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deborrob

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Reply with quote  #1 
Hi all,

Have been reading with interest the posts etc. on this site.  Was wondering if someone has some advice for me (especially Edge.)

 
I was diagnosed in early 2009 with Triple Neg. IDC Stage IIIB.  Did lumpectomy with lymph node removal (cancer in 3 lymph nodes) dose dense ACT, 35 radiation.  Burned very badly and as soon as my skin healed back I noticed a rash that started on my surgical scar.  Thought it was part of healing from radiation, but as it got worse, I had a biopsy done.  Came back positive for IBC with skin mets.  All last year I was on chemo trying to get the skin mets under control to the point where a mastectomy could be performed (I am under treatment with MDA although I actually take my treatments locally in Dallas).  Eventually late last year they determined I could go for mastectomy.  They removed the breast and all of the skin that had been infected with cancer (a huge area) and replaced it with a tram flap to close the wound.  They told me they had got everything out with clear margins.  They said that 90% of the cancer was dead from the chemo.  I could not do radiation because of the tram flap and because of the earlier radiation.  One month later after surgery, a rash developed again.  At first I didn't notice it as my skin was so red from the surgery and so on.  However, had it biopsied - positive again for skin mets - triple negative.  Had a PET scan, but it is difficult to tell at this stage if there is cancer anywhere else besides just the skin because of the inflammation from the surgery, however, the doctors don't think so.

So the chemos I have been on are:
ACT for original IDC diagnosis
Ixempra/Xeloda for IBC - couldn't tolerate Xeloda (dropped my blood pressure dangerouisly low).  Stayed on Ixempra alone for a bit, but had progression of rash.
Abraxane/Avastin - a couple of rounds - had progression of rash
Carbo/Gemzaar - this worked way better than anything else and killed a lot of the cancer, but after 4 rounds had a bit of progression again
Eribulin - did two rounds before surgery and am now back on it - not sure it is working as I have three new spots

I am devastated, of course, to have had such a huge, radical surgery that essentially didn't work.  I am concerned that I have already been through a number of chemos and that I am running out.  I am not sure the Eribulin is really working that well (I'm on the second round after surgery) and can't tell much difference and I have some new spots.

 
On my next visit to MDA I have an appointment to see if radiation can be done - doc says just a superficial radiation to the top of the skin, not sure of details of this since I have already had extensive radiation after IDC diagnosis.

I have read a lot on this site about different chemos and things that have never been mentioned to me as treatment options and I wonder why that is. 

Mostly, I am starting to give up hope of ever being free of cancer.  I feel like that the rest of my life may well just be spent trying to control these skin mets with little success (going by success up to now).

Does anyone have any advice/ideas that I may discuss with the doctors? 

Your time is appreciated,
Deborah

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Deborah Robertson
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Reply with quote  #2 
Hello Deborah and welcome to our forum.

Please don't give up hope. I know you have had a long, hard struggle. But, as you wrote, there ARE lots of different chemo-combos out there helping immensely.

Let me look into this and get back to you with some ideas.

hugs,
g


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MicheleS

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Reply with quote  #3 

G- what abt that topical creme... gosh, I can't remember the name. shoot... I think it might have a platin in it? maybe?

MicheleS

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Reply with quote  #4 
someone from bco used it for a long long time to control skin mets.

Deborah-  I will go hunting for the name.  It may take me a day or so.
xxoo
MicheleS

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Reply with quote  #5 

a quick pubmed article gave me this article:

http://www.sciencedirect.com/science/article/pii/030573729090054J

I will dig more.  There are lots of options.  I feel sure.  xxoo
edge

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Reply with quote  #6 
Deborah:

Due to outstanding obligations, I am a bit delayed in getting back to you, my apologies, but should be able to do so within 24 hours at the outside.

In the meantime, please be reassured there are at least a couple of dozen highly effective options and regimens still to be explored! and I will provide you with guidance on the most promising, for both TNBC and IBC, and also discuss the issue of skin metastases.

