Skin mets
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SierraPineapple the only good thing I can say about skin mets is they are a very visible indication as to how well treatment is or isn't going, but it's hard to describe the terror of actually seeing the cancer destroy your body right in front of your eyes to someone who hasn't gone through it. Liver and bone mets were easy for me to forget about most days, but skin mets really mess with your mind. I think I'm about to go back on pain meds so I can sleep too. I was on fentanyl and morphine the first time around (it was tangled in my brachial nerves too) but after weaning off opiods I've been trying to hold off for as long as possible before starting anything stronger than ibuprofen again. None of us expected me to be back in this position so soon.
I spent several weeks getting scans, biopsies, doing consults. Systemic treatment/chemo is the only option on the table for me right now. I've been told 3 times so far that they don't recommend surgery because they believe it would do me more harm than good. My RO doesn't want to radiate my skin in this condition (it would be a large area) and wants to save that option for down the road as a last resort when I stop responding to chemo, plus radiation wouldn't address the lymph nodes in my abdomen that aren't responding to the H&P. Skin grafting doesn't make any sense for me as long as the underlying cancer is still growing, and even if we get the primary under control I doubt I would do it since my IBC is so persistent. Can you imagine having that large of a skin graft, only to have the mets return in a few months? Hormonals have never been on the table because my cancer is too aggressive; maybe one day if I can manage to stay stable for longer than a couple months. My MO doesn't want me on a taxane forever because of the cumulative SEs, so if the Taxol works again this time I think I'll be moving to Kadcyla next and see if that buys me some time. If the Taxol doesn't work this time, not sure what we're going to do, I guess try a different chemo.
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hello
I am so glad to see this thread is active again. I also have skin mets. About a 2in by 1in area on my r.breast which still has the primary tumor in it. (never had surgery) Just last week my ONC said this is not "skin cancer" but my original tumor coming thru my skin. Small pink nodules appear and then in a few days they turn a light grey crusty appearance I have been on Ibrance/ful for 2 mos. But the skin mets are still growing. (also have a few small lung nodules and 3 places in my skeleton) My Onc. said surgery is not possible. No mention of radiation either. But she is retiring at the end of DEC. so I"ll start to see a new ONC who perhaps has a more positive attitude. The only good thing my ONC said was lets do another biopsy and see if original dx is same. ER+ P+ he-
I have been reading extensively on the FUl/IBRANCE thread and the consensus is it's too early to tell if this combo is working. EVEN IF THERE IS PROGRESSION.. So I just started my third cycle of Ibrance/ful. still very hopeful. Wishing everyone on this thread al the best of luck in finding a treatment that works for you. Prayers for all.
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Lori that sucks. I've read about electrochemotherapy for skin cancer and maybe mets, but haven't seen my MO to talk about it. Maybe it could be an option for you? I don't know much about IBC, but have thought the same thing regarding the skin graft...how sad I would be if it just came back to the new skin. I've heard promising things regarding Kadcyla so hopefully it works well when you have to move to it. I also don't like to take more meds if at all possible...I never thought the skin would be the most painful so far! I'm surprised they wouldn't at least try hormonals, but I guess I'm not an MO and we just have to trust them. Makes me feel like a kid sometimes just doing what my mom says.
I had a lumpectomy the first time around and was hoping to clear up my lungs in order to do a double mx but with the skin that's off the table for now.
Snooki I've heard of tumors growing through the skin and not necessarily skin mets so maybe it really is just your tumor? My little skin nodes started out pinkish like pimples, then have a lighter color weed area near the top. They aren't crusting or oozing (yet). My MO wants to use the skin instead of scans to monitor how my treatment is working. It doesn't seem to be doing anything right now for the 2 weeks I've been on it. She said it could work very slowly, but I feel like it should at least stop spreading so aggressively after 2 weeks! Did your MO give you a reason for no surgery? Mine said because of the lung mets. Honestly I'd risk it to get these things off of me. My lung nodes at still under 10mm but the breast tumors are large and less cancer should Ben better since there is less cells being made and spread. Maybe that's just my own logic, lol.
