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metastatic breast cancer with cutaneous mets.

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Dear Stresshead what idiots to pull your dressing off when mine were bad we used saline to ease it off.i assume your urgotol is like my atrauman a mesh covered in vaseline that goes between the ulcer and the dressing. I had 3 different nurses who also were not sure about skin mets.When another retired nurse told me about tissue viability and I needed a referral from a gp. I mentioned it to one of the nurses who said she could refer me to them. The nurse came to my home and knew all about skin mets she was great and sent details of dressing to the gp nurses. I now can self refer if I need them.
Maybe you could try to get them to help you.

I really feel for you because its not only the unsightly mets but the soreness and itching and all round discomfort I am no where in the state you are in. Sending cyber hugs to you. Xxx
Member

Re: metastatic breast cancer with cutaneous mets.

Janice/Marierose...i have just finished my third cycle but have seen no improvement: in fact i think the mets are spreading. My onc was applying for avastin to see if i relapsed so maybe thats next?? aren't many things left to try. i too feel like i'm being eaten alive and find it very distressing to have this constant reminder. Have just been to see my homeopath and she thinks its good that the mets are visible because oncs etc can see exactly whats going on and know if a treatments working ...i see her point but think its little comfort to us when they can see them but cant seem to do anything to help us. Mine too are so extensive now i'm just a red blob on my stomach and an ulcerating mess on my chest. God knows whats going on on my back...so difficult to monitor. Havent heard anything from my trial visit which is also worrying me.

I did ask about a bath Marierose but was told not to get the ulcerations wet. I do have a waist high bath though and try to keep my dressings dry but its not the same...dont feel relaxed at all. I thought my dressings were helping and that my ulcerations were healing but have just been to have dressings changed and each time i go i see someone different, most of whom have never come across this. Very often i'm giving them insturctions. today my urgotol was pulled off and the lesions started bleeding again.....have been dry for days!!

Dont wish to moan but even little things like this set me back. I too am so glad you started this thread Janice...dont know where i'd be withot all you ladies to turn to.

Sorry for the 'downer' and thank you yet again for listening. XX

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Jan
Skin mets are awful I always say I am rotting from the outside as well as the inside mine have increased I used to be able to count them but now there are too many to count.
But we all need to put a brave face on even though they depress us on the inside I'm glad you started this thread because it gives us chance to talk with others who understand.

Stesshead have you tried a clear water bath it is so relaxing. My mets have calmed down since I now soak in the bath. I use dry dressings but also use Cavilon barrier cream. My ulcerated mets have scabbed but although I have had 2 clear dressings the couple on the tumour have spotted but only a little.

Wolfie I do hope you are o.k it was nice to hear from you but sorry you have man trouble. I hope your boys are o.k.

Love to you all including the ladies I haven't mentioned I do think about you all xxx
Member

Re: metastatic breast cancer with cutaneous mets.

How long have you been on taxol stresshead and how are you coping? I was told I would loose my hair hence trying the cold cap. Have felt slightly nausea this morning,hoping not too many side effects with it being weekly.

 

My Mets have got worse over the past few weeks so hoping for improvement now treatment has started. Find it really scarey sometimes looking at myself,its like being eaten alive,never knew cancer could be like this.

 

Lazy day today with the awful weather, wish there was something good on telly, can't believe I am watching its a wonderful life.

 

Best wishes

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

yes you have...I've PM'd you back. Thanks x
Member

Re: metastatic breast cancer with cutaneous mets.

think i've done it 

Member

Re: metastatic breast cancer with cutaneous mets.

i'll try amd pm you.............

Member

Re: metastatic breast cancer with cutaneous mets.

Morning ladies, hope you are all as well as can be.

Wolfie...was great to hear from you..sorry about the man trouble but pleased its not C trouble. Stable is good so enjoy this time. Bet your boys are getting excited. My daughter is 24 the week before christmas and she adores the whole thing.

Marierose..thanks for the info on alleyvyn pads..i too get sore with anything sticky and try to use the non adhesive pads..trouble is surgery ordered wrong ones!! They also started to use cavilon cr Waseam on the good skin (acts as a barrier) and my itching seems to have stopped. I will enquire about aquacel.

