Skin mets
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This one is a bit graphic so if you are queasy it may be gross to read. So the skin is getting much worse and I now had flaky patches and lots of scans that seem to come and go daily I’ve stopped wearing a bra, as it’s my entire right breast and moving down to my stomach, and opt for a shirt and a sweater to help hide the very different breast sizes, shapes and position. Recently my skin mets have graduated to a new level of progression. Had anyone else had their skin mets start oozing? How do you care for the skin? My MO said to just clean with antibacterial soap and cover with no stick gauze pads. I’m also wondering what to expect from here on. I know it will get worse and I’d like to not be shocked.
How is everyone one else doing
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I might just be repeating something that was mentioned before. In case I am not, maybe this can be of some help.
Have y'all looked into this?
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Daniel, I am going to send this to my MO. Thank you so much for posting!
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You are very welcome. Hope it can help. Keep us posted
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I was thinking along the lines of Daniel as well. When my DH had a precancerous (skin cancer) lesion on his nose, he was given 5-FU cream. 5-FU is an older drug used in breast cancer although usually early stage. 5-FU is also the activated form of Xeloda. It seems it should also work in breast cancer mets.
I also would consider trying Doxil for those who have not.It avoids most body parts except the tumors and the skin. It ends up pooling somewhat in those regions. Perhaps it could make its way into to the skin mets.
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Parry I'm so sorry you are going through that. Mine fungated the first time and I know how horrible it is. My wound specialist had me clean daily with a saline solution, use silver rope dressing in the open wound (it absorbs all of the nastiness) and Silvasorb gel (I believe it is prescription only) with a dressing over it. I think the silver is to prevent infection which is a big concern when it ulcerates. I found that it dried up and healed better if I kept the dressing loose, keeping it tight to the skin seemed to keep everything too moist so after a while I only taped on two sides to allow for some air flow.
I'm about a third of the way through radiation treatment, which I suppose isn't an option if you had it previously. My RO wanted to keep it in reserve until I became chemo resistant (IBC has a high risk of becoming chemo resistant, and also radiation resistant). Mets kept spreading after we started so plan was expanded twice so far to include half of my left breast, everything on the right including a section of my back, from the middle of my neck for the supraclavicular node down to an area on my abdomen about three inches below my breast. Since I wasn't having a good response they are now using a bolus to increase the radiation on my skin. I'm trying to stay optimistic.
The 5-FU cream sounds like an interesting option. Let us know what your MO has to say about it.
Lori
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Thanks Lori! This gives me some things to ask her about. I know there is topical treatment for skin cancer and that those same meds are used also in BC treatment so why not try it for skin mets? I am also chemo resistant and have had over the max for radiation. I hope your treatments are working and stops the spread. I’m still hoping one of these treatments will work
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Parrynd1, I´m so sorry that you have to go through this. I have mets on 1/4 of my upper body - front and back, only two places oozing ... till now. I clean with water, only, and also use gauze pads, change every 3rd day.
I talked to a wound care nurse today: As long as the mets are only oozing gauze pads are sufficient. Once the mets/wounds start to smell or the ooze becomes greenish they are infected. They would then add an extra lining to the pad containing either coal (I think she said) or silver. I guess the silver is the stuff that Lorica knows a lot about. If this isn´t sufficient to beat the infection I understood that they have antibiotics for local use, and ultimately systemic antibiotics. I´m a foolish optimist, so I asked the nurse if the largest of my wounds/mets would ever heal to which replied: No, not at this stage. Admittedly, I cried for half an hour after I got home. I hoped at some point I might have one or two months without this &&%¤4.
I have had different breast sizes since my surgery in August 2017 and have been unable to wear a bra since then. In the meantime, I have tossed all my nice clothes (it really hurt!), and bought a cancer wardrobe: Soft loose, patterned shirts, preferably with chest pockets, loose sweaters etc. I hate my cancer wardrobe!
Lorica, I hope the treatment turns out to work for you - hang in there!
Daniel, thanks for the link. I´m presently participating at a clinical trial, but will have the article in mind.
