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metastatic breast cancer with cutaneous mets.

Member

Re: metastatic breast cancer with cutaneous mets.

Dear Stresshead and all, this is why I love this thread, none of us are too frightened, I hope, of being honest. I am guessing I have one more chemo after this one and I'm not at all convinced this one is working. (My primary is visible which drew me to this thread.) But SpringSummer you are spot on about Cape. I was on Capecitabine for years, one lady, now sadly gone but used to post here all the time was on Capecitabine with regular breaks for many, many more years than me. If it was working when you were taken off it Stresshead it really, really is worth another try. Sorry real chemo brain but if your Onc has refused to try have you asked for a second opinion? 

Marirose that's such good news you have found someone, at last, who is so knowledgeable!

Take care all. Yes as you say Janice it is hard to live with this happening before your eyes. We all manage so well, we really do. Hope all those a little quiet at the moment are ok. X

Member

Re: metastatic breast cancer with cutaneous mets.

If you can't say how you feel on here stress head where can you. Feel a bit down myself,my mets have got worse and have appointment to see onc.on Wednesday. I know this is ridiculous but I almost feel ashamed to show her looks such a mess as if it was my fault.

 

I find the sticky part of any dressing upsets my skin so difficult to know what to do. Up to now I've been able to put a tenna lady in my bra which covers most of it but that means leaving it on at night.  

 

Never thought cancer caused these problems,with it being visible I find its effecting me mentally as well as physically which obviously is not helpful.

 

Maybe we will feel better tomorrow,let's hope so.

 

Take care

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

dear stresshead how worrying for you. do not think you are putting a downer on me we all live with these thoughts all the time sometimes at the back of our brains but often at the front especially when we think treatment is not working. if the taxol is not working and you are running out of options (like me) we need to think of trials. talk to your onc what is available. there are a lot of trials out there do not let him fob you off and if they do not do trials there go somewhere else for a consultation. the other thing that has always bugged me about your treatment is that they took you of cape when it was still working. you can stay on cape indefinately, so if it still working insist the put you back on it and if you are not happy with their respone go and see someone else. 

sorry to be so bossy but that cape thing has always bugged me. 

 

much love even if i sound bossy.............SS

Member

Re: metastatic breast cancer with cutaneous mets.

Hi ladies, feeling a bit down so apologies for putting on you all yet again. I havent said anything to anyone here (though i did mention it to my onc) but i'm convinced my skin mets are spreading.  My abdomen has gone from a few red blotches to one massive one, i have new nodes under both breasts and spread in my left breast. I have been taking photo's regularly but still find it difficlt to monitor. Just started 3rd cycle of taxol and was really hoping this one woild be the one to succeed. On Thursday my onc said those on my back were better but have just had letter in which he says they are all the same but i definitely have more..they are well and truly on my other breast now and are even around my picc line: i had been having alergic reaction tho the dressings/micropore but now it seems it was more mets. I'm absoltely dreading my next visit. I know there are very few options left for me and i'm getting through them every two months.

I havent heard anything about the electrochemotherapy appointment yet and my onc said to give it a few more weeks. When i see the dermatologist who also does a lot of work with skin cancer patients i wil lask her about the  immiquimod an d floraracil creams...i feel now i have nothing left to lose by trying them if only someone wold prescribe them!  I also asked my onc abot my HER2 now being 1+ not negative and did this mean i cold have herceptin/kadcycla and he said anything below 3+ is negative not positive so that door closed striaght away.

Janice...i so agree  with you about not being able to make long term plans and not appreciating your health when you had it...if only we could turn back the clock..

I try to abide by the mantra " i am living with SBC not dying from it" but its getting harder.

 

I'm so sorry for the low mood and burdening you all bt as we say so many times yo are the only people who really understand. Pease dont let me put a downer on your weekend.

Love to you all.x

 

Community Champion

Re: metastatic breast cancer with cutaneous mets.

i everybody

do you remember me telling you about the tissue viability from our hospice who the practice nurse put me forward for she said there was a backlog. well  had a shock when a nurse from the hospice came. it was so good to talk to someone who is so knowledgable about skin mets. she was going to take me off e45 and said she was changing it for one that they have found very good for skin mets and dry skin. she was changing my dressing for another and it would be a dry dressing she would contact the practise nurse to get her to prescribe it for me. she was so good and made me feel so much better if i needed her again i could do a self referal which is good because before it had to be done by a doctor or nurse.

when i find the names of cream and dressing i will let you know.