So there is indeed hope - at No Surrender there always is, along with an uncommonly wise and giving community to help you through the journey.


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com



edge

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Reply with quote  #7 

Deborah:


Here are my  thoughts and guidance:

 

The Classes of New Options

Given your IBC and TNBC tumor biology and your clinical (treatment) history to date, these are some promising options to explore:

 

(1) Liposomal doxorubicin/LD (pegylated: Doxil, Caelyx; non-pegylated: Myocet).  Anthracyclines remain, along with taxanes, one  of the most active  classes for IBC and TNBC, and anthracycline rechallenge appears to be unproblematic in it follows one year or more after initial exposure and this would be with the new generation liposomal anthracyclines, not the standard agents.  (Your sole anthracycline exposure appears to have been back in 2009).  LD is often combined with cyclophosphamide (Cytoxan) to yield LD-C but it can also be coupled with any of the third generation agents (LD-V with vinorelbine is one possible option).

 

(2) Docetaxel (Taxotere) - so far you have only been exposed to paclitaxel-based agents, namely paclitaxel (Taxol) itself, and nab-paclitaxel (Abraxane), and docetaxel with a distinct clinical profile can sometimes be highly effective independent of previous taxane exposure.  It is exceptionally versatile and It can be combined with one of the third generation chemotherapeutics, in your case either gemcitabine (Gemzar) or vinorelbine (Navelbine) to yield either GT or VT (T=docetaxel) or with an anthracycline (epirubicin or liposomal doxorubicin, to yield either ET or LD-T), or with a platinum (either carboplatin or cisplatin), to yield PT. And given your previous exposure to carboplatin, a PT regimen if elected should be cisplatin + docetaxel.

 

(3) Vinorelbine (Navelbine) - you are chemonaive to this effective and well-tolerated agent, and it can be enhanced with the docetaxel into the well-evidenced VT regimen, or with cisplatin (VP regimen), or liposomal doxorubicin (V-LD).

 

(4) Enhanced CMF - this is gaining favor in the treatment of TNBC (Cliff Hudis at Memorial Sloan-Kettering being a big fan) and can often be surprisingly effective, especially when enhanced with an anthracycline like epirubicin (called the E-CMF regimen).

 

(5) Metronomic Capecitabine (Xeloda) - called metro-X, this is an effective regimen that minimizes adverse effects by low-dosing (1500 mg flat-dose (not BSA, or body surface area)), allowing  it to then be combined with an anthracycline, a taxane (into metro-XT when docetaxel is used), a third generation agent (XV when vinorelbine is used), or a platinum like cisplatin (XP regimen).  And studies have shown that it can be rechallenged after previous exposure to standard-dose capecitabine and still be effective, and at a metronomic level, it is unlikely hypotension would emerge). 

 

One Possible Lineup, and Some Suggestions

Of these,

 

  • docetaxel with vinorelbine (VT) or
  • docetaxel with cisplatin (PT), or
  • vinorelbine plus cisplatin (VP), or
  • liposomal doxorubicin plus docetaxel (LD-T), or
  • liposomal doxorubicin plus cyclophosphamide (LD-C), or
  • enhanced CMF (E-CMF)
  • metronomic XT (metro-XT) using metronomic capecitabine + docetaxel, or
  • metronomic XT (metro-XV) using metronomic capecitabine + vinorelbine, or
  • metronomic XP (metro-XP) using metronomic capecitabine + cisplatin), or

 

may be the more promising ones to explore. 


And note:

  1. that the first six are unique in combining two agents both of which you are naive to, and
  2. those of these which use cisplatin may serve double duty, both for systemic disease and also for activity against skin mets, as I discuss below.
  3. of course, any capecitabine rechallenge should be under close hypotension monitoring;
  4. eribulin may still be found effective, depending  on what response on scans, and on your marker levels, indicate;
  5. gemcitabine (Gemzar) may still be a fallback option, under a triple regimen like the famous GET (gemcitabine  + epirubicin + docetaxel) -  it may simply not have been optimally deployed in combination with carboplatin that was used.

