine (Navelbine) based regimens, (7) ixabepilone (Ixempra) based regimens (including IX (with Xeloda) and IB (with Avastin), (8) platinum based regimens, (9) irinotecan (Camptosar/CPT-11) based regimens (especially in my mind , CPT-X (with Xeloda) among many many others, in various motivated and evidenced combinations, along with DD (dose-dense) or metronomic schedule variants of these, to which we  can add (10) biological therapy such as bevacizumab (Avastin)  to  synergize any agent, doublet or triplet, or other biologicals (EGFR inhibitors like cetuximab (Erbitux)), or HDAC inhibitors, etc.) on and off-trial.

 

Skin (Cutaneous) Metastases

Second, the field is somewhat split on treatment  of cutaneous (skin)metastases from breast cancer, some favoring direct cutaneous mets treatment concurrent with other systemic therapy, others favoring a passive approach based on the rationale that standard systemic therapy itself should  work on the cutaneous mets along with other involvement, and there hasn't  to date emerged a clear consensus on this issue (I stand modestly in favor of direct  treatment). 

 

As  to direct therapy, there are  four progressive options: (1) local therapy with a 6% solution of miltefosine (Miltex, Impavido), (2) photodynamic therapy (PDT), (3) pulsed irradiation / brachytherapy, and (4) electrochemotherapy  (ECT) with cisplatin typically used in skin mets from breast cancer, but the common starting point  is topical Miltex therapy. 

 

Optimal Oncotherapy

Finally, as to optimal oncotherapy, although 3wk-on/1wk-off Abraxane + Avastin is an  effective and established regimen, given progression albeit on  a  different schedule of the regimen you  might consider shifting to a new and  different regimen.  Your oncologist has suggested GP  (gemcitabine (Gemzar) + platinum) where the platinum would be  carboplatin, and one alternative  to  this I  would suggest is GX (Gemzar + Xeloda), based on the recently reported findings of the Werner Freier team data presented at ASCO 2008, where GX (aka, GEM-CAP) was  found superior to both GV (aka, GEM-VIN using vinorelbine (Navelbine), and superior to GP  (aka, GEM-CIS using cisplatin), in terms of a trend towards superior PFS  (progression-free survival) and OS (overall survival), with no  significant differences in toxicities; however, GP with carboplatin remains  a reasonable choice.  One additional tip: whichever regimen is chosen (GP or GX), I would advise continuing the bevacizumab (Avastin) which can maintain synergy, so this would yield  a final choice of GPB or GXB  (B = bevacizumab).

 

And of course there are numerous additional options, as I suggested above, both via extension of the Gemzar-based regimen, or introducing new agents such as Doxil or Ixempra, among many others, all with a supporting evidence base.  So as I noted here, and before:  abundance of weapons.

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

wayover20

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Reply with quote  #11 
THANK you Constantine and ladies for your responses and advice!!  I see my onc tomorrow to see what the next step will be, however EDGE, I have a question for you, one that's been on my mind regarding chemo regimens....

Is there a sort of algorithm that oncologists use to determine which chemo to use next or is it more their knowledge and experience with situations that determine their choices??   My onc is the researcher for the large oncology group and is up to date on all the current studies and literature so I have full faith in her but of course continue to do my own research.

I will post more after I see my onc tomorrow to decide what route to go from here but I like your (Edge) advice about keeping avastin and changing to Gemzar and carboplatin. 

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nosurrender

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Reply with quote  #12 
Pat, I have searched and searched for that skin mets treatment I thought I saw, but what I was referring to was a new clinical trial for a new skin mets treatment. I had gotten confused. It is being conducted out of the NYU medical center. I sent them an email to see if they are doing it anywhere else.

I am hoping and praying all goes well today for you
love
g


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wayover20

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Reply with quote  #13 
Ok, thanks gina!

Well I saw onc today and after she examined the current state of the skin nodules decided to stay on course with the 3/1 abraxane avastin, starting cycle 2 today.  I agreed since in the past  several days I've noticed the nodules are there but not nearly as easily palpated and they cause me no itching (never have) or discomfort at all.  I am comfortable with this but will alert her at once if things seem to be going in reverse.  Oh yea, I'll be doing a left hip MRI first week of august due to really bad pain affecting my QOL.   Yes it's bad when you wall like a cripple and can't enjoy a simple Walmart trip.  Hopefully it's nothing except a side effect of abraxane but heck it hurts!

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nosurrender

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Reply with quote  #14 
Pat, I am so glad you have a good plan!

When I did Abraxane I felt like my hips had rocks in them. Or like I was a rusty version of the Tin Man.

One thing my onc told me is that the long term pain from Abraxane doesn't last long. He said something funny that sounded more like a fortune cookie:
"If it goes away then it isn't permanent." LOL

Big hugs,
love
g


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wayover20

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Reply with quote  #15 
gina, I saw the NYU trial for aldara (imiquimod) and also wondering if anyone close to texas was doing it.  I did read somewhere that it was a prescription only med available here in US as its used for genital warts.  I wonder if my onc or primary dr. would give me an RX?

So when we read these clinical trials.gov does that mean those are the only places running them or they open them to other US clinics/doctors to run them and send back data? 



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nosurrender

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Reply with quote  #16 
I am not sure of the answer, but I think your doctors can request a trial of the meds if they are forward thinking docs.
Even if you are not part of the actual clinical trial, maybe you can try the drug. If it has been proven to be safe for another use, and it may zap skin mets, I don't see why you couldn't take it.
Are you in a big cancer center or teaching hospital? That may help.
hugs to you
g


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