Skin mets
Comments
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Lori, thanks for sharing! In addition to the nerve pain I used to have a stabbing pain, and I think this is the reason that they added the opioids: I only take 3 x 300 mg gabapentin a day, so at my next appointment I´ll talk to them about increasing gabapentin and dropping the opioids. Have you restarted your radiation treatment? I sincerely hope that the treatment turns out successfully.
Wishing both of you a nice week end with minimal pain (we skin metsters really are a small crowd).
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ADDK I suspect there are more here with skin mets who either don't discuss it or maybe haven't been properly diagnosed because there are so many different ways it can present. I've read research that showed between 6-20% of women with metastatic breast cancer get skin mets (some of the studies were autopsies, with skin mets discovered after death), I think only those of us who have a hard time getting it under control are here talking about it, maybe it's not as big of a problem for someone with a slow-growing cancer. To be honest, if it wasn't for my first go-around with this I doubt I would've recognized what was going on this time and started pushing as early as I did. Even my MO who has been with me since the beginning told me he didn't think I had anything to worry about because it didn't "look" like cancer to him. It's one thing if the mets present as nodules, that's fairly easy to diagnose. Mine are erythematous and this time it started as just a few pink splotches on my breast that didn't show any reason for concern on an MRI. Eventually it looked like a bad rash. Mine have never developed nodules even when it ulcerated the first time. It was only my past experience that led me to keep pushing when it kept getting worse, eventually getting a new biopsy that confirmed it. There are many research papers on the difficulty of recognizing and diagnosing skin mets.
Just restarted rads on Thursday. It was only supposed to be setup/simulation for the new plan, but since I made sure my skin was clean (no lotions) they went ahead and treated me while I was there. I have a large painful scabby spot under my arm, but other than that my skin seems to be holding up well.
Hope you have a great weekend too!
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Lori, I´m so happy for you that you could restart treatment, and that all things considered it´s now manageable for you. Apart from the fact that your cancer spread extremely rapidly, I had a similar experience with my MO: I had only finished Herceptin for stage II when I asked my MO if I should worry about a red rash looking spot on the skin over my expander. I would nothing, she said. Since I was supposedly cured it took her four months to decide to do a biopsy. At that point it was all over the skin over my expander.
I read somewhere that skin mets more often occur with Her2 pos. disease, and from what I read I got the impression that in general they don´t appear until the very last stage. This would explain why both our MOs thought that we should not worry, and it would also explain why there is no standard treatment for skin mets. I know it sounds cynical, but I´ve come to the conclusion that it´s a research area of too little prestige and return potential.
I thought my clinical trial with tucatinib would do wonders, but I´m not so sure anymore. I´m half way through the second cycle. I think my mets have not spread any farther, which is, of course, positive, but for that the pain has really gone up. Not sure whether this is a good or bad sign. Well, I´ll know when I have a scan later this month.
From my stage II treatment I know it gets exhausting to go for radiation treatment every day. The treatment seems to work for you, so keep up, go with joy and beat this crap!
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ADDK I'm keeping my fingers crossed for you that the trial is working and your scan confirms it. I have noticed both times I've dealt with this that the pain level increases when treatment is working, so I've convinced myself that increased pain in the area of a tumor when I start a new treatment is a good thing because it means that it's working and killing the cancer (I envision cancer cells screaming as they die!) but it does depend on the type of pain. Stopping the spread is a very good sign.
I've also read that most think skin mets appear in the very last stage, but having gone through this once before I refuse to accept that thinking. I've also read that they can never be healed once they ulcerate and I know for a fact that is not true because mine healed completely the first time. In September 2017 my doctor told my husband to call my family in because I wouldn't make it until Christmas. I'm still here 18 months later and doing well other than this (in addition to the skin mets I have a palpable tumor that developed in axilla. Although it has shrunk, it's still there). My liver and skeletal mets have resolved, so if I can get this under control again I know I still have more time ahead of me where I'll feel good.
There needs to be more research into why so many who are HER2+ have a problem with skin even when the rest of the body responds well to targeted therapy. For some reason the skin seems resistant to targeted therapy for many of us (skin is immune privileged). There is another person in the Herceptin thread dealing with the same issue (actually her husband posts). Our stories mirror each other so closely it's scary.
This is just one of the papers I found citing the need for more research into it because happens often enough. This could be written about me - "...diffuse cutaneous metastases from HER2-overexpressing breast cancer occurring despite a dramatic response in liver and bone, respectively, during treatment with anti-HER2 antibodies Trastuzumab and Pertuzumab". https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4847805/
The paper says 24% of advanced breast cancer patients develop skin mets, most of them HER2+, and that the incidence of skin mets occurs more frequently when the patient has both Herceptin and Perjeta rather than Herceptin alone. Makes me wonder if I should drop the Perjeta. It's also reassuring that this paper differentiates from skin mets that occur during end stage progression and skin mets that occur despite dramatic systemic response to treatment.
Thanks for your motivating words, they really help. I started rads in January and won't be finished until April, so it's really starting to take a toll on me. I was originally supposed to be finished at the end of February.
Wishing you a positive scan that shows good results from the trial.
Hope everyone is enjoying a great weekend!