 

Skin Mets (Cutaneous Metastases)

Breast oncologists remain with no wide consensus on treatment of cutaneous (skin) metastases (regardless of location) from breast cancer, with one group favoring direct cutaneous mets treatment done concurrently with other systemic therapy, the other group favoring an indirect approach, reasoning that standard systemic therapy itself should  work on the cutaneous mets along with any other breast cancer involvement. But as to direct therapy, there are  these progressive options:

 

- Local Therapy for Skin Mets

(1) local therapy with a 6% solution of miltefosine (Miltex, Impavido) - this is not easily available in the U.S. but possible it can be prescribed off-label.

 

(2) photodynamic therapy (PDT), which has  been used in the treatment of cutaneous metastasis of breast cancer with complete response rates ranging from 13.5% to 40% in candidates exhibiting  only small volume disease.

 

(3) imiquimod (Aldara), based on a case study from Ulrich Hengge and colleagues in Germany; unfortunately, few breast oncologists are familiar with this specialized option [there is a recruiting clinical trial of imiquimod at the Fred Hutchinson Cancer Research Center in Seattle (Topical Imiquimod and Paclitaxel Albumin-Stabilized Nanoparticle Formulation in Treating Patients With Advanced Breast Cancer), using imiquimod concurrently with nab-paclitaxel (Abraxane), but  given progression on Abraxane, this is not an optimal choice].

 

Less common are these interventions:

 

(4) electrochemotherapy  (ECT) with cisplatin, typically used in skin mets from breast cancer,

(5) pulsed irradiation / brachytherapy.

 

- Systemic Therapy for Skin Mets

The indirect  approach, on the other  hand, is via systemic therapy in general (endocrine and/or chemotherapy).  If the mets are a special  form called carcinoma erysipeloides, a cisplatin + 5-FU (called CDDP-F) regimen is used based on some early successes [Hinrichs and colleagues, Br J Dermatol 1999].  But for hormone-negative disease, including TNBC, the most widespread approach to skin metastases is indirect management through optimal systemic therapy for TNBC itself.  As to skin-met-specific systemic agents, the data is sparse but I consider both:

 

(1) capecitabine (Xeloda) based on the case series of Kostandinos Sideras and colleagues at Mayo), and in your case a metronomic schedule would be safest, and

(2) cisplatin based on the retrospective review from Uger Co┼čkun and colleagues at Gazi University in Turkey,

 

as attractive, given that both of these are also highly active in TNBC disease, and my guidance typically is to try them in that order.  

 

Conclusions

As you can see we have a broad spectrum of potential options to pursue with data to suggest efficacy in TNBC and many also effective in IBC, and there are as I show several distinct options for addressing the skin mets locally, although here certain systemic agents I identify may play double duty.  All of these should be explored candidly with your oncologist, and you may also want to seek a second opinion.

 

Best fortune to you.



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

 

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Reply with quote  #8 
Dear Deborah,
As you can see our marvelous Constantine has provided you with a multitude of options and new hope
I just wanted to add a small study/journal article I found that may be worth keeping an eye on for further results:
http://www.nanolity.com/index.php/nanomaterials/nanomaterials-news/nanoparticles/1718-imiquimodabraxane-combo-effective-for-skin-mets


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deborrob

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Reply with quote  #9 
Thank you so much Constantine and everyone who replied to my post.  I will print this off and take it to my docs for discussion.

I have asked several times about the topical treatments of Miltex and Imiquimod and have been told that the area of involvement in my case is too large.  I have an area about the size of my hand that is covered in rash plus several other smaller spots.

Constantine, do you know if topical treatments can be used on large areas?

I also have a couple more questions. 

A friend of mine on another forum sees Dr. Christofanelli at Fox Chase for treatment.  She says the Dr. C has told her that Eribulin (Havalan) is no good for triple negative.  I am wondering, if this is the case, why my doctors have chosen to try it.  I honestly don't feel it is working, or certainly not as well as Carbo/Gemzaar and I wonder if I am really wasting energy and time on it.

