Need thoughts from anyone who had a recurrence to skin

[yanyan]

I am meeting with Dr. Armando Giuliano at Cedar Sinai for a surgery consulation in January. Those on the west coast might have heard of him- a well known breast and thyroid surgeon. I would like to hear from someone who had a local/distant recurrence to skin on the treatment options.

My onco is strongly pushing for surgery to remove the affected skin area which is confined to my breast. I am totally OK with it but wondering if radiation is needed if they can't get a clear margin. If so, what kind of radiation? eg hyperthemia?

For those who have had affected skin removed and needed a skin graft, how was the recovery?

Has anyone had more than one recurrence to skin after invasive treatment for the 1st recurrence? ( surgery and skin graft )? if so, what treatment was given?

Thanks!

[tricia keegan]

I'm sorry I don't have advice to offer on this but wanted to send you good wishes and I'm sure someone else will be along to help you. I was fortunate in that I had Bowens disease spotted very early so all I needed was Photo dynamic therapy and I've been fine ever since and hope any treatment for you will be minimal.

[SoCalGal]

I had skin involvement and eventually removed skin and used Dorsi flap to close area. Was going to graft but when I was under they couldn't get clean margins. Wore cadaver skin for a week waiting for path report to confirm margins and then did a Dorsi flap to finish recon and close my chest. That was in 2003. I was clean until 2007. I should never have gone off herceptin but my onc was not aggressive enough. Looking back, I think that as long as I stayed on herceptin I did not have cancer. Without it, I had a few tiny local recurrences on the scar line. Then some rads to clean up the area. Photons and electrons. My team was at Cedars, too. Used Allan Silberman über surgeon and David kulber fantastic plastic. They both saved my life!

[yanyan]

Thanks Ladies for putting your valuable experience! I saw my oncologist yesterday and he mentioned even if my diseases becomes metastetic surgery to remove local skin mets is still a better choice for my own good.

Then i thought maybe if i didn't have a skin sparing mastectomy or didn't have expanders put in at the time of surgery, my recurrence would not have happened or maybe a much later time. Maybe it is for our own good that we wait a while before reconstruction. But again this recurrence gets me on xeloda and tykerb which maybe killing the residual cancer cells left from last surgery.

My skin mets have been stable on xeloda and tykerb since April . My oncogolist said we have the best odds if we can knock down as many cancer cells as possible prior to surgery. Many times if surgery is done too soon, recurrece happens fast. But it gets tricky with the time because we don't know when cancer cells become resistant.

Socalgal,i am sorry to hear about your progression. You did what you thought was right going to NY for treatment. I hope herceptin will continue to keep you stable. Did you check with Waterdreamer? She has been on TDM1 for almost 2 years and doing well. Maybe she can give you more info on the trial. She goes to UCLA for treatment.

[SoCalGal]

Yanyan-Thanks for the kind words and info...am thinking of adding perjeta and will see if doing so buys me some more healthy time while waiting for tdm1 to exit the pipeline :-)

[SoCalGal]

By the way, somehow lost this part of my reply earlier:

I have had two different kinds of reconstruction - was in a similar place, had to have bilateral, one breast/side not good candidate for implants due to prior years of radiation. I just didn't know what to do and each brilliant doctor gave me different options, none of which sounded right or wrong. All sounded scary and all were hard to figure out, even after talking to and seeing a bunch of different woman and their results. For me, the curve ball was finding so much cancer in what was supposed to be a local recurrence at the time, so it meant chemo after reconstruction, which was not supposed to be. Anyhow – I am just sharing my story and hope something about it will help you on your path…all is good now :-)

In spring of 2002, I choose a procedure that only a team at UCLA offered; called bi-lateral re-con free-flap MICRO nuero-surgery using my TFL's muscles (from upper side leg area). It was a HUGE surgery and as soon as I woke up I knew I made a horrible choice because I involved my legs, which were perfectly fine before I cut into them to make breasts. YIKES!

Then, due to skin lymphatic mets, they had to remove the involved breast and use my Latisimus Dorsi to close me up and get clear margins! None of these procedures were a one step surgery. They required refinement after weeks of healing and then the whole nipple re-constructing. It was an ordeal that sounded okay until you were going thru it. Again, in hindsight, it would have been better healthwise to be breast-less but not necessarily easier emotionally speaking.

All of these surgeries were finished in Jan 2003. It's been MANY years and I have had tons of time to use hindsight and it IS 20-20 just like the expression claims!