Bumpkin...i'm fairly sure we were there together. I havent heard anything about a scan next week so now i'm a bit worried. Are they treating you at UCL on the comPAct trial?  when i looked into it it said sutton which is really a bit too far ....OH says one way or another we'll get there. Sorry to hear you had such an horrendous experience on the train. Was also sorry to hear about the mets on your abdomen...i suppose i have that joy to come.

SS...sorry to hear you are struggling with eriblin se's but its good that things are stable. I dont seem to be on anything for long enough to get side effects...it still worried me that no se's means its not working although they say there is no link. Was very interested to read about the fulvestrant thing...would you consider PM'ing me with any details and the name/hosp of your Onc?

JaNICE...hope you are now less stressed. IWhenever i have a hospital appointment i just wrtite the day off and accept i will be there for the duration..then if things do go to plan (ha ha) its a bonus. Sounds like you are on weekly taxol? i havent lost my hair and havent really had any side effects..bit of achyness and nausea.....dont think its working for me but i'm sure you'll get good results..keep us posted.

If i've missed anyone accept my apologies and hope you all have good weekend. x

 

Member

Re: metastatic breast cancer with cutaneous mets.

SS - that's something positive - stable and some reduction. I know you'll be desperate for a better response but you're heading in the right direction. The ComPAKT trial sounds really promising. It's good to have something else in the pipeline, just n case. That must be really hard and frustrating not being able to leave the house but I'm glad to hear your breathing has eased a bit. Enjoy the visit from your friend and brother. 

 

Jan - sorry to hear you've had a hard week. It sounds pretty exhausting, both physically and mentally. Keeping my fingers crossed that the side effects are minimal and that the treatment works well for you.

 

Good morning to the other ladies. Thinking of you all.

X

Member

Re: metastatic breast cancer with cutaneous mets.

Hello all,

 

Hope you all are as well as you can be.

 

I have had a horrible week, Saturday had to go to hospital for chemo talk, Monday hospital again to have port fitted under my skin, had it done under a local, the injections were so painfully and the procedure took about an hour. Tuesday back at 9am for scan then long wait for what should have been my 1pm appointment with onc, did not get to see him till 3.45 clinic running late again. Then back Wednesday for chemo, couldn't decide whether to use the cold cap or not but I was told that with taxol they have had brilliant results, not pleasant but am giving it a go.

 

My chemo is weekly so hope not too many side effects,so far so good,just hope it works.

 

Well that was my week,looking forward to a quiet few days now.

 

Take care

 

Jan

Member

Re: metastatic breast cancer with cutaneous mets.

hi girls start of second cycle of eribulin yesterday. onc says it is all stable wwith a slight reduction so sort of good news.. still v wobbly on feet and breathing a bit better but still not too good. still cant leave the house! but have friend from luxembourg coming to stay on sat and dah dah lovely brother on tuesday.

 

talked to onc about compact trial and he knows the man leading it and says its a real possibility for me so things in pipiline as well. - thanks bumpkin.

 

stress - my onc told me they found an estogeon variation in my cancer that makes me resistant to a lot of their drugs BUT very suscetible to FULESVANT which will be the next one they do with me. could you be the same? 

 

anyway love to you all xxxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Woflie

Great to hear from you but sorry about the man trouble. They can be jolly hard work, can't they!

 

I know you'd rather be NED but stable is good. No need to apologise for not coming on here for a while. Sometimes we just need to take time out to deal with other issues. I haven't posted as much myself lately. It's hard enough dealing with the cancer without having other worries/hassles. Plus, you have your boys to focus on as well.

 

You just take care of yourself and we're here for you whenever, or for whatever.

 

Hello to the other ladies. Hope this week's treatments are going well.

 

Bumpkin - I hope you've had your new dose and that it proves to be a good one in terms of side effects and overall effectiveness. Thinking of you.

X

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Ladies,

Thanks for your concern.. I'm fine.. Just needed to take some time out.. Had probs at home, not cancer related this time - more to do with men!!!!!

I've been to the oncologist today, says I'm stable so not brilliant but I'll take it..

I have been keeping up with everything in this thread.. Sorry I've not been around to add my support to all those who have gone thru some bad times.. I have been thinking of you all..

I'm now getting back to my normal self, so hopefully will be posting more 😀

Wishing the best to everyone..

Wolfie..
Community Champion

Re: metastatic breast cancer with cutaneous mets.