 

sorry about not being able to use capitals or upper carriage computer seems to have developed a fault so i may have  to use my phone but i can only read replies.

 

thankyou belinda if it hadn't been for you mentioning that we should have dressings prescribed i may not have gone down this route.

i do hope your next doze of elibrulin goes well also dbno wolfie ss and stresshead good luck to you and anyone else on eribulin. 

 

bumpkin you are in my thoughts as jan and any others who i haven't mentioned are also. xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi all. :-)

Stresshead what a great OH, glad it's helping around the house.

So much innovative make do and mend on this thread BUT why aren't these things readily available to us? It's got me thinking, spinal patients, burns patients, there surely must be all kinds of dressings, creams, sprays, soft frames out there?

For any of the Eribulin gang, hope you are all ok, I'm ok till tomorrow, if all goes as usual, that's when my steroids stop. More blood transfusions for Monday. Certainly having to drink more fluid as been on the cusp of a cystitis bout a couple of times but upped fluids both times. Hair now shedding, I did get OH to clipper it last week but now falling mid of cycle 2.

Have a peaceful weekend everyone, X

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Jan thank goodness you have been able to see your onc tomorrow I hope he can give you some kind of support to help you. We tend to leave ourselves in thier hands and expect them to know what is best for us. Surly you should be due for a scan to see what is going on with your mets. Maybe the question of Cadcyla (if spelt right) may be an option now that CDF has allowed funding for it. Let us know what the onc says and I hope it will give you more hope fingers crossed. x

 

Hi Stresshead what a considerate hubby to make you a cage to protect your skin mets I do hope you find some relief. My heart goes out to both you and Bumpkin mine are not that bad although I am petrified that they will spread like yours and Bumpkins. Please let us know what your dermatologist says maybe they could help you to get some relief. Did you find anything out about electrochemotherapy(not sure how it is spelt) I did see an article on google it looked interesting.

 

Well I hope the Eribulin ladies are doing ok love to everyone xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Oh stress head the things we resort to,would be funny if it wasn't so serious. Haven't you seen any improvement on your current treatment?

 

I wasn't suppose to go back to hospital till the new year but I called last week as things are deteriorating and have appointment with onc.next week,was really looking forward to long break. Tamoxifen making me feel nauseous and certainly not working as far as keeping things stable.

 

Your onc.must be sure of getting avastin otherwise why would he/she offer it to you.

 

Wish it would all go away,would be lovely to make long term plans, never appreciated normal life when I had it.

 

Best wishes.

 

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

Just a quick update ladies...following my discussion about Avastin with the oncology doctor..i had left messages for him to call me back when i tried to return his call, i never heard anything. I have seen my Onc today who has now said he will apply for avastin and keep it in abeyance should i relapse on the taxol (i'm not sure its working anyway but he seemed satisfied)...my big problem now is that is is off the CDF as of yesterday and now i may have missed my chance!! i will be so cross if this is the case when i have been asking for weeks. Surely no more mistakes can be made with me??

I have got a referral to a consuktant dermatologist to try and help with my skin problems/scabs/sores etc so i'll keep you posted. Meantime though my husband, bless him, has got some  coated wire coathangers from Sketchleys and made me a 'frame' which rests on my shoulder, goes over my reconstruction and sits on my ribs/abdomen to stop my clothes rubbing on my skin and also allowing it to breathe. I look an absolte sight but it is helping, at least when i'm in the house.

Hope you all have a good weekend. x

Member

Re: metastatic breast cancer with cutaneous mets.

mmmm yes head massage. lovely. i've got another aromatheraphy booked for friday

Community Champion

Re: metastatic breast cancer with cutaneous mets.

SS thankyou x

I said I had aromatherapy when I should have said reflexology it is a good one for the legs. Fancy a head massage bet thats a good one.

Member

Re: metastatic breast cancer with cutaneous mets.