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ADDK I'm so sorry, that's horrible that they said it will never heal. I had a large ulcerated wound the first time and it healed beautifully with chemo so I'm surprised that they would be completely negative. Hopefully you'll find the right drug that will work some magic. I understand how tiring it gets, in the almost 18 months since my dx I've only had clear skin for three months and it's hard not to sink into depression with such a visible and painful reminder of the cancer, it affects every aspect of your life. I still have a few more chemo drugs to try if this doesn't work, it was just spreading so fast again that after taxol failed my MO felt that trying different chemos in the hopes of finding one that works would take too long. IBC can spread wicked fast and I seem to have a particularly aggressive and stubborn form of it, lucky me.
What trial are you in?
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Lori, thanks for your kind words – I really appreciate your insight on all levels. Compared to your IBC my skin mets spread at a snail´s pace. How many radiation treatments do you have left, and can you see at least some effect? Have you had any gene tests made to check if immunotherapy may be an option for you? I´m in the HER2Climb trial: Xeloda+Herceptin+tucatinib/placebo. Tucatinib showed promising results for skin mets in the phase I trial. I may in the placebo arm, but since my hospital no longer uses Xeloda for BC by participating in the trial at least I get to try the combo Xeloda+Herceptin.
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We originally discussed doing 30 sessions, depending on how it goes, ADDK. I just finished #16 so I've just crossed the half way mark. As to whether or not we're seeing any results, it's not clear. Last week my RO cautiously said that she "thinks maybe" she's finally seeing some improvement. Many of the effects of radiation are similar to IBC symptoms, so it's tough to tell what's going on but I do think the areas of skin that had looked like they were about to break open are looking better now. After they added a bolus to intensify the skin reaction I developed a wicked rash everywhere except my axilla, which makes it even more difficult to detect skin changes. Hopefully the strong steroid cream she prescribed will clear up the rash. The lump I have on the side of my breast/under my arm doesn't seem to be shrinking at all yet. That's the tumor that got tangled in my brachial nerves last time, and my MO is very concerned about it happening again. Hopefully my RO will have more optimistic news for me when I see her tomorrow, but I do know that at least it stopped it from spreading so fast and if nothing else, that buys me some time to try to find a chemo that works.
HER2Climb seems like a very promising trial. Fantastic that you got in even if placebo arm since it gives you access to a drug you couldn't get otherwise. Why did your hospital discontinue Xeloda for breast cancer? In the US it seems to be a fairly standard treatment. I hope the Herceptin + Xeloda works well for you.
I was aware that they believe that Tucatinib may cross the blood/brain barrier, but wasn't aware that it may work on skin mets, which would be fantastic news. Weird how the rest of me responds incredibly well to Herceptin and Perjeta (liver and extensive bone mets completely resolved with H&P), but they've had no effect at all on my skin. My MO doesn't like having to use chemo as long as the rest of my mets are resolved because of the stress it puts on the body. Would be great to just add Tucatinib to the mix since toxicity seems mild. I'll have to keep that trial in mind for the future.
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Lorica, I try to keep my mind off cancer and treatment, so I don´t log in too often, hence my late response – sorry :-) How did your appointment with our RO go? I think it is positive that at least you see some areas are improving, and I hope the steroid creams will clear up the rash. I know there is a reluctance to surgically remove mets/lumps at stage IV, but is surgery completely out of the picture since your lump may tangle with your brachial nerve again?
We have public health care in Denmark, and our hospitals are run by five regional councils. Within some overall frames each region/ hospital decides the treatment offered, and my hospital has decided not to offer Xeloda for BC. This may be solely for financial reasons – I don´t know.
I keep expectations low, but placebo arm or not: I´m in the last week of my first cycle, and both of my two wounds are oozing much less, and the whole affected area is kind of drying out, so there is "something going on" at least. I have the next scan immediately after the second cycle.
I have found some articles in which oncologists hypothesize that there is a kind of blood/brain barrier issue with skin mets, which seems consistent with the preliminary results of the effect of tucatinib.
I think I read somewhere that the HER2Climb trial stops enrollment in May this year, if you consider signing up.
H+P resolved your liver and bone mets, and till now I have skin mets, only. We don´t die from our skin mets, so we should be pleased. I find it very difficult, though.0 -
Below from my book, "The Insider's Guide to Metastatic Breast Cancer" is a comprehensive description of therapies for cutaneous (skin) metastasis.