In a perfect world, women would simply remove breasts as a means of survival. This would be the easiest on our bodies and medical recovery. BUT it is then a hardship on our emotions - in getting dressed everyday, trying to appear normal, feel sexy, etc, trying to look and feel like ourselves. There is no easy answer or choice to this question.

I can say that the Dorsi flap was an easy surgery pain and recovery-wise and the scarring is not too bad. In my experience, what is bad about these surgeries, are the forever after-effects. I still have phantom itching around the scar lines. No bra is ever comfy for very long. My body on the dorsi side feels very tight - even though I am very limber, thin, in good shape, go out dancing, very active, do pilates, yoga, etc. To others, I look "great" but I do suffer with a lot of challanges from all the breast reconstruction. Many woman feel this just ("just!) from their lumpectomies, radiation and lymph node dissections. I think that scar tissue is an ongoing battle. If you don't continue to be active, scar tissue seems to tighten up, even years later. On the other hand, we all should use it so we don't loose it!

Well, pm me if you have any other questions I can answer…

[lk1]

Hi Flori :) how are you doing? So upset you didn't call me when you were in NY:(both Yan a nd myself are following your story as we are both in the same predicament pretty much. Hope I can reac you later to catch up with you my friend.

Xoxo
Laura

[SoCalGal]

Well, please don't take it personally, I had a lot on my plate and couldn't add reaching out to my list of things at the time. Just getting back my old (old) self now so look forward to reading your updates...
hugs!

[BonnieR]

Cute picture Flori! But I do miss the dog feet! You mentioned no bra being comfortable. Have you tried the Coobie? The best I have had. Check out their website. Not specific mastectomy bras but work great
Keep the faith

[Lani]

am looking for my post on imiquimod (sp?) in the meantime I used the search on the bar above and found this old post from me:

Thread Tools Search this Thread Rate Thread Display Modes
01-23-2008, 09:27 AM #1
Lani
Senior Member

Join Date: Mar 2006
Posts: 4,108
for Lolly and others who have had skin mets--photodynamic therapy with new platinum
compound

Light powered platinum more targeted & 80 times more powerful than similar cancer treatments [University of Warwick]
Researchers from the Universities of Warwick, Edinburgh, Dundee and the Czech Republic's Institute of Biophysics have discovered a new light-activated platinum-based compound that is up to 80 times more powerful than other platinum-based anti-cancer drugs and which can use "light activation" to kill cancer cells in much more targeted way than similar treatments.
The platinum-based compound known as "trans, trans, trans- [Pt(N3)2(OH)2(NH3)(py)]", or a light activated PtIV complex, is highly stable and non-toxic if left in the dark but if light falls upon it becomes much less stable and highly toxic to cancer cells. In fact it is between 13 and 80 times more toxic (depending on how and on which cells it is used) to cancer cells than the current platinum based anti-cancer drug Cisplatin. Moreover it kills the cells by a different mechanism of action, so it can also kill cisplatin-resistant cells.
Professor Peter Sadler, Chairman of the Chemistry Department of the University of Warwick, who led the research project said:
"Light activation provides its massive toxic power and also allows treatment to be targeted much more accurately against cancer cells."
The compound could be used in particular to treat surface cancers. Patients could be treated in a darkened environment with light directed specifically at cancer cells containing the compound activating the compound's toxicity and killing those cells. Normal cells exposed to the compound would be protected by keeping the patient in darkness until the compound has passed through and out of the patient.
The new light activated PtIV complex is also more efficient in its toxic action on cancer cells in that, unlike other compounds currently used in photodynamic therapy, it does not require the presence of significant amounts of oxygen within a cancer cell to become toxic. Cancer cells tend to have less oxygen present than normal cells.
Although this work is in its early stages, the researches are hopeful that, in a few years time, the new platinum compound could be used in a new type of photoactivated chemotherapy for cancer.