Morning all
Bumpkin can you ask your district nurse to prescribe your dressings for you. I get mine on prescription from gp nurse including the tubifast circular dressing. I cannot understand why you should pay for them.
Good luck for tomorrow

Wolfie we hope you are o.k we are concerned sending you cyber hugs

Belinda you are a tough lady you seem to tackle treatment so well no matter what is thrown at you. You are an inspiration to us all.
Best wishes to our Elibrium friends.

My second dressing is showing no sign of oozing from both groups of mets especially the one group over my secondary tumour. Makes me feel so much better.

Love to all xxx
Member

Re: metastatic breast cancer with cutaneous mets.

Morning again Bumpkin, there are extra long picky uppys available too if you are tall. Have seen the sock and shoe aids too. I shall have to get one too, OH helps me with my long woolly socks cos of mobility problems. Would a pulley help, they attach to the headboard? Or I think you can get an actual, almost bolster thing. Hope the occupational therapist has some helpful plans. And good luck with CompAKT tomorrow. X

Highlighted
Member

Re: metastatic breast cancer with cutaneous mets.

Hello friends

Stresshead, we must have been there at the same time if you were there in the the morning. We must both wear a rose or carry a copy of the Telegraph or something! I am sure all the tests will go well. They are all so kind on the unit as well, which makes it much easier to trek all the way to London. I had my biopsy yesterday. It was a 3.5 hr journey because, very sadly indeed, someome threw themselves under a train at Ealing Broadway so the train emptied at Slough and we went to Windsor and caught a train which didn't leave out a single station on the way to Waterloo.

I agree with Belinda about protocols for dressings. The cost is also a major issue. My Mepilex ones are £20 each and I change them every other day. That's £300 a month just for those, never mind the absorbent padding and body bandages!

i love the deep baths. Thank you, Marirose.

DBNO thanks for the lymphodema massage tips. I hope to get them printed today as I am at home. Please get strong enough for an Eribulin dose asap.

The occupational therapist is visiting to see if she can provide or advise anything to help me. Bending over hurts and cracks the mets on my abdomen so I am hoping for a picky uppy thingy. Also something to stop me rolling flat on my back and onto my mets in bed at night. Pillows don't seem to cope with that.  Then there's putting on shoes and socks! I really feel like an old lady.

Yes, Woflie please get in touch. Hoping no news is good news.

all being well, I start the CompAKT trial tomorrow. Wishing everyone else good fortune.

bumpkin

x

 

Member

Re: metastatic breast cancer with cutaneous mets.

Good morning all, so good to read both your visits to hospital went well Bumpkin and Stresshead, that is good news. Wolfie another who is hoping you are ok, thinking of you. Have a peaceful day everyone. X

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Stresshead
I am so pleased you are getting more help with your dressings it does help when the people around you understand the problem skin mets can cause.
I was given allevyn life pads at the hospital in the cancer clinic they seemed great so the nurse at the gp's ordered more for me but gave me a silver pads to get rid of the smell. Because I was getting sore I thought it could be the silver maybe I could be allergic to it. But it turned out to be the allevyn pads the sticky stuff was making me really sore so I now I have now been put on aquacel by the tissue viability nurse this pad has the silver in it. The body bandage is called tubifast and is great for holding dry dressing in place.
Hope you are all well love to everyone xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Thank you ladies for for kind wishes. Yesterday went quite well...i was really worried that with open wounds they would just show me the door. They think there are a couple of trials i may be suitable for, not necesarily the one i went for. COMPACT was mentioned. i had bloods and ecg...again got worried when the nurse did one, siad i'll just take it to the Dr then came back and did another one. Back next week for a scan and take it from there so fingers crossed. BUMPKIN...yet again i owe this all to you.....you are a truly wonderful lady.

Was pleased to hear yoi are happier with your dressings. At the monent i have got urgotol silver gauze and allevyn pads. I am also using polyfax cream given by the dermatologist. Think its trial and error bt the body bandages sound good..i'll enqure about them. By the way, the nurse did say yesterday that he  had had another lady in with dressings ...could that have been you?

Belinda..like you i dont think my chemo is doing much. In too keep looking hoping to see a difference only to bre disappointed. I do so hope you're wrong and that you are able to continue on eribulin,

WOLFIE...like DBNO i too have noticed you are very quiet at tne moment. Please post so we know you are ok...much love.x

MARIEROSE...i'm so glad to hear your mets are improving. I was under the impression that once they had ulcerated they would never heal so theres hope yet. My skin is red raw and very sore and itchy but everyone has told me not to bath and get them wet...conflicying info yet again.