The book is available in eBook and paperback format on Amazon at https://www.amazon.com/Insiders-Guide-Metastatic-Breast-Cancer/dp/179586060Xand you can also request a complimentary .pdf copy by emailing me at bestbird@hotmail.comBest wishes!
- Cryotherapy, which refers to a treatment in which surface skin lesions are frozen, often by using liquid nitrogen, may sometimes be used to destroy skin lesions.From: http://dermnetnz.org/lesions/metastasis.html
- A new treatment called ElectroChemoTherapy (ECT) has been proposed as a complementary therapeutic technique for controlling cutaneous and subcutaneous metastasis.ECT is a non-thermal tumor ablation therapy providing electric currents (electric pulses) to cancer cells.The procedure increases cell membrane permeability and enhances the penetration of drugs into the cancer cells.Bleomycin, an "antitumor antibiotic" and cisplatin may be the most suitable candidates for the combined use with ECT.In one small observational study, 12 breast cancer patients with skin metastasis were given Bleomycin followed by the application of brief electric pulses to the tumor area.There was a Complete Response of 75.3%, a Partial Response in 17%, and no change in 7.7%.No serious ECT-related adverse events were reported.From[136, PMID:PMC3499246]:http://www.biomedcentral.com/1471-2482/12/S1/S6 For those with ulcerating breast tumors, electrochemotherapy may help control bleeding, pain and discharge, and the treatment can be repeated if needed.
- One small study indicated that Imiquimod Cream applied topically may be helpful against skin metastasis in about 20% of patients:From[137, PMID:22767669]: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580198/
- Medihoney: At the 2010 Symposium on Advanced Wound Care (SAWC) and the Wound Healing Society (WHS), an international conference drawing clinicians from all over the globe, a clinician presented a series of cases illustrating the benefits of MEDIHONEY® dressings not only in the treatment of fungating tumor wounds but in eliminating their odor and the stigma that goes with it. MEDIHONEY® dressings are a unique line of products whose active ingredient is medical-grade active Leptospermum honey (ALH) that can succeed in alleviating wounds when other treatments have failed.From: http://www.news-medical.net/news/20100417/Honey-beneficial-for-treatment-of-fungating-tumor-wounds.aspx
- A topical therapy called Miltex (Miltefosine) may be helpful if it is available.In a small study, 25 patients were treated, most of whom had been heavily pre-treated.A response was seen in 9 patients with skin lesions from metastatic breast cancer (1 complete response, 2 partial responses, 6 minor responses) giving a total response rate of 36%, with stable disease in 11 patients (44%) and progressive disease in 5 (20%). From[138, PMID:10602908]: http://link.springer.com/article/10.1007/s002800051114?LI=true and http://dermnetnz.org/lesions/metastasis.html
- In some cases, the literature about treating skin metastasis indicates that surgical excision, which might be followed by radiotherapy and/or systemic treatment, may be viable.And when surgical excision is not possible, there may be several therapeutic options such as laser ablation, radiofrequency ablation (which uses a needle that carries an electric current to heat the tumor to destroy it), or radiotherapy.
- REM-001 Therapy: This therapy may also be referred to as a photodynamic therapy because it includes light. There are three parts to REM-001 Therapy: a laser light source, a light delivery system, and the drug REM-001.The first step in the treatment is injecting REM-001 into a patient's bloodstream, which can convey it to the tumor.Then, a physician uses a fiber-optic wand to illuminate the tumor. Because the drug is photosensitive, it is activated only at the tumor site, reducing the possibility of severe side effects.In four Phase 2/3 clinical trials of REM-001 among 148 patients for whom prior radiation therapy failed, the complete response rate was 80 percent.From: https://breastcancer-news.com/2017/04/12/rem-001-benefits-most-women-with-skin-cancer-that-arises-from-breast-cancer/
- Silvasorb Gel: SilvaSorb Gel creates an antimicrobial barrier and is used for use on pressure ulcers, partial- and full-thickness wounds, leg ulcers, diabetic foot ulcers, graft wounds, first- and second-degree burns, and surgical wounds.One MBC patient with skin metastases indicated that she believed it helped her fungating skin met to heal.She gently flushed the area with a mild saline solution, applied the Silvasorb, and covered with a loose bandage. Admittedly, she is not sure whether to credit the product, her chemo, or a combination of both, but she is grateful that her wound is almost completely healed.