I've also read about a topical chemo for skin cancer that uses the same chemo I've gotten for BC...I'm not sure why it wouldn't be used to treat BC skin mets so that's another one for MO. I've dealt with primary BC, menigeal mets, lung mets, and for some reason the skin it just very difficult for me to accept/deal with. You ladies are so brave I'm glad we can connect and talk here.
Has anyone been worried about accessing their chest port with chest skin mets? I’m worried it will push cancer cells to my heart. Another thing to talk with MO about...
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LoriCA, I too have a brachial plexus tumour. It got zapped last year and disappeared long enough for me to get 80% arm use back. It came back again this year and got zapped again but I am pretty sure it hasn't achieved much. I am in constant pain because not only is the stupid tumour wrapped around my nerve roots, I now have a waisted muscle in my scapula from lack of use, a frozen shoulder and lymphedema. How did you manage to get your pain under control? Do you have full arm use? I am at a point that if I thought it would help I would get my arm amputated and I have a pretty strong pain threshold.
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Hi everybody, I´m really glad I found this thread. I also have skin mets (inflammatory rash) – recurred during stage II while on Herceptin.
I had Herceptin , Perjeta and Navelbine as first line IV treatment, which helped a little for a couple of months. Switched to Kadcyla, have had three cycles – and the skin mets are still growing. I have an appointment next week to see if I qualify for a trial.
Once upon a time –before mastectomy – I hated the idea that "something" was growing inside my. Now I know that there are worse things! Two months ago I stopped looking at myself in the mirror, so I really don´t know what I look like now, but the area of pain is steadily growing.
Has anybody tried Lapatinib? In my country it is only given together with a chemo drug, but my MO is reluctant to the idea due to diarrhea.0 -
ADDK I also avoid looking. It’s just upsetting. Have you talked to your MO about radiation? I’m going to meet with my RO next week to see if it’s possible even though the area already had 30 rounds. Other than that all I can do is chemo according to MO, but I’ve heard of other things like electrochemotherapy and topical treatments that use the same chemo drugs as I have gotten before being stage 4. Not sure why these aren’t presented as options
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Snooky yes definitely not "skin cancer". Since IBC starts with skin involvement mine is the primary BC breaking through the skin too. Sorry you are dealing with it too but good to have another voice here and I'm glad to see this thread active.
SierraPineapple my port is on the opposite side and thankfully the skin over my left breast hasn't been affected (yet?), not even last year when the tumor spread into my left breast, the skin on that breast stayed clear. If I had skin mets on the same side as my port I would be nervous too, definitely something to discuss with your MO. Let us know what he/she says.
Tennille I'm so sorry to hear that you have it in your brachial nerves too and that you've been dealing with it for so long. I know how bad that pain is (10/10,and I have a high pain tolerance too), and losing use of the arm really made it hard for me to stay positive about everything. My arm also would swell like a balloon from my shoulder to my finger tips if I didn't keep it elevated (not lymphedema, the nerve involvement somehow affected circulation). And of course I'm right-handed and it was my right arm that was affected. I couldn't drive, I couldn't even hang out on the computer or my phone because I couldn't type, all I could do was watch TV, I was in too much of a fog from the pain meds to even concentrate on reading a book. Took us a while to find the right combination of pain meds that worked for me but my MO has been great about palliative care, says I can't heal if I'm in too much pain, I was on gabapentin for the nerve pain and a fentanyl patch plus morphine sulfate every 4 hours. The patch smoothed things out so I wasn't on that rollercoaster of meds wearing off and waiting for them to kick in again, it really was the key for me. I had an amazing response to taxol and regained 100% mobility. As soon as the pain started backing off and some of the mobility started to return, my MO had me exercising with very light weight to build the strength up and work on improving mobility. After that I stayed very active with strength training, Qigong for flexibility, etc. Of course now we're worried about it happening again because it's growing so fast, which was another factor in deciding to go straight to chemo. I've already lost about 5% mobility, but I have a big growing lump on the side of my breast and under my arm that is painful, I'm hoping that's the cause and that it isn't in the nerves again. I'm typically a very active person so losing use of my arm was incredibly difficult for me to deal with, can't bear the thought of going through it again. What treatment are you on currently?
