metastatic breast cancer with cutaneous mets.

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161

Hi Ladies

Well another visit to oncologist completed… I’ve only had one cycle of eribulin so far so she says is still to early to tell if working… However my tumour markers have gone down so she says there has been a biological response, and seemed to think my skin mets have improved… She says to go for at least another two cycles to see what happens… I like my oncologist - she even gave me hug ??..

My bloods came back good this week so I had my day 1 of my 2nd cycle this afternoon…

Belinda - I’ve found this chemo quite easy so far - hope not tempting fate!! - hope you find the same… X’d fingers…

Marirose - I’m not brave, just very, very stubborn!! I got home today and have booked to take my boys to Disneyland Paris at Xmas !!! I hope things are going ok with you??

Dbno - hope your ok?? My oncologist gives me the white cell booster jabs for three days prior to my day 8 infusion… And so far this has worked… I’m even managing to keep my hb up by eating loads of watercress, eggs, and good old oxo drinks… (With OJ for absorption)…

Stresshead - im so plsd you have managed to get more biopsies and electrochemo (never heard of that!!)…you must be a really strong person… ???

SS - Im sorry your brother has had to go , but hopefully your friend will take over and is now spoiling you rotten!! I also keep my fingers x’d that you have had it will be having eribulin this week… hope it works wonders for you … And you are right we are all amazing !!

Best wishes to all who read/post on this and other threads!!!

To those who are having a rough time
(((((( Hugs ))))))

Wolfie xxx

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Good evening ladies

 

Wolfie - Have you told your boys about their Christmas treat or is it going to be a surprise. I bet you’ll all have a marvellous time. That’s very promising news about your markers and that your onc thinks there’s an improvement in your mets. I need to ask my onc why I don’t have me the blood cell boosters. I’m just going to get my day 8 of cycle 1 tomorrow as my bloods have been too low since the day 1 dose. It’s not good considering we both started Eribulin it at the same time. I don’t want to end up missing half the treatment like Gem Carbo.

 

Belinda - The blood should have pepped you up a bit and put you in a better position for tomorrow. I’ll be thinking of you while I’m getting my dose. I’ve found it ok so far, other than the migraine but I already had the headache before the treatment. I’m certainlyfinding it very doable compared to Cape. Best of luck, I hope it works well for you.

 

Thinking of all you other ladies too.

X

 

 

 

 

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Dbno

Disney is going to be a total surprise… I’m just going to tell them we are going away and make them guess as the train makes its way!! I may even have a couple of days stopover in Paris for a bit of culture… Eiffel Tower, louve!! I’m soooooo excited??? feel like a child myself!!

I only have the jabs from the Sunday to the Monday - so only 3 not the normal 5 but it seems to work for me…, I have heard tho that if it hits your bloods hard like yours then it shows it’s hitting the invades hard as well!! Believe ?

Hi to everyone else?

Wolfie xx

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Hi everyone

Good luck to all you Eribulinians feel quite envious especially Wolfie getting a reduction with the invaders mine are increasing.

Wofie you are throwing yourself into quite exciting expeditions your boys will be so proud of you as we are.

Bumpkin how did you go on with the trials been thinking about you.

SH how are you getting on with biopsies and did you find out about electrochemotherapy would love to know.

Love to everyone x

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Hi Bumpkin

My ulcers are showing sign’s of healing but are still wet but the skin mets have increased surly the e/e isn’t working. I have dry patches where the patch sticks which are causing me concern I have resorted back to dry dressings with a very thin coating of barrier cream to stop it sticking to the ulcers I thought fresh air is what it needs I am relying on my cotton vests to help keep it in place during the day I have only done it for one day but things seem to be a little better. The nurse said the dressings should create air but I feel better this morning. Also the rash has not gone completely it looks dry then all of a sudden it turns back to red but like small pimples. The nurse has seen it and thinks it’s like the folliculitis that I had even that has faded a little over night. I really don’t know what I would have done without the cotton vests and thats down to you thanks for suggesting them x

Sorry to go on about myself when you are going through with the trials you seem to have a lot of messing about getting to and from the Hospital I hope it will not be too tiring for you. You seem to be a tough cookie lets hope it produces good results and I wish you lots of good wishes during this keep me informed how you are getting along with it all.