- Tucatinib (ONT-380) (Not Yet FDA-Approved for MBC Patients). In a very small study of 8 heavily pre-treated women with HER2 positive skin metastasis, Tucatinib was combined with Xeloda and/or Herceptin. One patient had a complete response, defined as a disappearance of all skin lesions. Three patients had partial responses, defined as a greater than 30% reduction in the sum of diameters of all target skin lesions from baseline. The remaining four patients had stable disease. As of August 2018, there is one recruiting clinical trial in the US for this drug (NCT02614794).From: http://www.medicalnewstoday.com/articles/313476.php Additional Tips for Those with Ulcerating ("Fungating") Breast Wounds: Leakage or discharges, along with an unpleasant smell, are probably the most common symptoms of a breast wound.These issues often arise due to infection. Therefore, patients may want to consider applying dressings that are very absorbent and which have been specially treated.Some wound dressings can be left in place for several days, but this depends on the amount of fluid leaking from the wound and where the wound is located. To help against leakage and odor, patients may wish to consider the following:
- Antibacterial Essential Oils
- Antibiotics
- Barrier film or cream
- Changing the dressings regularly
- Dressings containing:CharcoalMedical Grade HoneySilver
- Antibacterial Essential Oils: A study of 30 patients with head and neck cancer who had malodorous wounds found that rinsing ulcers with an antibacterial essential oil mixture (mainly based on Eucalyptus oil) twice a day caused the patients to experience complete resolution of the foul smell by only the third or fourth day of therapy.As a secondary effect, the oils had anti-inflammatory an in some patients' ulcers started to heal and achieved complete normalization. (A related source indicated the mixture was eucalyptus, melaleuca, lemongrass, lemon, clove leaf, and thyme in a 40% ethanol base).From[139, PMID:16785038]: https://www.researchgate.net/publication/6998989_Antibacterial_essential_oils_in_malodorous_cancer_patients_Clinical_observations_in_30_patients
- Antibiotics can help control any infection that may be present in the wound, which can help to reduce the smell. Applying antibiotic gels directly on the wound can also help.
- Barrier Film or Cream: Because the discharge or leakage from a wound can make the healthy skin around it sore and red, it's often helpful to apply a barrier film or cream, such as Cavilon, to the skin around the wound to protect it.
- Changing the dressings regularly can help stop the discharge from building up. Sometimes, only the top layer of the dressing needs to be changed. Substances in the dressings that may promote healing include:
Dressings containing charcoal can help to mitigate smell.
Dressings containing medical grade honey such as Activon can also help to prevent bacteria growth.From[140, PMID:PMC5098468]: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5098468/
Dressings containing silver can reduce the number of bacteria in the wound and help to control the odor.From[141, PMID:24832784]: http://www.cochrane.org/CD003948/WOUNDS_topical-agents-and-dressings-for-fungating-wounds-ulcers-caused-by-cancer0 -
Bestbird, wow - thanks a lot! It´s admirable that you did a book on MBC - a great resource for sure. I´m having tucatinib as part of a trial and think that at least for now the spread has stopped.
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What a nice resource! I want to bring up some of the options mentioned with my MO since she says there is nothing that can be done other than chemo. The MediHoney sounds interesting as well...has anyone here used it
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So my MO finally saw the open sores and she wanted to stop my new chemo! I only had 1 infusion so far and it was just last week. I guess the skin looks bad. They did give me this new dressing to put on called Xeroform Occlusive gauze. Not sure how I feel about it yet, but hopefully it helps. Has anyone else used it? I change dressing everyday, but feel like it looks more like a high school art project I did last minute...take everywhere and crooked gauze trying to cover all the right parts. Picasso might appreciate it, lol.Also got some better pain meds and that had been huge in QOL. Now to just find a better wardrobe for the bandaging and comfort and weird looking boobs.