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Many of the resources I’ve read also say skin mets are appearing near end stage patients. My MO straight out said she doesn’t think I’ll make it another year. I hope she is wrong, but aside from the skin mets I have extensive lung mets so not sure she is too off with that. I don’t put a timer on my life. I have today and hope I have tomorrow too
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Parry, I´m so sorry about the opinion of your MO. My MO cannot and will not say at all how much time I´ve left on the grounds that each patient is different, and in each case the course of the disease is different. This is wise and so true - nobody really knows. I`ll continue googling "skin mets" in search of a miracle treatment …..
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Well she usually isn’t so forward with information/statistics about how long you’ll live, but we were talking to her about moving to a new state. Our time line concerned her so she brought it up as buying a house would be involved and some other expensive moving parts. It was still a shock and a reminder.
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Parry, from a rational point of view your MO is absolutely right: To be on the safe side none of us with a terminal disease should make any drastic longterm plans or changes. From this point view we should all sit back, do nothing, but wait to die. I think it´s a balancing act. As long as fulfilling our dreams do no harm after we are gone we should go for it. We go through hell with treatments to keep ourselves alive. If we stop living because we´re afraid of dying it all makes no sense. I truly understand that you MO´s statement was a punch in the gut that fills you with sadness. However, if moving feels right for you, and if it would not leave your loved ones in financial ruin it´s definitely still an option.
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ADDK thanks for the perspective. I think you are right about stopping your life to die. My Husband wants to raise our kids in Houston once he has them. It’s also a good place for his career and with enough affordable land to have all our family in one place (maybe even cul-de-sac) instead of all over the US. Sometimes I just panic and ask what am I even doing!? Cancer has made me more emotional than I have ever been my entire life.
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Parry I'm sorry you are going through that. My MO told my family that I wouldn't see Christmas 2017 and I'm still here, so I try to stay focused on beating the odds without denying my reality. As for buying a new home, my philosophy is that I'd rather die having done the things I wanted to do. It sounds like the new home in Houston is important to you and your husband, so if you are physically, emotionally and mentally up to making the move, and your husband understands the ramifications if your situation were to suddenly change, I wouldn't let my doctor's opinion hold me back.
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Thanks everyone. My friends and family agree we should and my husbands mom even paid off one of his student loans for us to help. I guess we won’t know if we could have made it to our dream home unless we try.
Onto skin news...I see a huge new area that is going to be coming off soon. I do t think I’ll have much skin on my breast ones this area goes. Chemo does seem to be slowing the skin mets, just not killing them. We need the John Wick for cancer
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I feel almost guilty for posting this update when the rest of you continue to have worsening problems, but I do want to share the info for anyone who might come along in the future and has the option of radiation available.
This week both of my oncologists were very happy to see how much progress rads is making and how good my skin looks. There is no better feeling in the world than seeing a smiling oncologist after 6 months of nothing but bad news! Next week will bring me to 61.2 gray, and as long as my skin continues to hold up well (she checks my skin every few days now) we will probably do one more week to bring it to 70.2 gray. My labs haven't wavered, still rock solid. The spots where the mets were have turned white & leathery, looks funny in the midst of pink radiated skin, but I'd rather having scarring than active mets. My skin is actually less red now than it was three weeks ago, my RO said it's the difference between the vascular red of the cancer and now the gentle pink of radiated skin Tumor lump isn't gone but it has shrunk drastically and is softer, most importantly it's no longer under my arm where it was constantly irritated. Pain is gone now (other than the typical radiation stinging) and I'm finally starting to feel a bit like myself again. Time for me to get back in the gym and start fighting off the fatigue.
Hope everyone has a wonderful weekend!
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Lori, I’m thrilled and so happy for you that the rads are working!! Getting back to the gym ... wow! I`m green with envy - in the good way. Go for it! :-)
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Hi Ladies,
I have been here since 2006. Started with Stage 1, ILC, ER+, PR-, HER-. Had lumpectomy, radiation and Tamoxifen. Five years later, it came back to same breast in skin and under nipple. Had dose dense chemo to watch the skin mets dissappear followed by double mastectomy and immediate reconstruction involving a LAT flap from back. Took Arimidex for five years and then it came back again to LAT flap and skin around scar and on breast up to collar bone. Had another double mastectomy and all the skin on left side removed. Had to have skin graft from upper left thigh to cover area. Now I'm on Ibrance and Femara for two years so far with no recurrence. I spoke with a specialist from Iowa City Hospital and he thinks that ILC would show up all over me if I had skin biopsies. I have blood tests every month and MRI, PET and CAT rotated every three months. I don't think I have breast cancer anywhere except in my skin but who knows. It's comforting to see there are a few of us. I tried to find others back in 2010 and no one was here. An interesting sidebar is that I found out in 2016 via genetic panel test that I'm positive for the ATM mutation. This is something that should never be treated with radiation. Thus, I think this is the reason my breast cancer spread to skin. The area that was radiated has been removed over the years due to cancer. Please get tested....it's just a simple blood test.
Take care,
Nancy
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Hello, I also have numerous skin mets which grew in just 3 weeks while I was on the second cycle of A/A the first three months the A/A showed shrinkage in areas, the second cycle was a nightmare, extreme pain everywhere. Plus it allowed the cancer to grow un controllably. Seems like I was on a differeent medicine.
Dr put me on Havalen. No scans yet. Onc said this is my laast cheme, my body isn't strong enough for any of the harsher chemo. I've been on every hormonal there is each worked 3 monts and stopped.
He did say not to put lotion on rash it would keep it moist and causing spreading. He say sometimes it helps to put a talc power on it. It drys it out and stops the itching
Blessings to all.
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