Back to Onc on Thrsady to se if i can continue with treatment???

Love to all

x

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hello Bumpkin
I am so glad yesterday went well I was thinking about you. You sound as though you are happier with your dressings now. The body bandages are great for holding them all in place. How did you get on with the ecg yesterday did they stick the pads on you.
When you mentioned you had lymphadema and cording as well I felt for you this decease is cruel.
I hope your biopsy goes ok today it's all happening for you.

Stesshead I hope things are now going better for you now. Again you are going through the mill. My smelly oozing ulcerated mets have stopped oozing and have scabbed over I swear it has been the deep clear water baths that have helped.
Best of luck with your trials

Eribulin's hope you are all ok also everyone else xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Good morning ladies

 

Firstly, to Wolfie - we haven't heard from you for quite a while. How are you getting on with the Eribulin? I do hope all is as well as can be.

 

Bumpkin - great to hear the new dressings are good and that yesterday's tests went well. Good luck with the biopsies today and then roll on Thursday!

 

Sending best wishes to everyone else on our little thread.

X

Member

Re: metastatic breast cancer with cutaneous mets.

Thank you, Belinda

 that is much appreciated. Tests went well yesterday. Biospy today and all being well I start on Thursday. 

I am finding Mepilex transfer very good, covered with large Zetuvit pads and then all held in place with a body bandage. Very pretty. 

Wishing everyone as good a day as possible.

love Bumpkin xx

Member

Re: metastatic breast cancer with cutaneous mets.

Dear Stresshead and Bumpkin, I wanted to wish you both the VERY, VERY best of luck tomorrow. I hope you both get on the trials and you can get some lasting respite from all this. I will never, ever understand why there are no universal dressings or a protocol for dealing with mets. XX

Hope everyone else is having a peaceful weekend. Not much snow here.

How are fellow Eribuliners? I missed chemo last week as low whites but had the end of cycle 2 this Thursday. Not sure it's doing much, my (visible) primary is unchanged, I keep looking at it, under all sorts of different lights, trying to see some change. The Onc puts great store on primary change so we shall see, one more cycle before I get to know whether I can continue with it.

Stay warm everyone, sending all good wishes, courage and love. XXX

 

Member

Re: metastatic breast cancer with cutaneous mets.

hello ladies..hope you are all manmaging to keep warm and relatively pain free this weekend....some chance eh?

Sorry i havent been on here for a while, especially to Bumpkin who seems to have been suffering greatly recenty....i do hope things have improved fpr you. As DBNO says..without you i dont know where i'd be. I so hope this other trial works for you.

Talking of trials, i have heard from UCL about the BAL trial and am going there on Monday. My big problem now though is thsat my scabby awful mets have broken down into vile smelly oozing sores....sorry for the description but i know you understand. Mt onc told me that the scabs meant the mets were healing and to keep them ry and let them breathe. Obviously they wernt healing at all and i'm now told they need to be dressed and covered and kept moist.!!  i keep reading about ukcerating mets and how rare they are but that doesnt seem to be the case for s doe it? i'm jst so frightened that it means the cancer is getting worse and uncntrollable. I have ben given antibiotics and my chemo has been stopped. Cat see me being accepted onto a trial in this state. They are so sore and itchy it drives you mad. Am on antihistamines bt as Bmpkin says they dont help much. Jst have to se what happens on Monday. At least now the dermatoogist has sen me and is giving me an apointment and the tisse viabiity team will be involved so i sppose thats progress.

Sorry to hear Bumpkin that yon are also sffering with lymphoedema and cording...cant offer mch advice on the former bt when i had cording my surgeon told me to use a rollerball deoderant and massage for ten mintes twice a day...had me in tears but it worked. The physio told me to get a pulley which hangs over a door (thnk i got it from e bay) and use it to stretch my arm as far as it would go. This also worked well.

 

Cress...i do so hope yor rash doesnt mean you have to join us. My mets started as a rash but i'm sure you will be fine. Finding out qickly is obviously the most important even if its not what you want to hear. Rest assurred we are all with you.

 

DBNO...so glad to hear eribulin is working for you. ..and you Belinda I reay di think it was going to be the wonder drug for me bt my mets are really stubborn and dont sem to respond to anything.