Wishing you all a good week
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Parry, I´m so sorry that you have to go through that. I have no experience with your new dressing. Why does your MO want to stop your new chemo already? According to my MO they do not evaluate the effect until two cycles of any drug have been completed. Have you talked to your MO about the treatment in the link that Daniel posted? I´m starting to ooze all over so instead of numerous large bandages, I need a custom made bandage t-shirt lol.
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I’m not sure why she jumped the gun this time. I declined as I want to give it more of a chance. I even asked her how to tell if it was working or not and by what she described it seems like we really can’t tell yet. A bandage shirt sounds more convenient than managing a bunch of bandages at least! I was wondering if it’s good to try to expel some of the stuff that oozes out, like cleaning the bad stuff from a wound, but am afraid I’d make things worse. At least my MO said she had never seen skin mets go all the way down to privates or up onto the face. Those areas scare me...one more than the other.
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I hope that your MO comes up with an alternative soon. Perhaps you could talk to her about attacking the mets "from the outside" (electrochemo therapy etc.) in addition to systemic treatment. I`m not sure that your expelling idea is a very good one :-) I´ve googled pictures of skin mets, and even at the most horrifying ones the mets seem to have stopped spreading at the collar bone and hip, which has calmed me for now.
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That’s what has been so frustrating because I’ve brought up doing other therapies to attack, but she says they aren’t options due to co-toxicity or how extensive the mets are. My thoughts are could it be worse not trying? I’m trying to get a second opinion. I don’t feel like enough is being done. None of the pictures I’ve seen on google come close to what my skin looks like. I know it wouldn’t help but I wish there was a good resource to compare my skin with other cases of BC skin mets. I take daily pics to help monitor. I’ve stopped trying to mess with the skin at all, lol, no expelling for me. The skin is too messed up at this point and I’m scared to do anything with it at all.
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I see different MOs at every appointment. Some time ago, I had an appointment with the MO who according to Google did the first extensive research in electrochemotherapy (ECT). She told me that the area of my mets would be too extensive for this treatment. At a later appointment (with another MO), during which I signed up for my present clinical trial, the MO talked about applying ECT if the trial failed me. WTF!!??? Afterwards, I have found articles by oncologists using ECT concurrent with systemic treatment, and articles in which oncologist have successfully treated really large areas with ECT. Be more persistent to make sure that your MO makes qualified decisions. So glad you you´ve stopped messing with your skin :-) I´m waiting for the wound care nurse to come to my house to change my bandages. Home visits from a wound care nurse? Am I 90 or what?!
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Nothing like cancer to make you feel ancient! I wish there was a more streamlined method of care. Does your skin mets drain very much? I feel like mine do and I don’t even see much skin left when I change the bandage.
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If my left upper body were a blanket you would say: That´s an interesting pattern! I have areas with: just red (inflamed) skin, red skin and 3-4 mm bumps, bumps with scabs, and just wounds with no bumps. Presently, I have two oozing areas (10x10 cm bandages) with several wounds that are presently not bleeding, only oozing. I´m a very small person so with 2 x 10x10cm bandages I´m quite .... bandaged. The palliative unit at my hospital wants to increase my dose of pain meds (long-acting opioids three times a day together with another drug for nerve pain).I´m afraid if I accept an increase I´ll sleep 24/7. What pain meds are you on, and which SEs do you have from them?
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ADDK mine looks similar but I have patches of hard skin that you can’t see. Luckily I only have oozing and scabs on the one breast at the moment. I have what feels like hundreds of bumps and lumps small and large. I thought I might be crazy for how painful this is! Right now I’m taking 20mg of Roxicodone every 4hrs as needed (it’s almost always needed and bongs the pain to a 2/10 usually), but I’m supposed to be getting 12hr morphine. I’m scared since i already get so tired on the Roxicodone however it will be nice to get something that relieves more of the pain and is less pills.
As for SE’s it’s just been the drowsiness.0 -
I'm sorry you ladies are having such a difficult time. Having gone through that experience the first time I really understand everything you are going through. I really hope you find a treatment that works.
