Skin mets

Hi all

I’m sure there are previous posts on skin mets but can’t find through search.

I now have skin mets along my original lumpectomy scar running up to my lymphnode clearance scar under arm - about 12 in total. I also have bone mets and regional recurrances under my arm which have been previously treated and surgically removed after chemo but are back. Saw onc yesterday, having problems there as different onc every time saying different things. I have now been referred back to BC consultant.

Has anyone else had this experience and what treatment was advised with what success. I am triple negative. Would appreciate any advice.

Thanks Anne x x

Hi Anne,Sorry to hear about your recent diagnosis.If you put (janera skin mets) in the search thingy it brings three threads up, the bottom one may help.

Best wishes Mel xx

Anne I am really sorry to read that you are having more problems :(. One thought occurs to me, and may be a good one to throw at the consultant when you see him. Have they tested the make up of the more recent occurences to see if it is still tripneg. It may be worth asking if it could be IBC.
Dawn
xx

Anne - so sorry to hear this latest development… as Dawn has mentioned skin mets are very common with IBC and it may well be worth mentioning to your team if they have tested for this… On the IBC sub forum we have had a couple of ladies who have been diagnosed with IBC after initial diagnosis… Jackie is our expert on skin mets but she is not being able to get on here at the moment I know with her she was able to keep her skin mets very stable for a number of years but that was partly as she is able to have herceptin… It might well be worth trying to get a referral to the Marsden as I know that is where Jackie goes and she is very pleased with the specialist she sees there…

Theresa x

Hi girls

Thanks for your replies – found the thread Mel which was helpful.

Hi Dawn and Theresa – just seems like one thing after another at the mo. I’m in Inverness so will be referred to my BC surgeon – will phone BC nurse to make sure I see him! I will also take your advice and ask to see specific onc – there is one I have met a few times at the start of the year and felt I could connect with. Think I have to be strong and start saying what I need so am going to compost a letter of request. Great idea about asking for tumours to be double checked as didn’t know they could change and about IBC – will also check out that thread. I don’t know if I could get a private referral to the Marsden being I live in Scotland but would really like a second opinion about my whole care. Is that a possibility?

Thanks again for your replies, it so helps not going through this alone.

Hope you all have a pain free week.

Lots of love Anne x x

Anne - i know that sharonj has recently been going down to the Marsden… she lives near Glasgow and has IBC…

Theresa x

Thanks Theresa that’s very interesting will pm her.

Hi Anne

I’ve got skin mets (along with bone and lung), mine too are along the mastectomy scar. I am being treated with Capcetabine/Lapatinib at the moment. I have only had 2 cycles and can’t yet see any difference in them.

I have tried the janera skin mets search but just comes up with no matches found - have you had any joy with that? I know Jane was something of an expert in regional reoccurences.

Linda
x

Hi everyone,

I’ve just been diagnosed this afternoon with bone mets after having a local recurrence on my mx scar. I’ll have an MRI next week to see how involved my spine is. I’ve been recommended capecitabine and lapatinib and I’ve been reading through some threads to see what’s in store for me. Comments have ranged from the very good to the very bad so I guess like all the treatment I’ve had before I’ll just have to ‘suck it and see’.

Please let me know how you get on Linda.
xxx

Hi Annie81, Sorry to hear that you have been diagnosed with bone mets. I have had bone mets myself for 11 years. I am off on holiday at the weekend so if you have any questions meantime please just ask. I have talked about my treatment on many of the threads if you want to look at them.
Hi (Bydand) Anne, I am sorry to hear about your recent problem. Are you seeing the Consultant in Inverness? You could always asked to be referrred to the Western General here in Edinburgh which as you know has a very specialised unit. If I can be of any help please just ask. I know you said on another thread that you were coming down to Edinburgh on Friday. Unfortunately I am going to a funeral that day. I hope you get some answers and help soon. Take care, love Val

Hi Linda, here’s the link to all Jane’s postings…if it helps.
breastcancercare.org.uk/forum/search.php?keywords=&terms=all&author=JaneRA&sc=1&sf=all&sr=posts&sd=d&st=0&ch=300&t=0&submit=Search
Hi Annie, I’m so sorry to read of your diagnosis. I’m not on lapatinib but have been on Capecitabine for just over 2 years now and have remained very well with no detectable cancer activity. I will stay on the chemo for as long as it’s effective. I was diagnosed with both breast and bone mets seven years ago. There’s much support here. Good Luck with your treatment.x