SS, what a lovely thing to say. You are very welcome on our 'skinny' thread...just wish none s had to be here!! xx
Member

Re: metastatic breast cancer with cutaneous mets.

dear marirose ms as well!  cyber hugs and kisses to you. xxx ss 

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi to everyone

Stresshead how lovely to hear from you so glad you enjoyed your holiday even though you have so much going against you. It's not nice having to carry your aching painful and annoying rough sore smelly spotty body around well thats how I feel.

I'd like to thank you for your input into helping me to decide which drug to choose. It has been confusing the two drugs Epirubicin and Eribulin seem so much alike but I am leaning more to Capecitabine it sounds very much like Everolimus and I did 16months on that with 4 stables. Also it seems to reach the skin mets where as I collected more with e/e but that was at the end must have been when it stopped working.

As far as your HER2+ I don't understand what they all mean mine is ER+ and as Wolfie says I should have biopsy done to find out what it is now that Hormone drugs are not working for me it is somethink I must ask the onc next week. Sorry it's all been about me.

Eribulin and Cadcycla are under fire from the CDF also Avastin but I read somewhere that someone knows that the reason Avastin is being withdrawn is because it is not considered to be worth the money. How true that is I don't know. Anyway best of luck with your meeting with your onc.

 

SS best of luck with your new treatment it sounds like the drug to be on at the moment. It's always nice to hear from you especially when you sound alot happier after your spell in hospital. Aromatherapy is great I once had  a treatment from our hospital centre for cancer ladies. I have M.S and have difficulty walking after my session I could walk without my stick and it lasted for a few days. I am going to have more.

 

Love to all my friends on here you are all a great bunch of ladies thanks to Jan for starting it xxx

Member

Re: metastatic breast cancer with cutaneous mets.

OMG just had a home visit from a arometherphy lady from the hospice. it was amazing. really do feel better!  felt my lungs get better as she was massaging me.  really do recommend if you can get it. 

Member

Re: metastatic breast cancer with cutaneous mets.

hi stresshead - no no skin mets lung liver and bone. just seem yo feel at home with you ladies!. also starting on eribulin this week.

Member

Re: metastatic breast cancer with cutaneous mets.

Hello ladies, sorry not posted for a while but finally managed to get a few days away in the lake district. Weather not brilliant but we had a lovely time nevertheless..think we both needed the break. The only thing that marred it was the pain and misery caused by sore and ulcerating mets, which seems to be a hot topic at the moment. Thank you all for sharing your experiences. Even though i only wear loose t shirts/shirts they still rub and make my skin sore. I reosrted to a bra with a foam pad dressing given to me by my district nurse. This only served to make the scabs come off, making trhe bleeding and weeping worse. At firdt i thought the problem was caused by dresings affecting my skin but reading what Bumpkin has posted it seems like its the cancer.This is a concern as my whole breast is covered. I have had it suggested to me by other health professionals that i shold see a dermatologist so i'm going to ask my onc on thursday if he will refer me. I also asked him if i could have avastin with the taxol but he said no. I have however asked again as its coming off the CDF...waiting for a phone call.

Something you wonderful ladies mayalso be able to help with....when my biopsy results showed i was ER/PR - (0/8..my primary was 6/8) it also said that HER was just 1+. I will query this but do you think that means i am now HER2+..concerned that i may be eligible for kadcycla which is also coming off CDF before i see my onc again.

I also plcked up the courage to ask abot my TM's...they were stable around the 30 mark but the Dr didnt really comment as they dont set any stall by them.

 

Bumpkin...your mets sound exactly like mine..my abdomen is covered, one breast which has spread round my side and up my back and now starting to go over to the other breast. So difficult to monitor, even with photo's so cant really say if taxol is working. Sorry to her the trial treatment doesnt seem to be working but its good there is something else lined up. To be honest i havent looked the trial up yet...wamted to ask how often you have to go to london. Please keep us posted.

 

Marierose...i also got a bit confused as to which treatment yo have been offered. If its any use, i had eribulin but it didnt work. My first trteatment for mets was docetaxol and capecitebine. I was ok on cape..my hair came back..i did have plantur palmatum and my nails went black. I lost my taste and was tired but for all that found it do-able...in fact i'm sure my mets woldnt have returned as quickly if my onc had let me stay on it but thats a long story (already on here).

