Just wondered if anyone else has this, its like nodules over my chest area, some break out and weep or even bleed sometimes. With the various chemos namely capitabine, Faslodex, and everolimus and exemestane have kept them under control up to a point, but now changed to vinorelbine as there has been recent progression.
Only have done one cycle and have had a fair bit of nausea hope it works, being able to see it makes it more real.
Having a feel sorry for my self day today.
Best wishes Jan.
Hi,jan,huge hugs and we are all allowed to feel sorry for ourselves xxxxx
I’m sorry I can’t help you with these mets .your new treatment will kick Cs butt.
Hope you feel better on next cycle,remember to tell them you have had nausea and they will be able to give you a stronger anti sickness pill.
Huge hugs coming your way,Helen xxxxxx
Hi Janice
I have skin mets though they are not weeping and are all below my left breast recon. I am triple negative and had a few recurrences. These mets appeared after a double mastectomy and recon in July. How long have you had yours? Mine are fairly stable with gem carbo. I have had five cycles so far. I have a pet ct scan next week to see what is going on. Also have supraclavicle cancerous node and one below a rib. Hoping there is some improvement with no progression elsewhere. There is another lady on here with similar mets to yours. She is a great support to me and I hope will be along to write to you if her chemo side effects permit. We all feel like you are feeling. I hope it passes by doing all the things you do to distract yourself. Keep posting. Skin mets are less common but there are a few of us with them. I know another forum member also posted about them in the summer, so that makes four at least!
Best wishes
bumpkin
Hello ladies, think i need to be added to this ‘club’…i had Gr 3 lobular bc with LVI diagnosed in 2011. I had fec, bi lateral mastectomy, diep reconstruction, radiotherapy then arimidex and aromasin. In Jan 2014 i noticed a small lump between the reconsructed reasts and for 5 months was told it ws a sebaceous cyst. Did not have any treatment for 6 months by which time the skin mets, according to my onc, was ‘in about 3 places’. I was told it was incurable but controllable. Fortunately scanns at the time showed no further spread…i havent had any since. I have had 6 cycles of dotaxol and cpaecitabine and am due to have 4 more cycles of just cape. I asked my onc last week if it was inevitable that this would spread and he said not inevitable but, as it seems to have spread via the bloodstream, it was probable. Not really want you want to hear is it. I am concerned at the moment that after the cape the only way forward seems to be regular monitoring, maybe radiotherapy and femara (why this one will work when the other two AI’s obviously didnt i have no idea). I have also been told that they canot operate because it is in ‘too awkward a place’ and thatit would involve substantial skin grafts. It seems that everything will be reviewed at the end of the chemo. I find living with the uncertainty very difficult and while i wish this on no one its comforting to know there are others who really understand what its like… I am interested to know anything about the cream mentioned in these posts and also the types of treatment you are expecting after the chemo. Love to all xx
Hello Jan and other ladies
We all have times when we feel sorry for ourselves, and why shouldn’t we with all we have to go through.
I also have skin mets and I know what you mean about it being more real when you can see it growing. Bumpkin and I are in a very similar situation and I don’t know where I would have been now without her help and support.Like Bumpkin, I’m TN. I had all my axillary lymph nodes removed at my primary diagnosis in 2011 but the recurrence this year was in the area where I had extra nodal extension of one node that was missed at the WLE and only found in the breast tail a month later, during the MX. I also had LVI.
When things were not going well on the oncology side of things with this recurrence, I sought a second opinion and I was put on Gem Carbo, like Bumpkin. I’ve just had 2 cycles but I can see that it’s working. Once it got into my skin I was told it’s incurable and they stopped operating because they said that was spreading the cancer. I also have a subpectoral node which showed up as being cancerous on a PET scan. I can feel it and had it checked by US in March but it either didn’t show up then or I pointed to the wrong area.