Am I correct in believing that the supplement regime recommended in Edge Cam is not something that will interfere with chemotherapy?  I started taking some of the supplements (Curcumin, Reish, D3, EGCG) , but stopped when I had progression of the rash.  However, it is impossible to tell whether the progression happened because Eribulin is not working or whether there is interference with the supplements.  My onc prefers no supplements as she said there is no evidence of their interaction or not with chemotherapy.

Lastly, Constantine, or anyone else, do you know of any information/websites on skin mets.  I have found very little information on it, and frankly it seems even the doctors are somewhat vague on the skin mets issue.  It is pretty upsetting for those of us afflicted with it to have very little information on it.  It seems that little study has been done into skin mets, or am I mistaken?


Again, I thank you all for taking the time to consider my case and I sincerely appreciate your thoughtful and considered replies.


Deborah


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Deborah Robertson
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Reply with quote  #10 

Deborah:


My apologies for the delay in responding due to professional obligations.

 

Thank you so much Constantine and everyone who replied to my post.  I will print this off and take it to my docs for discussion.

 

I have asked several times about the topical treatments of Miltex and Imiquimod and have been told that the area of involvement in my case is too large.  I have an area about the size of my hand that is covered in rash plus several other smaller spots.

 

Constantine, do you know if topical treatments can be used on large areas?

Although not small, the area you describe is more challenging to treat but is not necessarily beyond topical intervention: an average fist might be very roughly about 60 cm2 (6 cm x 12 cm) in extent, and topical imiquimod can be deployed in such cases (and beyond), as can miltefosine (Miltex) although this is not as yet approved in the U.S.  Oncologists might be concerned with reactions and adverse events (AEs) in large areas - not an unreasonable concern - but I am aware of data even on areas as large as median size of 285cm2 (James Del Rosso, J Clin Aesthet Dermatol, 2009) where  imiquimod was generally tolerated with minimal AEs on very large areas, so it remains an electable option (one imiquimod sachet can be applied to a skin area up to 386  cm2)., and although efficacy is higher in smaller lesion areas, it may still provide some appreciable benefit in larger ones.

 

I also have a couple more questions. 

 

A friend of mine on another forum sees Dr. Christofanelli at Fox Chase for treatment.  She says the Dr. C has told her that Eribulin (Havalan) is no good for triple negative.  I am wondering, if this is the case, why my doctors have chosen to try it.  I honestly don't feel it is working, or certainly not as well as Carbo/Gemzaar and I wonder if I am really wasting energy and time on it.

 

Am I correct in believing that the supplement regime recommended in Edge Cam is not something that will interfere with chemotherapy?  I started taking some of the supplements (Curcumin, Reish, D3, EGCG) , but stopped when I had progression of the rash.  However, it is impossible to tell whether the progression happened because Eribulin is not working or whether there is interference with the supplements.  My onc prefers no supplements as she said there is no evidence of their interaction or not with chemotherapy.

An understandable concern, but she is in error as the pharmacokinetics of the specific CAM components of Edge-CAM. And of course the concern is highly selective: she neither inquired nor disjoined you from dozens of traditional agents that not only as likely could raise adverse interactions, but many of which also bear FDA cautions or warnings to that effect (among the many points I discuss in my review of Drug Interactions in Oncology).  Ultimately, however this ultimately is the patient's decision, in consultation with an oncologist.    

 

Lastly, Constantine, or anyone else, do you know of any information/websites on skin mets.  I have found very little information on it, and frankly it seems even the doctors are somewhat vague on the skin mets issue.  It is pretty upsetting for those of us afflicted with it to have very little information on it.  It seems that little study has been done into skin mets, or am I mistaken?