 

SS.. sorry to hear you've been so poorly. Hope you are picking up now. Forgive me but do you have skin mets as well as lung?

 

Janice...i am just about to start my 3rd cycle of weekly taxol. I saw my onc last week and he thinks my mets were responding..as everything else has failed so far i really want to bel;ieve him bt i'm not convinced...i really am trying to be positive!! i havent really had any side effects apart from flu like aches on day 4/5 and a bit of nausea. My hair has thinned but not fallen out yet and my bloods are brilliant....i know these are all good things but i'm terrified it means its not working any more.

 

To everyone else..Janice Belinda Wolfie and anyone else i havent mentioned ..lots of love and cyber hugs. xx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Bumpkin

I found wearing dry dressings and keeping them in place difficult because I couldn't use tape as they would have been on other mets. Your idea with tight cotton vests which helped but one of the nurses suggested a tubifast which is a two way stretch circular bandage. It comes in a long metre strip which I cut to fit it rolls off my right normal breast but it is not uncomfortable as I still wear the vest in place of bras. I found the spots left from the rash have tolerated it quite well they don't flare up and the uncovered mets seem o.k.

I have been awake with limb pain most of the night and I thought of your problem with the irritation on your mets.Maybe your nurse could help you out with something like this. I always have a Atrauman (inpregnated dressing) on the raw area with the dry dressing on top.

I hope your nurse finds a solution for you it's bad enough getting these invaders on top of having cancer inside your body. Best of luck Bumpkin I am thinking of you. xxx

 

Member

Re: metastatic breast cancer with cutaneous mets.

Hello to all fellow E people. Bumpkin my hospital has a pain clinic attached to Oncology, when I needed them they were so patient, tried and tweaked various. I had a very similar cocktail to yours at the time it was for nerve pain from nerves being crushed by bone mets. I found Gabapentin horrendous so was switched to Amitriptyline. Are you having awful nightmares on Oxycontin and Oxynorm? I found these so distressing, I had the same nightmares every night. District nurses are very knowledgeable, I have used them too, I hope you can get some relief, I really do.

Thinking of all here, on or off the chemo bus, take care. XXX

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi all nice to hear from some of you.

 

Bumpkin you seem to be in quite a mess makes me feel guilty for moaning about mine. My new ones are small and creeping up the between both breasts the other new ones are under the orginal mets under my left breast around the area of my chest wall tumour (2nd primary) the worst is the couple on top of the tumour and that does give me aggravation I wonder sometimes if it could be the tumour it feels as though I am wearing an underwired bra when in fact I do not have one on. When the others were oozing or bleeding they felt very sore. One of the nurses who I see said she would refer me to the Tissue Viability Service which are at our local hospice she said that they are used to this kind of thing and know how to treat it I think they are Macmillan. Would your district nurse know of anything like this? I will send you loads of cyber hugs Heart

 

DBNO I thought at first you said you were going onto Eribulin along with Wolfie,Belinda and yourself. I think we are all muddled with Epirubicin my friend had skin mets appear after her treatment finished and that has put me in a position of choosing cape over that if anyone can tell me anything good about Epirubicin I would like to know. Keep battling on with Eribulin Flo you can do it.

 

Cyber hugs to all you Eribuliners Heart

 

SS you must be feeling better being at home now do you have a television set up in your bedroom it would occupy your mind a little more being bed ridden can not be much fun. I hope the fog has not interfered with your brothers flight. Hugs coming your way Heart 

 

Love to you all xxx

Highlighted
Member

Re: metastatic breast cancer with cutaneous mets.

Hi all

sounds like a mix of news for everyone, as always. It is so good to have such an active mets thread which is so supportive. I have completed one trial cycle. My skin mets have spread a great deal so I am hoping to move onto another trial which the oncologist thinks will suit me better. She may want me to do one more cycle. My skin mets cover half of one recon breast, the underarm area and half of my left abdomen. Also now spreading towards clavicle and the other breast. Some ooze and most are sore. It is very difficult to dress them now as I need large dressings, and many of them! not all are dressed, just the oozing ones, and the rest are very uncomfortable when there is any friction against clothing. I can't find a solution and so am calling in the cavalry, my lovely district nurse. I get a great deal of all kinds of pain -stabbing, throbbing,burning, shout out loud pain - do you? I would be keen to discuss pain management. I am on 20mg of slow release Oxycontin, 1200 mg gabapentin and have liquid oxynorm which I use quite a bit as a top up recently. 