Hi Belinda, I know you have been on Capecitabine for a long time. As you know I ahve been on it too but not all the time. The first time I had palmer planter syndrome ( sore hands and feet) so had to have the dose reduced. I believe they decide the dose to give depending on your weight. Because you are on it permanently are you on a reduced dose? I ask because each time I come off my tumour markers slowely increase again. I am feeling well at the moment and my Consultant Oncologist does not need to see me for 3 months and the markers are rising but not too bad. I just wondered if you were on a smaller dose? can you help? Love Val

Hi Val, I’m on a high dose, I take 2 lots of 2,000 mgs a day…so 8 of the large tablets a day, 2 weeks on, 1 week off. I do use Udderly Smooth cream…have you tried it? If not I can send you a link where you can buy online. I do know others who have still found the chemo very effective on a really low dose. I hope you can give it another try and somehow manage the sore hands and feet problems. I’ve found Crocs sandals helpful when my feet are a bit of a problem. I think Crocs look awful…but sometimes needs must. I think I’ve been very lucky, so far, not to have really had any feet, hand problems.
I always look out for your’s and Dawn’s posts as it’s great, for me, to know of others who have been living longer than me with their bone mets. Belinda…x

Hi Belinda I have been on the chemo on 2 occasions. the first time for 6 months when my feet were bad and they reduced the dose half way through. I had 18 months without any chemo before I had to re-start it as I was not feeling well and the markers had soared again. So the second time I was on the reduced dose from the start for 8 months. I have been told that this chemo works for me and I will probably go back on it again. At my worst the tumour markers were in the tens of thousands but the very first time I took Capecitabine the tumour markers halved! So it has certainly worked for me on each occasion. I have been allowed to have a chemo-free summer this year but I know the time will come when I need to go back on it again. Thank you so much for your help.
I have tried all the tricks with the feet and the second time it wasn’t too bad. The first time it was like walking on glass and I had to hold back the tears! I too look out for your posts, and Dawn’s and a few other ladies too. I have NEVER felt as good as I do now and that is something to be grateful for. Keep well. Love Val X

Hi again Val, like walking on glass sounds SO painful. I hope next time is easier. But it’s great to hear you are feeling so well right now.
PS this summer I have foxgloves like your’s everywhere…they look so beautiful right now and are right outside a window…I only had a couple last year but now have about ten and they have even hopped over the wall into my neighbour’s garden. They are actually growing in between some stone cobbles.
x

Hi Belinda, Well this year I have some pure white ones too. Once the main flower is over, cut it off and you should get some smaller flowers coming along from the base/sides the same year. What I love about them is that they keep coming up every year. But I haven’t had one as big as the one in the photo yet. I just love all the old fashioned flowers and the plants that smell good at night. The mock orange is fantastic just now.
To everyone else sorry for posting these un -BC matters on your important thread. Think we should PM about our gardening tips Belinda. But it has been good talking to you. Bye for now. Love Val

Yes you are quite right Val…I’m sorry for going completely off topic everyone…it’s late and I should be asleep. x

Anne, I’m sorry to hear about your recurrence / skin mets. I too am triple negative; dx December '07, I had 4 x AC, 4 X Taxotere, lumpectomy, no clear margins so mastectomy, followed by 25 rads. Just six weeks after I’d finished the rads a red blotch appeared just outside the radiotherapy field, where my cleavage used to be.This developed into skin mets. I started on Capcitabine tablets and after 3 cycles the mets had disappeared. The Capcitabine worked well for about 8 months but then the mets flared up again. Last november I had DIEP flap surgery to remove the skin mets - it was not a breast reconstruction but a large flap of skin to rebuild my chest wall.Thankfully clear margins were achieved and once I’d recoverd from the surgery I had 6 cycles of Gemcitabine and Carboplatin. My onc says that they’ve had some good results with GemCarbo combination for triple negs. I am now 2 months post chemo and am currently NED.
In my experience skin mets are really frightening but at least you can actually see if they are responding to treatment.
Best wishes to you, Anne and all the other ladies with recurrences.
Liza x

Hi All

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Best wishes

Poppy

Hi Lisa

Thank you so much for the benefit of your experience. I am being referred back to BC consultant and will discuss all these possibilities with him – it’s such a great help to be forearmed with info. The GemCarbo options hasn’t been discussed with me for skin mets so want to discuss that with them, as you say it is quite scary when you can actually see the skin mets but at least I will know quickly if they are responding. I don’t mind the idea of futher surgery – anything to keep the little b…… at bay.

It is so good to hear you are NED I’m delighted for you and it gives me hope.

Girls – loved your chat about the garden – I too am a foxglove fan, I just love cottage garden plants that reseed where you least expect them. My garden is my sanity.

Thank you and lots of love to you all Anne x x