There's quite a substantial literature on skin mets although (1) highly technical, and (2) more often found under "cutaneous metastases" rather than "skin metastases", and virtually all of it is within the medical indices like PUBMED.  As to more general lay-oriented sites, the best tends to be the New Zealand-based site DermnNet NZ: see this entry  on Skin Metastasis. In addition, Medscape has done two relatively accessible pieces, one on: "Dermatologic Manifestations of Metastatic Carcinomas" and another more specific one on "Skin Metastases in Breast Cancer".

 

Again, I thank you all for taking the time to consider my case and I sincerely appreciate your thoughtful and considered replies.

Glad to help.

 

Deborah



Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com    

Mbutlerp

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Reply with quote  #11 
Hi Deborah,
I think I will soon be in your shoes. In Mar 2011 I was diagnosed with TNBC. I had Taxol for 12 weeks, then A/C for another 12 weeks. After that, I had a lumpectomy followed by 39 radiations. 4 months later, I was in a clinical trial but received only Cisplatin, not PARP. Within 2 months, I had what docs thought was fat necrosis above the lumpectomy. It was actually a 5.5 cm TNBC tumor by the time I had a mastectomy and Latissimus dorsi flap reconstruction. Within a week, I developed sepsis in my blood. I survived that with 4 weeks of daily IV Vancomycin. In April, I discovered a pimple near the mastectomy scar on original breast skin. When it didn't go away, dr Biopsied and it is TNBC now in my skin. I'm currently getting Xeloda and Ixempra, locally but my care is through MD Anderson too. Yesterday I found another tiny pimple on my belly. I'm devastated. I'm hoping MDA will find the magic bullet for us.
Hugs
MaryAnn

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MaryAnn Butler-Pearson
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Reply with quote  #12 
Dear MaryAnn,
How are you doing? I hope that your current treatment of Xeldoda and Ixempra are helping.
I am terribly sorry for all you have gone through.
hugs,
gina

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edge

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Reply with quote  #13 

MaryAnn:

 

As you have seen, there are a number of promising interventions available which I described above.

 

And one of these, imiquimod (Aldara), has just made some dramatic breakthroughs: Sylvia Adams and colleagues at the NYU Cancer Institute [Clin Cancer Res, Dec 2012] conducted a prospective, nonrandomized, phase II trial of topical imiquimod (5%) applied 5 of 7 days per week, for a duration of just 8 weeks in a small cohort of 10 breast cancer patients with  skin metastases. Although all 10 women were heavily pretreated and all had also failed multiple different prior treatments, 2 patients achieved partial response (PR) and another five achieved stable disease (SD), yielding a clinical benefit rate (CBR) of  70%.  This approach was well tolerated with limited grade 1 and 2 local and systemic side effects.

It is clear that this, along with prior data I discussed, demonstrates that topical imiquimod is an effective  treatment modality for breast cancer with skin/chest wall metastasis, with exceptional tolerability tolerated, and stands an a new immunotherapy given that it promotes a proimmunogenic tumor microenvironment in breast cancer. Furthermore, preclinical data suggests enhanced results when combination with radiation.  But this trial shows that even on its own, topical imiquimod stimulates local antitumor immunity and induce regression of cutaneous metastatic disease, while being easy to apply, well-tolerated, and generating a proimmunogenic tumor microenvironment within  metastases.

 

I should also note that the trial investigators have launched a clinical trial (Toll-like Receptor (TLR) 7 Agonist and Radiotherapy for Breast Cancer With Skin Metastases), currently open and recruiting, of precisely the combination regimen I noted above as confirmed preclinically, namely topical imiquimod plus radiotherapy for women with skin metastasis from breast cancer. It's being conducted only at NYU.

 

Given these highly promising results, I would strongly advise you to explore the option of imiquimod (Aldara) with your oncologist, whether in clinical practice or on clinical trial.  It has always beeen my belief that imiquimod will form a critical component of any treatment of skin metastases (from from basal cell cancer and melanoma, as well as breast cancer and other solid tumors), and it is already taking its place in that capacity, along with chemotherapy and radiotherapy.

 


Constantine Kaniklidis

Breast Cancer Watch

edge@evidencewatch.com

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