Very few side effects on this trial except overwhelming tiredness. 

Off to London tmrw my second sample biopsy in three weeks. 

It is so foggy I wonder if the trains will run. Last week they were late because the rails were slippery. Hmmmm.

Have the best week possible everyone.

bumpkin. X

Member

Re: metastatic breast cancer with cutaneous mets.

brill news marirose. really pleased. by the way i also have a sister here in the uk who will not speak to me since i was diagnosed. we were very close  - i thought - but no. so you are not the only one. brother not here yet but friends popping round to do chores and stuff. have booked a cleaner and waiting to start eribulan  again  on thursday. will cross examine the onc who is very up to date with the latest trials to see if there s anything in the pipline for us ladies and let you know. still in bed but have kindle, laptop, phone and radio so not bored. love to all

Member

Re: metastatic breast cancer with cutaneous mets.

Hello ladies

 

Marirose - that's great news about your skin mets improving, what a relief. I'm on Eribulin (it's that confusing Epirubicin/Eribulin thing again). There's no sign of it working but I haven't been able to keep on track with it because of low bloods. On the positive side, I have very few side effects, unlike poor Belinda. It's amazing how the different treatments affect people so differently.

 

Wolfie - no doubt you're planning all sorts of marvellous activities for your boys for bonfire night and Christmas. I do hope the Eribulin is working for you.

 

SS - good to hear you're out of hospital. I hope you're feeling much better with your breathing. I know how much it zaps your strength after being so incapacitated. You sound in better spirits and I'm sure your friends and brother will be a real tonic.

 

Belinda - you're just a bit behind me on the Eribulin. I'm sorry to hear that the side effects are so bad. It's really my balance and tiredness that are affecting me, apart from about half my hair fell out after the first day 1 but the rest seems to be hanging on - perhaps because I had a long delay before my first day 8. My scalp has become very irritated so I wonder if the rest is working up to falling out. Had day 1, cycle 2 last week.

 

Bumpkin, Stresshead, Janice and anyone else not mentioned - thinking of you all.

 

Hugs to everyone.

X

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Morning everyone

Hope your new treatments are being kind to you. DBNO how is the Epirubicin going I have a friend who started around the same time with this awful disease nearly 3 years ago. She seemed to sail through this treatment last year. 

Wolfie I do hope you are getting along with your treatment and it is still allowing you to get up to wonderful things with your boys.

Bumpkin I do hope your Trials are not too hard on you sending cyber hugs for you.

SS hope your brother spoiling you and you are feeling a little better.

Stresshead have not heard from you for a while hope you are o.k

I wanted to share my good news with you since I started back on dry dressings things look a lot better still got the 2 ulcers but the clump of skin mets one seems to be healing (hope it's not wishful thinking) the one on the tumour is still oozing but not quite as bad the new mets under the old ones seem to be a lot dryer and the soreness has gone. I am still undersided as to which treatment to choose but leaning more to the cape.

Well love to all and sorry if I haven't mentioned you all xxx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi ladies

 

I am watching how you are getting on with Eribulin (can spell and say that better than Epirubicin) it sounds harsh and I am wishing you both lots of luck with it, Cyber hugs for Wolfie and Belinda

 

SS you are so lucky to have a brother like yours what is his name. I have 3 brothers but only one seems concerned for me and a sister who is too full of herself. Sorry you have been in hospital again I hope you are feeling much better now Cyber hugs coming your way.

 

I seem to be getting somewhere with my dressings for skin mets the new dressing seems to be upsetting the other orginal mets and making them bleed and inflamed. So now I have gone back to dry dressings the rash the onc now admits could be cancer related. The nurse from the gp practise is now going to refer me to the Tissue Viability Service at the Hospice. I have joined a local cancer support group which is run by a nurse who had cancer back in 1965 one year before me and she looked at my ulcerated mets and thought it would be good for me to see them. But apparently they have a long backlog so I don't know when I will get to see them.

 

Well it's getting late so I will say bye for now and love to all our skin met friends xxx 

Member

Re: metastatic breast cancer with cutaneous mets.