Stresshead how are you getting on.

Thinking of you all love to everyone. xxx

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Hello ladies

 

Belinda - I’m interested to read that you’re having steroids with the Eribulin. I’m not having any with it and only had some with the Capecitabine because I couldn’t get out of bed without them. I’m feeling pretty well on the Eribulin but it’s causing me some balance problems.

 

Bumpkin - I hope this week proves less tiring and that the treatment is going well. I have the office Christmas cake soaking in rum, ready to bake it tomorrow morning. Haven’t made the mincemeat yet - may do that later today.

 

Marirose - glad to hear the skin mets appear to be healing, that must be such a relief. My rash still has a blistered apearance but has developed dry, peeling skin on the surface in the last couple of days so I don’t know if that’s a good or bad sign?

 

Wolfie - I hope things are still on track and going well with your Eribulin. Can you see any signs of improvement?

 

Stresshead, SS, Janice and anyone I may have missed - I’m thinking of you all.

X

 

 

 

 

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Hello my dear friends

I don’t know how I would manage without you all it seems difficult to talk to others who don’t have the dreaded invaders. My chest looks a mess the little bubbles have changed to larger blobs all grouped together and I cannot count them any more the rash is still lurking. I have just had a CT scan I thought I read somewhere that skin mets cannot be seen on scans if the rest is still stable then can the e/e still be working??? I am feeling so down not knowing the answer to a lot of questions I write them down but when other  things get into the discussion sometimes I don’t get chance to ask them and I don’t like to appear to be moaning.

Anyway how are you all doing hope are still doing well with your treatments. Bumpkin thinking of you with your tials and Stresshead how are you we have not heard from you in a while.

Love to all xxx

 

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Good morning ladies

I’ve have a busy few days… My eldest’s 11th bday, so loads of present wrapping and excitement in my house… Football match last night and out for a meal with his little friends tonight… ???

I’ve also have my day 8 of eribulin yesterday… Not sure if it’s storing up the se’s but at the moment I’m feeling quite well… My chemo nurse says my tumour markers have gone down from last week from 97 to 91… Not sure if that a good reduction but at least going right way…

Dbno - I can see a difference in mets… I don’t think they have reduced, more ‘dried’ up… I have loads of dry skin and scabs (sorry!!) which are falling of daily… But the leathery feel is still there… and is still quite red, tho the pain has reduced drastically together with the tightness I used to feel… I also have a steroid with eribulin… Tho is just the fluid they put in the saline prior to the infusion I have no tablets… I hope you have had your day 8 infusion?? And that you are coping ok? I got my gsf injections wrong on my last post… I have them on sun, mon and tues… Makes my blood good for both the day 1 and day 8 injections… Have you asked your onc for them??

Belinda - hope your infusion went ahead, and that your se’s are minimal… That the response is good ? I hope the blood has given you more energy?? I have loads of anemia because I have rheumatoid arthritis and its a symptom of that… I have manged to counteract it with oxo drinks, watercress, eggs and loads of Rice Krispies for the last few chemos… Orange juice also helps your body to absorb the iron…

Marirose - you sound like you are having a bad time at the moment, I’m thinking of you and sending you (((cyber hugs)))). … My oncologist did say it’s possible to have partial response, some tumours respond to chemo others don’t… So your e/e could still be working and well, maybe skin mets take longer to respond? My skin mets were never pimples, they went straight to ‘blobs’… With red inflamed skin and a leathery feel… My skin mets show up on ct scans as thickness in the skin… But I do know that loads of skin mets don’t…
I have read Bumpkins post re ct scans and mets and have found it really interesting… Thank you so much for posting that Bumpkin… I hope the se’s from your trial drug are not too bad and that the trail had a good response…

SS - how are you?? Is your friend still giving you tlc? Is the chemo making you feel any better? My oncologist also stated that eribulin is a ’ slow chemo’ and can take 6+ weeks to start having any affect…

Stresshead - how’s things? How did the biopsies go and any news on the electrochemo therapy?

