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metastatic breast cancer with cutaneous mets.

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Re: metastatic breast cancer with cutaneous mets.

Hello all. A mixed bag of how we are all feeling by the sounds of it. I think the mets drying up is hopefully a god sign, Janice. How do yours look CW17? I am also now on capecitabine, day 6, as the gem carbo had kept me stable more or less but then i developed a few more cancerous lymph nodes, one behind my sternum and two underarm, to go with my right supraclavicle one. Too early to see if cape is working. Am tired,though! And i have some new aches and pains. Do you know what they would chemo you would have next,Janice? Good luck for your scan. I am desperately hoping cape will work because I am so happy to be on an oral chemo now. I had developed a dreadful phobia of IV that had be popping diazepam to get through it. Wishing you a good week, CW and Janice. Nearly a new year. Bumpkin xx
Member

Re: metastatic breast cancer with cutaneous mets.

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

Member

Re: metastatic breast cancer with cutaneous mets.

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

Member

Re: metastatic breast cancer with cutaneous mets.

I was at the hospital yesterday and asked about the cream, unfortunately I forgot the name, anyway she said she hadn't heard of any, (worrying as yours has).  What she did say was that if it was as easy as just applying cream why would she give chemo,which I must admit was my thoughts, I'll take the name of it with me next time.

 

Took my chemo last night and I've changed my anti sickness meds, also got ginger beer, ginger cake and ginger chews so let the battle commence.

 

Hope everyone is as well as they can be.

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

Hi all
I asked my oncologist about imiquimod cream today. He said it can be very good for clearing up skin mets. Me said he wouldn't give it to me because he wants to treat everything holisitically and I have other cancerous chest nodes. I might try again next time to persuade him. Still, worth ask yours, eh?
Member

Re: metastatic breast cancer with cutaneous mets.

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

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Teej
So sorry to hear you are in pain with mets. I have read quite a few of your posts. Do you know what your trial drug is? How many doses have you had? Will they assess you with scans soon to see if it is the right one for you? I have wondered what mets look like when treatment has worked. Presumably we will be left with scar tissue which looks like lumps are still there. I am going to ask my onc about this, creams, and where uk treatment is with parp inhibitors and copper depletion therapy, both of which have shown success with tn breast cancer. We are all different, of course, but your post confirms my concern that little is known about these mets and we need to do our homework. People say don't google but sometimes it is the only way to find things out to raise with onc. I hope your pain becomes more manageable very quickly and that you see the results of this treatment asap.
Bumpkin x
Member

Re: metastatic breast cancer with cutaneous mets.

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
Member

Re: metastatic breast cancer with cutaneous mets.

Thanks for that Lynne...gives me a little hope.xx
Member

Re: metastatic breast cancer with cutaneous mets.

Seems I am not on my own with this problem, like you surgery is not an option, would need too big a skin graph. When I changed over to the chemo I am on now I had a 3 week break and it was Scary, had so many breakouts so much so I went back to the hospital but they insisted I needed the break.  I have only had one cycle of vinorabline, think it has dried up but that's about all.

 

Its wonderful that your Mets are being kept stable Lynn, that's the best we can hope for. I use to be really optimistic even when I was told it couldn't be cured, I thought just maybe. Well that ship has sailed and to control them would be good now.

 

How do you cope with the chemo, any sickness? I am finding that the hardest to handle I have anti sickness pills but they don't do a very good job.  

 

Take care.

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

That is very interesting, thank you, Lynnq. It would be wonderful to keep mets stable, even better to see them heal completely!
The photo thing is useful. I take photographs of mine regularly to compare as it is hard to memorise them and also they change throughout the chemo cycle, sometimes worse, sometimes better.
Please stick with us as well as other threads.
Best wishes
Bumpkin
Member

Re: metastatic breast cancer with cutaneous mets.

Hello ladies. I hesitate a little in joining you because my experience of skin mets is limited, but nevertheless my story is positive so might help.
I was diagnosed with lobular grade 2 in right breast and was sent for RMx and reduction on left breast. For some time before diagnosis I had a lesion under my R breast, about the size of my small finger nail. It used to weep and I kept meaning to mention it to GP when I saw him, but in those days I hardly ever did. To be honest I thought it was just my bra rubbing. I showed it go my GP just before my Mx and he suggested that - in comparison with my BC diagnosis - it was "something or nothing" - (his words) and suggested that the surgeon remove it at the same time as my Mx. Which he did.

When I went for my results two weeks later they told me that this lesion also had breast cancer cells in and that it had spread from the primary in my R breast. Later it was discovered that I also had spread to my bones (upper ribs, spine & pelvis)
As I say, that particular lesion is now gone and the site is healed and hardly noticeable. However on my scar line I have a nodule, which is a little smaller than that one. It looks the same but does not weep. It has been there for over two years and has never altered. I am on Letrozole. My onc says that it could be cancer, but what to do if it is? and since it has not changed he will leave well alone. They took a photo of it at the time and told me to report any changes, but there has not been any....