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Sierra,
My situation "might" be mostly non compliance on my part. I'm 64yr old and have suffered for the last 40yrs with horrible bouts of clinical depression, panic attacks, OCD. (Hus left after 30yrs couldn't take it anymore) So, when I found my lump in 7/2017 (my mother had just died, and two family members had died ) I just said Lord, please not cancer. I cannot deal with it. And I felt that he said it would be ok,, just follow him. My first visit with my ONC, I asked if surgery had to be immediate, or if there was room to breathe. She said yes, there was a pill Arimidex, which would hold off the cancer while I worked on my emotional problems. The plan was the anti-hormal for 6 mos. I started exercising, changed my diet to vegan and I actually was happy for those 6 mos. Then I saw my ONC again and said I feel so good why can I not stay on this little pill? And so I did, But then 1 yr later I had a CT scan, and nodlues s were found in my lungs, couple mos. later cancer found in four areas of my bones. Also, advanced arthritis, degenerative disk disese, and I had two contusion fractures.!!!!!! Wow. A lot of change in just 6 months. (The skin mets were not there from the beginning. They appeared one year after initial dx. So, in 6 mos, I went from Stage 2 to stage 4. Still taking it all in. I'm now on Ful/Ibrance but my ONC does not think it is working. (but it's barely been 2 mos.) When I asked her about surgery NOW, she said, oh no it's way too late. Then she went on to give me a lesson on how my skin mets could/would ulcerate/fumigate/ etc.etc. She said at that time perhaps surgery for pain reduction. This was just last week and at no time did this ONC give me hope. Thankfully, she's retiring at the end of Dec. and I'll be transferred to someone else.
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LoriCA, I am currently on carboplatin as I had SIRT 5 weeks ago. I'm left handed but everything is right sided. I was literally balling my eyes out last night because of the pain. I had tried so long to stay off opioids and now I'm counting down to next dose. It's awful.
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Oh Tennille, I'm so sorry, I understand exactly what you're going through. I cried for hours at a time because the pain was so intense, apparently even in my sleep, until we found the right pain meds. I'm usually a stoic when it comes to pain so it frightened everyone to see me in that condition. I pushed back hard against opioids in the beginning too, I was worried about becoming addicted and I didn't want to spend the rest of my life in a morphine haze. Even taking it every 4 hours instead of every 8 hours didn't work, just gave me some short-term relief for an hour or two. The fentanyl patch is what finally got me off "waiting for the next dose" because it lasts for 3 days, you might think about asking it. . The one thing I learned about pain management is that you need to stay on top of the pain and never get behind it. The problem (for me) with taking pills only is that when it starts wearing off all you can think about is when you can take the next dose, and then you have to wait for it to kick in, and then it starts all over again. That might be okay for mild pain, but when the tumor is tangled up in the nerves and pain is at 10/10 that doesn't work. It was a non-stop rollercoaster of excruciating pain that becomes all you can think about. Adding the patch smoothed all of that out and got me off the rollercoaster. And despite my concerns I found it easy to wean off the morphine and fentanyl when I no longer needed them (still on gabapentin for neuropathy). I don't know what options you have in Australia, but if your MO isn't adequately addressing your pain, do you have access to a palliative care team? Please give some thought to asking about the patch, it really saved my sanity.
I hope the carboplatin works as well for you as the taxol did for me and that it does so quickly. Sending you a big gentle hug, I really do understand the nightmare you are going through & I wouldn't wish it on my worst enemy.
Lori
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My pain hasubeen to the level you speak of, but I do know that I prefer doing what needs to be done to manage the pain. For me it became a matter of general quality of life. Lori is spot on about staying ahead of the pain. I think of pain like quicksand. It’s hard to get out of once your in it with what cancer is doing. I’m hoping your treatment gets to working so you don’t need to be on pain management for too long! I’ve been taking Tylenol every night just to sleep bc of the skin mets. Cancer really sucks
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SierraPineapple, according to my MO my skin mets are too extensive for both radiation (had 25 rounds during stage II) and electrochemotherapy.
Perhaps you should talk to your MO about electrochemotherapy? I have read somewhere that two different chemo drugs can be applied. My hospital has a – I think still on-going - clinical trial with calcium instead of chemo.