Hi ladies

SS - I'm sorry you've been in hospital again.. But I'm hoping that this time they have sorted it and you will be so much better when you've recovered from the operation.. Glad that you have such a good bunch of friends round to look after you... Your brother also sounds absolutely lovely... You are an honorary member of the skin mets thread, we love your posts as well!!! Big hugs and sending you positive vibes, hoping your strength returns quickly..

Belinda - sending you hugs... I'm having my third cycle this week, appt on 25/11.. Like you mine will be stopped if not working - we have to believe!!! 🙏🏻

Hi and best wishes to everyone else..

Wolfie xxx
Member

Re: metastatic breast cancer with cutaneous mets.

Hi all, hi SS, sorry you feel so exhausted. I have the start of cycle two of Eribulin next Thursday. Will be thinking of you at your hospital. My hair is falling out as well. I seem to have every side effect that's been mentioned so far, finding it very tough and feeling low. I haven't asked about my markers, too scared, am seeing my Onc on Dec 17th and my chemo will be stopped if it's not working after 3 cycles. Hope it's working well for us both. And anyone else on this one. Have a peaceful weekend all. X

Member

Re: metastatic breast cancer with cutaneous mets.

hello everyone been away for a while in hospital again for 8 days as they decided to do a procedure on my left lung as every two weeks it was filling up with water so i've been in the brompton. just home today and feeling really wobbly no strengh in my legs and feeling exhausted. it was a major opration. so only had 1 day of eribulin 3 weeks ago but already my hair is falling out.  ]

going to start eribulin again next thursday so i'll let you know how it goes. feeling a bit sorry for myself and a bit helpless as cannot do much. luckily do have 5 close friends looking after me very well but next job is to find a cleaner. anyone know one in west london?

 

brother coming over agian in 4 days to mother hen me for a week so looking foward to that.  

 

still only posting here even though this has nothing to do with lungs! i like the cutaneous vibe!

 

much love to all  and will now look through what has been happening to you all whilst i've been in hospital. anyone finding eribulin working for them yet?

 

SS 

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Thankyou everyone for your input towards the two treatments I welcome all your help and comments I must admit being given a choice is difficult but you are helping me to look more closely at both.

 

Belinda sorry to hear you are not sleeping I know what it is like to spend nights awake mine is usually through pain but I have the odd night just wide awake thinking of rubbish and going to the tiolet every hour just because I'm awake makes you wonder where the fluid comes from. Hope you are soon back to your old self.x

 

Kiliy thankyou for your input you are welcome on the skin met thread glad you don't have them. I also have a bone met mine is the sacrem in the spine I am to have a bone scan hopefully to see if there isn't more mets elsewhere because of pain.

 

DBNO I was interested in what you said about the skin mets while on Cape lets hope the Erip can do the same.I am having trouble pronouncing them let alone spelling them.

 

To all my Cyber friends I am thinking of you xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Belinda - to be fair, when you see them written down it's an easy mistake to make because they look very similar. I had to do a double take. Sorry to hear you're struggling to sleep. It's hard enough without that.

Best wishes

X

Member

Re: metastatic breast cancer with cutaneous mets.

Sorry Marirose and all, have hardly slept for days, just saw an E chemo. X

Member

Re: metastatic breast cancer with cutaneous mets.

Hi ladies

 

Marirose - Epirubicin is the E in FEC. It’s the red fluid they infuse via a syrince. I read (after Googling) that Capecitabine tablets enzymatically convert to 5-Fluorouracil in the body (Fluorouracil is the F in FEC). Although I was unable to tolerate Cape, despite only managing to keep down about 6 days of tablets, it did start to reduce my skin mets rash so it was very disappointing not to be able to continue with it. Eribullin, however, is doing nothing for me, but then I've only had one cycle and the doses were 22 days apart because my bloods were rubbish again.

 

In terms of Immiquimod, it's a treatment they give for other skin conditions. My mother had it for a Sun related problem with the skin on her nose. My former onc scoffed at me when I mentioned it but my GP said he often prescribes it. I know we have to beware of Googling but I found an article about the use of Immiquimod on a young woman’s skin mets. Here’s the web address: jco.ascopubs.org/content/32/8/e22.full.pdf   Topical 5-Fluorouracil is also used on skin cancers, and I believe sometimes on BC skin mets. I first saw that mentioned on the Forum.