I spoke to my chemo nurse about drugs and drugs companies doing work on new BC drugs and he stated that the really ‘hot’ area of work was for SBC… the reasoning being that primary BC has a ‘shelf’ life ie limited amount of drug usage… Only give 6 cycles of the drug for primary. However with sbc the amount of drug given to a patient could be indefinite therefore an indefinite amount of profit for the drugs company… Patients could take these drugs for years maximising the money they make… In basic terms if they find a drug which works for SBC they can write their own paycheque… So they are putting loads of money into r&d… Not sure if that is a nice thought it not!!

I’m sorry if I missed anyone, and hugs to everyone ??

Wolfie xx

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Hi to all my ‘skinny’ friends. Forgive me bt i cant seem to get a pop up of the previous posts to reply to individually so i apologise now if i miss anyone out.

Well, day of mixed fortunes…just seen my Onc to get reslts of latest biopsies and they have all come back as TNBC. Not the news i really wanted  bt seems i have mtating cancer…some of it is ER+, some ER-. Hormione treatments no good now so like most of you ladies i’m back to relying on chemo. I asked for this appointment as the next time i am due to see my onc was after the CDF removal date for Avastin but he still thinks it would do no good…apparently thats why its being removed…it isnt very effective and therefore not used??

He looked at my mets and thoght there had been an improvement so for now its on with the taxol. I’m just keeping my fingers crossed that it works for longer than the others! I He did say the next thing would be caboplatin. i had read somewhere about everolimus being used with cisplatin for TNBC but he dismissed it. If any of you have heard of it [lease let me know.  I know you ladies are all more knowledgeable about TNBC and its treatment than me so any info you can give me would be great. Also if you know of any trials, i’d be very interested. (Bumpkin, i will try and PM you)

He has aslo written a referral letter regarding electrochemotherapy so i’ll let you know how that goes.

 

Ladywolf…you are amazing! How you keep going with your 2 boys and doing such lovely things is truly inspirational. I really dont know how you do it. I too have loads of awful scabs but at least its better than being red raw sore. i also get that really tight feeling about 3 days after my chemo so hopefully its a good sign.

 

Bumpkin…thanks for the info on different skin mets. I have some thickened areas so i’m going to ask if they showed up on my scan.

Like you and Marierose i seem to have all kinds. The ones on my abdomen and side are red/purple  blotches, while the ones on my chest are rashy, scabby, lumpy…you name it, i seem to have it.

i too take antihistamines but am in the dark as to whether i should ‘moisturise’ the unbroken skin so it doesnt dry and ‘crack’ or ulcerate or just leave everything alone.

 

Marierose…hope you are feeling a little more upbeat. I’m the same as you…i write everything down i want to ask and then when i get ot realise i havent fond out half that i wanted too!

 

SS, Belinda, Janice, DBNO and anyone i’ve missed (apologies)…hope your treatments are all going well.

 

You are all always in my thoghts. XX

 

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Hi everyone

Bumpkin thankyou so much for your information about the skin mets you are making me understand more about the mets I must admit I get confused when I try to google for information. My next step was to allow the air to get to the ulcerated mets by wearing a loose shirt while walking about the house but I must wait for a quiet day. The ointment was on my list for the onc Imiquimod, chloraraphenicol 1% and fluorouracil I can but try. I have got actisorb with silver and charcoal for the smell but after two dressings it made my mets underneath very sore well I think it was that. I shall be more wiser next Wednesday when I get my results and a chat with the onc and nurse. But thanks again Bumpkin for your help it is much appreciate

Also Wolfie and SH thankyou for your input.

Wolfie I think you are someone to be admired your boys are lucky to have a Mom who has the strengh that you have you all sound such a happy little bunch love to hear what you all get up to.

Stresshead I would love to know how you get on with finding out about that electrotherapy and how did you do with those biopsies.

 

Love to all of you and thinking about you all DBNO Belinda SS Jan and any others I have forgot to mention sorry xxx

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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

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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

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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

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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

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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

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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.

 

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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

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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

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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

 

 

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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