Wish you all some pain free moments!0 -
Yikes ADDK I just read up on ECT and it sounds absolutely brutal. I can't imagine going through something that actually makes all of the symptoms even worse (pain level, oozing and scabbing) before it starts working. Why do so many cancer treatments have to be absolute torture?
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ECT sounds more like a surgery and I think it involves some numbing or sedation. It’s not an easy breezy treatment I don’t think, buuuut it is one more option for some. I don’t think I will be able to do more rads but I want to see my options. I’m getting married in january and in the last month the mets have pushed to where I can’t cover them with my wedding dress. I was so hoping to have a no cancer wedding...I guess that’s too much to ask.
Lori I think the treatments go to show how bad cancer is if this is what’s needed to fight it. At least for now.
ADDK thanks for the trial info. I was going to start searching for one that treats skin mets...calcium...sounds interesting. I wonder if you can do it alongside regular treatments? I’ll post if I hear or see anything interesting.
On another note does your skins mets feel like a sharp & burning pain? The skin also feel hypersensitive/itchy but if I scratch even a little the pain is incredible. At first I was hoping it was a sign of it dying, but now I think it’s just bc it’s worse. Oh plus the swelling and hardness of that breast now even though it’s the skin the whole breast seems to be affected
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Sierra Pinea, in answer to your question why we chose against the skin graft : 1) even the surgeon did not really think it was feasible 2) he checked with a plastic surgeon who suggested various possibilities but it all seemed very complicated - removing skin and muscle rom the back (why muscle ?) -- 3) healing it would have been a nightmare, I have only just now healed from the mastectomy - it took more than three months to heal. 4) the skin inflammation is a manifestation of a cancer which is in my system - now in bones, lungs, epicardium (tissue containing the heart), ovary, lymph nodes all over, etc. So it would have done no good. As it is, the mastectomy seems to have been just as bad an idea as the surgeon thought it was-- because it seems to have stimulated a big flare up of the cancer. 5) The best way to handle skin involvement if it is an infiltration from a breast cancer like Inflammatory Breast Cancer seems to be to treat it systemically with chemo therapy. I am still on Halaven, and rooting for Halaven to work, but perhaps something else is to be tried soon. Good luck.
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Hi all, I have skin Mets as well on my left breast where I had original BC DX and had radiation 7 years ago. I also developed Lymphedema on the same side. My skin Mets is oozing and it smells but not painful I think becuase the Lymphedema pain takes over most of the others pain I have. I am on Percocet for pain. But only lasts about 4 hours.
I have been reading because the blistering is getting wide spread and I do have a nurse visiting to clean it but they only use saline and then bandage it after. I feel like they are not doing enough. I read somewhere of silver rope? Is there a particular brand that I should use? Do I need to talk to a dr to get prescription? My breast is starting to look really scary and smelly....I have other bumps on my skin as well which aren’t very itchy but noting short of scary than what’s on my breast. Please help! Than
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please let me know how you for the of your mets
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Minnie I don't have any of the silver rope dressing left to check the brand, but it was given to me by the wound care specialist at the hospital so it was probably a different brand than what you can buy over the counter at any medical supply store. The rope dressing is used when there is a cavity (aka tunneling wound). It absorbs all of the nasty stuff. It's not much fun to use, removing it is horrible.
At various stages of healing we used different products - they also gave me Melgisorb Ag 4x4 dressings which is an antimicrobial dressing with silver to be used when the wound healed enough that there was no longer a cavity. Also Silvasorb gel, which I believe does require a prescription. My MO was skeptical about the Silvasorb, but I kept using it since the wound care specialist prescribed it.
When the mets were at their worse we would clean with saline, apply the rope dressing, use Silvasorb on the rest, and loosely cover with a gauze dressing. After a while I found that it healed better when there was some air flow, so I made sure the dressing was loose.
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Taxol isn't working this time. I have two fast growing tumors in that breast, one is fairly large and extends under my arm. The skin mets sting like a mother but thankfully it hasn't broken through the skin yet. New scan on Monday and then I meet with my MO to discuss what we're going to try next.