X

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

Mari

I don't have cutaneous mets (but have bone mets)

I have been on Cape - recently taken off as tumour markers were going up. So I am now on Epirubicin and have had two cycles so far.

Cape - I found this very easy to take (as long as you can swallow eight big tablets a day). Side effects were Plantar Palmar - so feet and hands need a lot of moisturising and care. However, it affected daily life very little and I continued to work as usual.

Epirubicin - I'm not on the full dose but on a slightly lower dose (150 ml rather than 180 ml). Side effects - hair loss (which you don't usually get with Cape) and tiredness in first week of cycle. But I am continuing to work ... out of the house 12 hours per day.

My main problem with any chemo is that I need red blood cell transfusions quite frequently to keep my Hb level up to minimum OK levels.

Hope that helps.

Elaine

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Anna

Belinda was helping me and she has mistaken Eribulin for Epirubicin I have Capecitabine booklet from BCC but the leaflet for Epirubicin is a Cancer Research paper.

Thankyou for your concern

 

 

Moderator

Re: metastatic breast cancer with cutaneous mets.

Hi Belinda

 

Thank you for sharing that link, all information is always helpful.  Breast Cancer Care also have information on Eribulin and Capecitabine.  If you have any specific questions regarding your own diagnoses and/or treatment, please give our Support line a call, 0808 800 6000.

 

Best wishes
Anna
Digital Community Officer

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Thanks Belinda

you must have been posting while I was. I am grateful for any advise you all can give.

Got to dash I am off to Cafe for a drink and trouble with Marie come and join us xxx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Wofie

I was going to ask about biopsy on the ucerated skin met on the tumour but forgot with all the other questions. A friend who I have made through our cancer journey was telling me tonight that she had the Epirubicin and she sailed through it only losing her hair. But I remembered after talking on the phone that she got her skin mets after her treatment. Gives you something to think about.

Anyway I am going to the Cyber Cafe to torment Marie take care Wolfie xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Marirose, sorry your results were not better. I had Cape and it worked well and have just started Eribulin, which is from the Cancer Drug fund list. It's been a very tough one for me but I have to hope it's working as I don't think I have much more left to try.

Link here, 
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individual...

Member

Re: metastatic breast cancer with cutaneous mets.

Marirose

I'm sorry the results weren't better for you.. I have been thinking of you today..

Good luck with your research and let us know how it goes.. Did your oncologist give you any leaflets on the chemos so at least you can make an informed decision..

I spoke to my oncologist and my second opinion at the Christie about Imiquimod cream and nether of them had heard of it.. Obviously not something that is used at lot, but I think us skin met ladies are a rarity!!! I like to think we're special 😃😃 and keep our oncologist on their toes!!!

Have you asked about another biopsy? If hormones no longer working then maybe the cancer has changed (sorry if you already done!)

Big hugs

Wolfie xx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Thankyou for all your good wishes 

But this time it hasn't worked Hormone drugs will not work on me anymore my main tumour has gone from 16mm to 27mm. I have been offered 2 chemo's Epirubicin or Capecitabine I have 2 week to make my mind up. The rash I had she now thinks it could be related to the cancer as it seems to come and go but it's not itching like before.The first skin mets which have ulcerated have shown on the scan and there seems to be alot of activity around the left breast area thats where I had my 1st primary in 1996 and the chest wall my 2nd primary2013. All other mets are stable but to be on the safe side she has decided to let me have a bone scan because of pains in my limbs.

I feel deflated but not down now I must get my head around all the reading of jargon I find difficult to understand Cape doesn't bother me because I know alot of you have been on it and I can read past posts but Epirubiin I have never heard of.

I asked about Imiquimod she has never heard of it so that gives me confidence

Again thanks for your concern love to all xxx.

 

Member

Re: metastatic breast cancer with cutaneous mets.

Good Luck Marirose. XXX
Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Marlirose will be sending lots of positive vibes your way tomorrow.
Take care Marie xxx
Member

Re: metastatic breast cancer with cutaneous mets.