ABSTRACT: A potent cytotoxic photoactivated platinum complex [Proceedings of the National Academy of Sciencese]
We show by x-ray crystallography that the complex trans, trans, trans-[Pt(N3)2(OH)2(NH3)(py)] (1) contains an octahedral PtIV center with almost linear azido ligands. Complex 1 is remarkably stable in the dark, even in the presence of cellular reducing agents such as glutathione, but readily undergoes photoinduced ligand substitution and photoreduction reactions. When 1 is photoactivated in cells, it is highly toxic: 13-80 x more cytotoxic than the PtII anticancer drug cisplatin, and ca. 15 x more cytotoxic toward cisplatin-resistant human ovarian cancer cells. Cisplatin targets DNA, and DNA platination levels induced in HaCaT skin cells by 1 were similar to those of cisplatin. However, cisplatin forms mainly intrastrand cis diguanine cross-links on DNA between neighboring nucleotides, whereas photoactivated complex 1 rapidly forms unusual trans azido/guanine, and then trans diguanine PtII adducts, which are probably mainly intrastrand cross-links between two guanines separated by a third base. DNA interstrand and DNA-protein cross-links were also detected. Importantly, DNA repair synthesis on plasmid DNA platinated by photoactivated 1 was markedly lower than for cisplatin or its isomer transplatin (an inactive complex). Single-cell electrophoresis experiments also demonstrated that the DNA damage is different from that induced by cisplatin or transplatin. Cell death is not solely dependent on activation of the caspase 3 pathway, and, in contrast to cisplatin, p53 protein did not accumulate in cells after photosensitization of 1. The trans diazido PtIV complex 1 therefore has remarkable properties and is a candidate for use in photoactivated cancer chemotherapy.

01-23-2008, 10:19 PM #2
Lolly
Senior Member

Join Date: Aug 2001
Location: Oregon
Posts: 1,756
Thanks Lani for this new info. I checked into Photodynamic Therapy when these skin mets started acting up again, but so far it's only been given when a patient has been off chemo for a month. I'm hoping to keep it as an option, as there's a clinic here in Oregon which so far is only using it in other cancers but have indicated they may be expanding it's use to BC. Maybe they can trial this new compound!

<3 Lolly

[Lani]

looks like you already commented on it. Did you try it?


07-07-2012, 04:23 PM #1
Lani
Senior Member

Join Date: Mar 2006
Posts: 4,109
already approved topical treatment effective vs skin mets
article did not mention her2 status of any of the involved patients, however

Clin Cancer Res. 2012 Jul 5. [Epub ahead of print]
Topical TLR7 agonist imiquimod can induce immune-mediated rejection of skin metastases in patients with breast cancer.
Adams S, Kozhaya L, Martiniuk F, Meng TC, Chiriboga L, Liebes L, Hochman T, Shuman N, Axelrod D, Speyer JL, Novik Y, Tiersten A, Goldberg JD, Formenti SC, Bhardwaj N, Unutmaz D, Demaria S.
Source
Medicine, NYU School of Medicine.
Abstract
PURPOSE:
Skin metastases of breast cancer remain a therapeutic challenge. Toll-like receptor 7 agonist imiquimod is an immune response modifier and can induce immune-mediated rejection of primary skin malignancies when topically applied. Here we tested the hypothesis that topical imiquimod stimulates local anti-tumor immunity and induces the regression of breast cancer skin metastases.
EXPERIMENTAL DESIGN:
A prospective clinical trial was designed to evaluate the local tumor response rate of breast cancer skin metastases treated with topical imiquimod, applied 5 days/week for 8 weeks. Safety and immunological correlates were secondary objectives.
RESULTS:
Ten patients were enrolled and completed the study. Imiquimod treatment was well tolerated, with only grade 1-2 transient local and systemic side effects consistent with imiquimod's immunomodulatory effects. Two patients achieved a partial response (20%; 95% CI 3% - 56%). Responders showed histological tumor regression with evidence of an immune-mediated response, demonstrated by changes in the tumor lymphocytic infiltrate and locally produced cytokines.
CONCLUSIONS:
Topical imiquimod is a beneficial treatment modality for breast cancer metastatic to skin/chest wall and is well tolerated. Importantly, imiquimod can promote a pro-immunogenic tumor microenvironment in breast cancer. Preclinical data generated by our group suggest even superior results with a combination of imiquimod and ionizing radiation and we are currently testing in patients whether the combination can further improve anti-tumor immune and clinical responses.
PMID: 22767669 [

07-08-2012, 10:28 PM #2
karen z
Senior Member

Join Date: Apr 2008
Posts: 1,027
Re: already approved topical treatment effective vs skin mets
thanks for the post.

07-09-2012, 09:31 AM #3
yanyan
Senior Member

Join Date: Apr 2011
Posts: 215
Re: already approved topical treatment effective vs skin mets
Thanks for posting. I will share this with my onco. I wonder if this will be a better option than to have a skin graft for localized skin mets.