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Hi, just wanted to share with you that the experimental unit of my hospital has run gene and DNA tests on a core needle biopsy of my skin mets (carcinoma erysipeloides), to see if they had available drugs working on other types of cancer with the same mutations. This was not the case. The "culprit" seems to be Notch1 mutation, which is associated with chemo resistance and hence recurrence – not only in breast cancer. Presently, there are no available drugs to knock it down. A lot of research is done, on-going for years, though, as far as I can see.
I have now had 4 cycles of Kadcyla (TDM-1) and am still progressing, minimal SEs on the positive side. I think I qualify for the clinical trial HER2Climb, and will sign up next week when I meet with my MO.
Lorica, it is excruciating what you are going through - I really hope that your MO comes up with something that works for you!0 -
Hi ADDK and all, I’ve not been active on this thread before but I follow it since I did have skin mets upon my stage 4 diagnosis. I was fortunate that the skin mets responded to my initial THP course and it hasn’t come back. My struggle has mostly been with bone and muscle mets. I’m currently on Kadcyla but am always thinking about what’s next. I’m curious about the HE2Climb study. Can you tell me anymore about it? I’ve had genetic testing on my most recent biopsy which came from my psoas muscle but I must admit that I don’t know or understand too much about what the results mean. Thanks much. Margi
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Margi, I´m so happy for you that your skin mets were knocked down. We have public health care in Denmark with no alternatives regarding cancer treatment. Within certain frames, each hospital decides which standard treatments are offered; Kadcyla is the last line treatment offered by my hospital, so I can either give up or look for alternatives. When reading these boards I get the impression that in the US you actually have a dialogue with the MOs regarding treatment possibilities, and a certain amount of flexibility. If you have "only" had TCP and Kadcyla, a number of other targeted drugs are still available for HER2-pos. cancer, in addition to combining HP or H alone with various chemo drugs.
HER2Climb is a phase II clinical trial still recruiting participants (US and Western Europe). 1/3 of the participants will have Herceptin+capecitabine+placebo, 2/3 will have Herceptin+Capecitabine+tucatinib – a new drug. The study is randomized and double blind, meaning that the participants are allocated to one of the two groups by chance, and that neither the participants nor the doctors will know which treatment the individual participant has. I read somewhere that the results from the phase I trial were promising (high response rates) - also for skin mets - and that the SEs are acceptable.
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Thanks for your response, ADDK. Yes, in principle we do have a discussion with our MOs and at least some flexibility about treatment options in the US. I suppose our biggest obstacles tend to be whether insurance will cover them and how we pay for our uncovered costs. A combination of our two systems might be ideal! I’m fortunate that I have a proactive MO but I worry sometimes that I rely too much on her and not enough on finding and understanding the options that might be available beyond what she presents - if that makes sense. I have tried and progressed already on just HP and many years ago (nearly 19 now) I had my lifetime maximum quota of AC. Since my stage 4 diagnosis 4 years ago I’ve had Taxol and Abraxane both with HP before Kadcyla and I’m assured that there are still options out there when needed but I’m also trying to be more diligent in bringing ideas to the table so thank you again for the info! Margi0
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Hi everyone, In an effort to keep this thread alive and bursting with info, I'm recording my latest tx for my skin mets. Yes, it's definitely the tumor coming out of my breast. My total tumor load (that we know of is two tumors in breasts, very small lung nodules presumably cancer but too small for a Pet scan to pick up. And 4 spots on my spine (2 compression fractutes)
Early Feb. my Onc. said Ful/I was not working and told me IV chemo (taxol) was preferable. 2nd choice was Zeloda. I was terrified. The Onc is most concerned about the tumor ulcerating===according to her, it would never heal.. I once again asked about surgery, two different ONc's said no. It would spread the cancer and do more harm than good.
So, just today, I did my 4th toxcel. Scans next month. In the meantime, no idea if it's working. Wishing all on this thread very best wishes. It is exactly like you said, seeing it daily is a constant reminder.
Just keep believing Sue
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Sue my ulcerated skin healed completely with Taxol in 2017, so don't loose faith. You do want to try to avoid having it happen at all costs, but it's not always true that it will never heal if it ulcerates, especially for someone who has never done IV chemo before. It's usually a matter of finding the right treatment/chemo drug that works, and that gets harder after you've already been on several different lines of treatment. That said, I noticed improvement almost immediately after starting Taxol that first time. You say you just had your 4th infusion and I'm assuming that's weekly? This time (my 2nd go around with skin mets) we gave it 6 weeks before rescanning to confirm it wasn't working, but it all depends on how fast it's spreading. Mine spreads fast, so I didn't have much time to wait around before trying a different treatment.