Marirose

I will be thinking of you tomorrow.. And will be 'virtually' holding your hand as you have done for me many times...

Make sure you get answers to all your questions.. And keep on asking until you are satisfied...

I'm keeping everything x'd for u.. 🍀🍀🍀

Wolfie xxxxxxx
Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi everyone 

Well tomorrow is my big day CT results and alot has changed since the last one feel nervous. I hope I get chance to ask the questions I want to ask. 

Thanks again Bumpkin for the infomation on scabs. You are really helpful. x

Love to all xxx

Member

Re: metastatic breast cancer with cutaneous mets.

A short message to Janice re scabs. sorry. am well but so very tired. Normal skin heals when damaged. When a scab comes off normal skin, fresh skin is revealed. Under our skin met scabs are tumours which have pushed through the skin. They will not heal and make fresh skin unless and until treatment can clear them up. So, they will ooze exudate until then. Try not to knock off the scabs if you can help it. The day will come when they are healed by the right treatment. I believe it.

bumpkin x

Member

Re: metastatic breast cancer with cutaneous mets.

Hi ladies, I had weekly Tax last Jan through to late March. I found it tough, being honest about it, BUT most, from reading of other's experience don't find it too bad at all. I had heart problems to add to my mix as at that time I had some chemo induced heart damage. My hb was knocked badly by Tax so had anaemia every now and then which was hard on my heart. My Onc has said my BC held steady on the chemo. Managed a chemo break over summer and have just started Eribulin. I think we have all had the very thoughts you are having right now, well I know I have. Good Luck to us all and please do keep in touch with this little honest thread, which is why I treasure this thread, it's honesty. Love to you all. X

Member

Re: metastatic breast cancer with cutaneous mets.

SItting here knowing I should phone the hospital but I really don't want to. Weekly Tax has been suggested as my next treatment so would be very interested to hear of anyone's experience of this,was hoping for a lengthy break from hospital but I don't think it's to be.

 

I find that when washing the top comes off my scabs revelling a yellowish substance,not good,more of a hole than a lump. Wound's usually heal don't they but ours don't.

 

Take care.

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

Belinda..thanks for that info..i'll keep onto it. Does anyone else get a little fed up of keep searching for info ? sometimes i wonder if its all worth it cos when i take it to the medics they seem to dismiss everything.

 

Janice..i so sympathise with you. I'm very 'scabby' (sorry) but at lest thats better than being really sore all the time. I have just had a biopsy dressing removed and i'm back in agony.

I also completely get the notion of futiity with this thing.....you said yo have gone so many years now...i think if i knew i cold have several more years i would try everything for as long as i could but i really nderstand your feelings.|Agsin i know its easier to preach than practice but please dont give up.

 

I have been on a bit of a 'downer' since finding ot that my biopsies were TN but i know most of you have been there from the start. Frightened myself by looking on line and finding, the prognosis is poor, so many treatments to try for ER+, so few for TN, the more chemo's you have the quicker they fail etc, etc....

 

Withot going back though all the posts, hve any of yo ladies had wekly taxol? if so, did it work and for how long.

 

Sorry i havent done a very good job of cheering anyone p bt i know you all understand.

 

Love and hugs. x

Member

Re: metastatic breast cancer with cutaneous mets.

Not posted for a while,been on holiday to Sorrento, beautiful part of the world,now back to reality.

 

When I finished my last chemo EC, I was given Tamoxifen to try and hold things and an appointment for the new year. I was told to get in touch if things got worse.  The EC appeared to clear the Mets but they were just hiding and have returned.  I am finding I am getting some pain with them as well which is worrying,been dealing with this for so many years now and feel it will finally win.

 

I Know that I should contact the hospital,been putting it off till after my holiday, but must decide what to do now.  The thing with treatment is that as soon as it stops everything returns so anything they throw at me would be indefinite tax was suggested, so fed up with it all.

 

Some of my Mets are scabbed, but when they fall off its still sore underneath, some on my side are just hard lumps. Like others have said all shapes and sizes.

 

Hope you are all getting on well with your treatments and they are having the desired effect.

 

Take care.

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

For SH, hi just had a quick google about any everolimus trials and can only find some old American ones that also used cisplatin and gemcitabine. Have you checked the CRUK site? If I find anything I will add here. X