I hadn’t heard of Imimiquod cream but will look it up next, but I’ve also seen Fluorouracil cream mentioned on this Forum (I Googled it and it’s used for various skin conditions, including skin cancer), with regard to skin mets but I was also told it’s possible to give superficial x-ray/radiotherapy which just goes a few millimetres below the skin surface. My problem was that the skin mets were spreading so quickly, in different places and with different morphologies, that it wasn’t possible to treat that way. I prefer the systemic treatment (as awful as it is) because I’d rather try to kill off any microscopic seedlings that may be elsewhere before they have chance to grow.
Chemo has a habit of causing me nausea and vomiting and the main thing that has helped me above others is Cyclizine. I have had it as an injection to stop the vomiting and I now have it in tablet form - just need to make sure I start taking it soon enough.
Jan, I hope you soon find something to control the nodules.
Best wishes to all.
Flo
X
I have skin mets on neck, chest and breast like yours Janice, sore blistery nodules. I’m on a trial drug (immunotherapy) which has made it really flare up, although doc says this is my immune system reacting and hopefully dealing with it. It’s very painful ATM. Haven’t had any helpful advice from one, gp even hospice docs on how to soothe it. Hopefully your new chemo will help.x
Hi ladies
Teej - sorry you’re in a lot of pain. I was until I started chemo. How long have you been having the immunotherapy? When I first started the chemo the area of skin mets which shows as a rash flared up the first evening, which I felt was a sign the chemo was attacking the cancer cells. After a couple of days I could see the rash was reducing, so I hope the flare up is the trial drug killing the cancer for you and that the pain will soon reduce.
As Bumpkin says, I think sometimes using the Internet is necessary. We need to be armed with information and keep fighting to get the best treatments available.
Lynnq - that’s great news that you haven’t had any more eruptions of the skin mets and reassuring that they can be stopped.
It’s good to have a specific thread to share info.
Take care all.
Flo
X
Hi to all my ‘skn mets’ friends…
seems to have been little activity on here…have you all ben posting on the bone mets site?
Does make more sense for everyone to use the same thread even htough, if you ‘miss’ a few days, it takes ages to catch up!!
Just to let you know where i am , so to speak, I have finished my dotaxetol/capecitabine combination and have just started my second cycle of cape only. Side effects not as severe re; taste changes, nausea but am still constantly worn out, breathless and my toes and fingers are really suffering. Have also had a cough for ages but keep being told my chest is clear. Have managed to get through christmas |(which i was dreading…so emotional for us) but am not loking forward to New Year…very hard to see others celebrating and looking forward when we know what we’re facing. Seeing Onc end Jan: he still says i cant have any more than 10 cycles of cape but will review other treatments after scans. Will keep you posted. Please let me know how you’re all getting on. Much love to all. x
Hope everyone had a good Christmas, I wasn’t particularly looking forward to it,had to take my chemo on Tuesday so knew I wouldn’t be feeling wonderful. Have had 3 cycles now and I have big doubts as to whether its working, skin Mets look worse to me,have dried up but that’s all. Having scan on Wednesday so hopefully will have results a week on Tuesday at clinic,won’t hold my breath what with bank holidays, always delays everthing.
Still finding nausea a big problem,a part of me hopes its not working,don’t think I could cope indefinitely with this,not and have a life anyway.
That’s my whinging over, should feel better for a few days next week,week off.
Best wishes to all.
Jan
Happy new year all, its hard to say when we just have more of the same to look forward to.
I had my scan on Wednesday so I am hoping that the results will be available in clinic next Tuesday, don’t feel overly optimistic but can only hope. It is very rare I see my oncologist usually her registrar, who I am sure can’t make decision’s so I hope to see her this time with having scan results. I don’t like looking at myself either, when I do I hope it will look better but it never does.
I am just fed up with feeling ill most of the time, this weekend is my best so friends round tonight and out for lunch on Sunday, that will be about it for another 3 weeks.
Best wishes.
Jan
Since I started this chemo navelbine my skin Mets have looked so much worse,really red and angry,thats why I am thinking its not working,surely if it was it would look better,I think I have more of them as well. I mention this to my oncologist but she seems unconcerned,well I am. My hospital is so busy I don’t see how they have the time for each patient that is needed,its like being on a conveyor belt.