Rads seems to be working...finally. For three weeks there was no response despite using a bolus to intensify the reaction for one week. My RO was beginning to think it would be radiation-resistant too. Didn't help that apparently I'm allergic to calendula, and every time I put on lotion the rash would get worse and worse despite using steroid cream my RO prescribed, until it was so bad that I wasn't sure how I could continue. I finally made the connection in week four, switched to aloe and the rash started clearing up. Until then it was hard to tell what was from the cancer, what was from rads, and what was rash due to allergy! Finally we started to see some response in week four (the areas with mets actually turned white while the rest of my skin was turning pink), then all of a sudden after #22 the reaction was TOO severe. I lost a substantial amount of soft tissue, more than they had ever seen before, and my skin was really burnt in some areas. My RO wanted me to take a break to see how my skin would hold up (since it continues to intensify for days after), and it took them a week to re-do my plan because of the amount of soft tissue I lost. Tomorrow I go in for set up/simulation again, and then restart treatment. I started in January, it's now March and I probably won't be finished until April. Going in every day is starting to wear me out and I'm a little frustrated that just when we started to see results everything was put on hold for a week, but as long as it's working I can stick it out.
Parry if you can get it, the fentanyl patch is nice because it lasts for three days and smooths out the pain rollercoaster. I never had any bad side effects from fentanyl, and it was easy to quit when I no longer needed it. I was on the patch and morphine (and gabapentin for nerve pain) for a while after my original dx when my IBC ulcerated, after a while I dropped the morphine and just used the patch.
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Lori glad the treatment is working but damn that’s so frustrating! I’m worried about the 30mg morphine pills as the pharmacist was warning us that’s i might stop breathing and need this inhaler medicine just in case. I’ll ask tomorrow about the fentanyl patch...get me off this roller coaster!!!
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Lori, your reaction sounds horrible, but it´s great that you do see some good results from the treatment!! Which Gabapentin dose did you have? My palliative doctor wants me to increase my Gabapentin dose, but I´m hesitating, because I can´t figure out whether it is the Gabapentin or the opioids that make me feel somewhere between dizzy and drunk (without the fun, though) a couple of hours after I have taken the drugs.
Both my MO and my palliative doctor have explained to me that it easier to control pain than beat it once it has become really bad, hence the long-acting opioids that I´m taking. I guess it makes sense, but I hate feeling constantly doped. The fentanyl patches sound like a good idea, but as long as I´m able to swallow pills I can´t have them. BTW I have 8 pills for breakfast and 11 pills for dinner - and snack the pain killers in between :-)
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Lol snack the pain killers in between. It’s funny and sad at the same time. I’ve been wanting one of those pill pockets that separate am, noon and pm pills. I have Gabapentin for something cancer related a year or so ago...my MO hasn’t mentioned taking it to help with the skin mets at all though. What does it help with
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ADDK I'm on 600 mg right now for neuropathy, which my MO said is a fairly low dose. I have a feeling I'm going to have to increase it soon. I take it all at night so I can sleep (instead of 2x a day), at night my feet feel like they are on fire and the gabapentin knocks it down enough for me to sleep. When I first started on it, it was because I had a tumor tangled in my brachial nerves and wowee the pain was intense - 10+/10. I stopped taking the gabapentin once my skin healed and the tumor shrank out of the nerves (same time I started weaning off the morphine and then the fentanyl), but by then the neuropathy kicked in so two months later I was right back on it.
I'm willing to bet it's the opioids that make you feel that way, unless you're on a very high dose of gabapentin already (it can make you drowsy but I haven't experienced that at all). I was amazed at the difference when I was able to get off the morphine, didn't realize how foggy it made my brain. But hands down I'd rather take morphine than percoset because percoset makes me feel stoned in a bad way. I didn't want something as strong as morphine this time because the pain wasn't quite that bad, so my MO prescribed the percoset. I hate it so much that I was only taking it when the pain had me in tears, and then only before bed because it makes me so dizzy. But if you have problems with gabapentin (neurontin), some people do better on Lyrica.
My MO said the same thing, once you fall behind the pain it's really hard to get it under control again, so it's important to take pain meds on schedule and not wait until you have pain again. You need to take it before the pain rears its ugly head. The key is to get the pain to a tolerable level and then keep it there. That's what I liked about the fentanyl patch.
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I’ve heard the same thing about pain. Same for nausea. I’m scared to take the morphine...if it is better, side effects wise, than Percocet then that is encouraging. I can be a person instead of the living dead. Brains
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