I hope the Taxol works well for you.
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Lori Thank you so much for the encouragement. I am on 3 on and 1 off. Scheduled for 9 treatments. (3mos)
When I had my Onc visit last week before my 4th taxol, by physical exam my Nurse Prac. said that the original tumor was definitely shrinking. (this is with her measuring with a dressmakers tapemeasure…..so) Also, walking is easier, no more use of cane, and the pain in my spine is gone. She's taking those facts as positive. The second breast tumor is the one that is growing outside my breast. I've photographing it and it's definitely is still growing. However, my ONC said that the tumor would heal from the "inside out". (I think he meant inside my breast first then the outside tumors) The thing is, the "tumor" that the skin mets are growing from is not a hard tumor. Just a collection of cells. Called "crib" ???something.
This Wednes. will be my 5th infusion after seeing my ONC. So, I'll find out what he thinks. I should have scans in 3 more weeks. My ins. refuses PET-CT, so I'm assuming I'll have the usual Nuclear bone scan and a CT of chest, and pelvic area. In the meantime, I can only assume it's working and pray. I pray for all of you that I've meet on these threads.
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Snooky, is it the Taxol which has helped make walking easier, pain in spine go away, and no more use of cane ? I have those three problems, particularly pain in spine, and walking is almost torture, and it is just getting worse. I am not really fighting it, but i feel if I don't get out and fight just a little against gravity, I will be losing the fight more and more every day. Prayers - I am not religious but in way I have all of you in my heart.
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Hi Amarantha. Yes, I ended up doing 6 mos of taxol. For me, it was an easy chemo. It reduced my bone mets so that's what made walking easier. Plus I was taking Xgena for the bones.
Bad thing I developed mild neuropathy in my left leg. So I had to quit taxol before it got worse. I'm now on Zeloda, too early to tell if it's working,
Yes, you have to move. I ended up forcing myself to walk more while on taxol so my muscles would stay strong. All the best to you
HUGS
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Thanks for answering, Snooky, I'm glad to have support regarding keeping moving. People are so over protective, and want to stop me from getting tired out.
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So no one has been on here for years. I love had a rash come and go on my back and arms and now neck. I have now just realized the neck rash and redness is prob IBC skin mets. I just stopped Ibrance a few Months becuase I started getting pleural effusion and wasn’t working anymore. Now am on xeloda. But judging from this neck thing, don’t think it’s working. So peeved about this IBC. I thought I was only dealing with the effusion but no!!
so who else is out there??0 -
Sitting here waiting for the call from my diagnostic imaging center to schedule a mamogram/biopsy/ultrasound thingy. I don't exactly know what they're planning and the only conclusion I've drawn after a week of worrying is that I need to fire my oncologist and get someone whose communications I can understand. Last time I saw him and asked about my symptoms he said something about a referral for a scan, but he was smiling and he didn't look concerned. I really relied on him to let me know when I'm supposed to worry and when I'm not. The following week I get a call from his assistant asking if I had had the scan yet. I told them no one had called me to schedule it. More runaround and it turns out they don't know anyone local who does the ultrasound biopsy they are asking for, but it is urgent that it happen "this week." Too late for that now.
I think my primary tumor (never removed as I was stage IV de novo) is growing out through my breast. It's incredibly frustrating to me that I, as a breast cancer patient, did not receive regular breast exams during my 7.5 years at the same cancer center. I know I would have had my diagnosis already by now if I had had some help in looking at this skin I'm in. I should have been more proactive. I should have changed doctors sooner.
I'm currently getting Taxol, and it was doing a good job on my lungs, liver and other concerning areas, but there is a sore that doesn't heal and my nipple is being swallowed up by a red patch. I just hate sitting here without a plan or any information, while reading stats that make me sad and scared.
To anyone else who has dealt with this, I hope you're okay and I hope you can come by and chime in with your experience. Thanks for reading.
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