Best wishes
Jan
Hello cw17 - the other cream I’ve heard of for skin cancer is fluorouracil (Efudex) (Fluorouracil being the ‘F’ in FEC).
X
Hello to all lovely ‘skin’ ladies…not many posts on here lately…just checking you are all ok. I am suffering the dreaded ‘trots’ SE of cape at the moment so not venturing very far!!! Wherever you are, keep warm during this cold snap and stay well. Love to all.x
Hello ladies - snowy up north today and the wind is perishingly cold. I’m keeping the stove stocked up. Bumpkin and cw17, sorry to hear the effects of Cape. Bumpkin I’ll pm you about your onc meeting.
Take care all.
X
I was always very much against anti depressants,sleeping pills etc,but quite honestly I ll take anything that will get me through all this anxiety now. Just started anti depressants hope they help.
Part of my skin that was particular bad has just died,the wound there will not heal and its weeping, I just keep putting a cotton wool pad over it inside my bra,been like it for about a week.
I am back at hospital Feb 17th for next treatment but may see radiotherapist before then.
Take care all.
Jan
Hi ladies…not a new addition to our thread (thank goodness) have just changed my name.
As i mentioned in an earlier thread i asked the onc dr at my recent apointment about the two cams that have been mentioned…he said they are for skin cancers and not breast cancer in the skin so are of no use to us. Did sound bit odd as one of you mentioned that the one beginning with F (sorry chemo brain means i cangt remember the names) is what is used in FEc chemo which i had when first diagnosed. Spose we have to believe what gthey say but might be nice if you could ask and se waht the answer is. Hope you are all feeling better than you were in your last posts. i am waiting for a scan appointment and have just had the date for my results…so scared. Love to all.xx
Bumpkin thanks for the advice about seeing practice nurse - mine gave me a pile of different dressings, including the seaweed (alginate?) To stuff in the ulcers. Much more comfortable now. I also had an appointment with a nurse at local hospice re pain relief, he was brilliant, the first time in three months I think someone really understood how bad it is. He even phoned my gp while I was there so I could pick up prescription on my way home. I take pregablin twice a day, Amytriptaline once (evening), ibuprofen & paracetamol during the day topped with codeine as needed.
But Capecitabine/Avastin seems to be working as swollen lymphs in my neck have reduced significantly and smaller skin Mets have dried up and scabs dropped off! I’m thrilled - just started second cycle last Thurs and a lot less pain, just hope it continues!
Tracey x
Good afternoon ladies
I think we’re all entitled to feel sorry for ourselves occasionally. Other people complain about minor issues and ailments and I think to myself, if only that was all I had to worry about!
Stresshead - as Bumpkin says, skin mets can present themselves in many different forms. I’ve had a number of visible lumps in my axilla which were about 1 cm each - one that looked purple below the skin and others red on the skin surface; and a rash which spread quickly and then formed into lots of small lumps in a matter of a couple of weeks. I have a subpectoral lump which isn’t visible but showed up on a PET scan. Before starting this chemo regime (Gem Carbo) the pain was increasing daily - sometimes a stabbing pain, other times an intense, long lasting pain, which eventually was constant both day and night. I’m currently responding really well to the chemo and the pain has mostly subsided.
I hope treatments and dressings etc improve life for you all.
Best wishes.
X
ttHi Ladies, av posted on th bone mets thread cos thats where everyone seems to habng out but wanted to keep this thread going as it seems the only one specific to our problem.
I just wondered if anyone could help with my latest problem…
I have been off cpae for 2 weks and on letrozole. For the last two days i have had errible chest pains…felt like i was having a heart attack. Pain on breathing in and moving. Have been to GP today and she has done blood test for pulmonary embolism which apparently we are more suscepible to. Am having a chest x ray this afternoon. Something else to be terrified about!! has anyone else had any similar experience?
My x ray showed inflammation, just an infection so hopefully antibiotics will shift it soon…God, always something to worry about isn’t there?