I have had further surgery in the area, they found cancer in my other breast also and I nagged and nagged for a bilateral. The surgeon was very reluctant because of the skin met. He was worried that others might erupt......the onc however was supportive saying that any eruptions could be dealt with by radiotherapy, this was a little less than two years ago, i had a huge drop in Tumour markers after starting LETROZOLE and he took that into account......I had the op., no further eruptions, and the one I have still sits there with no change.

A drop in the ocean compared to you ladies, but may be of some interest.......
Member

Re: metastatic breast cancer with cutaneous mets.

Flori35 Smiley Wink, Janice and Cw17
We are here, we are together. I hope any other ladies with skin mets will join us. I know we all risk other mets, but so little is talked of skin mets. I had never heard of them, though I understand from reading stuff that there is a 30% risk of getting them as a secondary or regional recurrence. If they take over a lot of skin area, clearly we cannot have them removed as we have a limited amount of skin. So, we need to get them all under control. It is clear that all oncologists differ in their views but they do listen to us, so let's all talk about the creams which may help when we see them next and regroup. Meantime, let's do things we like to do to distract ourselves and enjoy life.
Happy weekend
Bumpkin x
Member

Re: metastatic breast cancer with cutaneous mets.

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

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

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

Member

Re: metastatic breast cancer with cutaneous mets.

Just been reading about that cream on line, sounds wonderful if it works. I might mention it to my onc on Tuesday be interesting to hear what she says. Would'nt it be great if it was that simple no chemo just rub some cream on and that's it.  I expect there will be something similar around one day chemo has been with us for so long its about time it was designated to the history books.

 

We can dream, making the most of feeling good before I have to go and collect my poison next Tuesday.

 

Take care.

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

I am so glad you have no spread. I am going to ask my oncologist about imimiquod cream which has proved beneficial in some cases. I can't find UK comments on it though. Have a great weekend. Let's keep the thread going and hopefully other women with same mets will join us so we can support each other.
Best wishes
bumpkin
Member

Re: metastatic breast cancer with cutaneous mets.

Hi again

 

Think I have too many to remove now, I did have a lymph node removed under my arm after about a year of pestering. I knew there was a problem, had it removed under a local anaesthetic at our local cottage hospital and yes it was cancerous.  Other than that my scans have shown no further spread to any other organs, was a mark on my liver but the powers that be seem to think it is a cyst nothing more sinister, hope they are right.  Seems my cancer is trying to make a break for it through my skin, wish it would hurry up.  Its hard to make a decision to have all that surgery, especially when there's no guarantee that would be an end to it.  I also had LD reconstruction.

 

My first cancer diagnosis was would you believe way back in 1985, I had 20 years before my recurrence, I have never had any intravenous chemo over all these years,

 

Best wishes

 

Jan

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Jan
It is gemcitabine and carboplatin. It is IV chemo. You have both week one, just the gem week two and week three off. It is holding my mets stable but I have only had five cycles so far. It is harsh on bloods though, so the filigrastim injections are essential.
My oncologist says they may consider removing mine. They are all fairly close together. I do worry that surgery may not work. Plus, I was told I would lose my recons and all skin. I had double mastectomy with LD flap recon in March.
Can I ask you, do you have any mets elsewhere? And do you have regular scans ? I will have my second pet ct scan next week. First was in August. It means bones and tissue are scanned in a single scan, so preferable to having two. I am very nervous about spread and my oncologist has said it is inevitable, which upset me greatly. I am hoping to prove him wrong. I have never had any positive lymph nodes, but did have extensive lymphovascular invasion. It is not generally known by women that cancer can spread this way, jus as not many have heard of skin mets.
I hope your new chemo works. Please let me know. I have asked to move on to an oral chemo next time as I have had enough of cannulas. There is no one at our hospital available to put in any lines at the moment, except in an emergency, so the choice to have a line has been taken away.
Best wishes
Bumpkin
Member

Re: metastatic breast cancer with cutaneous mets.

 

Thanks for your reply 2catlady.

 

Bumkin

 

Thought I was on my own here, couldn't find anyone with similar.  I have had them for about  2 years but only really noticeable for a year. I had mastectomy with recon 9 years ago and are not actually on that but to the side and on what was my good side. At first I thought why not just take them away but was told they would just come back.

 

What's that treatment like you are on?, not heard of that, mind its surprising what's in their arsenal,  keep thinking I most be running out of options then along comes another.

 

Back to hospital on Tuesday for next oral cycle, see if they will give me some stronger anti sickness meds.

 

Take care.

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

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
Member

Re: metastatic breast cancer with cutaneous mets.

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
Member

metastatic breast cancer with cutaneous mets.

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.