 

Janice...so agree with you about waiting times. I just write the whole dAY off which does reduce the stress a little. Worst of all is scanxiety...doesnt get better no matter how many times we go through it does it?

Dont worry about the crying though...i did the same yesterday when i was told i couldnt  have my chemo and because of my ulcerating mets was asked if i wanted macmillan to visit me.

 

 

Anyway to all of you, and those i havent mentioned, i send mch love and cyber hugs and hope you enjoy your weekend. xxxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Marirose

Thank you very much for the advice. I now have a full body soak every other day when I change all of my dressings. I don't want to get out. I also air dry. I am trying out Mepilex transfer dressings this week. I wish all of the itchiness would go. I am on anthistimines but they don't get rid of it. I guess I have too many skin mets.

 

This week I go to UCLH on Monday and Tuesday to do pre trial tests and a biopsy. ECGs have become impossible as there is insufficient clear skin to stick pads to, so not sure what they will do about that. Echocardiograms are also a no no so I think I will have to have an echo MRI. Wednesday I see an occupational therapist, Friday a psychologist! I have a very thorough Sue Ryder nurse. The appointment I really want is the physio as I have left arm lymphedema and cording. Meantime I am doing exercises. Anyone else got the same?

it is too cold to do anything so I may have a duvet day. Wishing you all a lovely weekend.

bumpkin

xx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi all

just a quicky I am having to send the computer for repair so will only be able to use phone.

Bumpkin you asked about salt in the bath water I mentioned it to the nurse today and she warned salt can make your skin dry so maybe give it a miss

 

Love to everyone hope your trearments treating you ok xxx.

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Thanks Marie I will look into this x

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Not sure if this is of any help, but Avon do an unperfumed bubble bath. I used this when I had 4 weeks of rads and had to be careful. Lots of bubbles without the perfume or colours etc. Love Marie xxx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Bunkin and others suffering the dreaded invaders.

Micky the nurse from T.V said it was ok to get a bath in clear water and wash soak mets but to be careful about using perfumed bath gel she suggested Simple I used baby E45 bath gel I suppose common sense tells us that. I was under the impression that you could only clean them with saline or cooled boiled water with a little salt in thats what the gp nurse said. Well believe me a nice soak in plenty of water feels sooo good and you feel better about yourself. I even enjoy letting the air get to my ulcerated mets before redressing them. So Bumpkin I would imagin salt would be ok in the water. Miss my bubble baths though.

 

I do hope this helps you xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Thanks to all of you for such kind replies. I am going to build up my strength to start the next trial. I echo everything Marirose says, Janice. I have another load of new dressings to try out thanks to a visit from the tissue viability nurse. 

Marirose, do you put anything in the bath? I did try salt but have never had a deep bath and it does sound appealing. 

DBNO fabulous that you are getting good results with Eribulin. 

Cress, I don't think what you describe sounds like skin mets.

SpringSummer, I have sent you a PM about the trial.

Belinda. I do hope you are right! And yes, Oxynorm does help but my GP has increased my prolonged release oxycodone so that I take less Oxynorm as it effects my ability to function. I now have a daily cocktail of those two plus Gabapentin, paracetamol, ibuprofen and Cetirizine for all of the itchiness. then there is Sertraline as my 'happy pills' and 'diazepam' to help me sleep.  Are you all taking stuff like this? 

Happy Sunday to everyone.

Bumpkin x

 

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi again to everyone sorry I didn't get chance to chat with you all I needed to do a little ironing and get tea cooked it was all prepared just needed warming up a trio of curries.

 

Hello Jan what a mess around at your appointment sounds a little like the hospital I go to. My onc was great told me what was to happen gave me 2 blood sleeves one for that day and one for the day before I see her again and then walked out we waited and waited until a nurse we knew asked why were we there. We explained she said wait in waiting room then a young nurse appeared she was going to take my blood I asked her what was happening about my Denosumab jab she went to enquire another nurse appeared and gave me the injection and told me the pharmacist would be coming to see me about my drugs. I sat waiting until a nurse asked if I wanted Hubby to join me he was busy chatting with receptionist and I found out later someone had given him a slip of paper with my next appointment and he was sorting that out. Needless to say we were the last ones there and everyone was getting ready to go home. There always seems to be a lack of organisation.

Don't expect your cancer team to help with dressings you are better off going to your GP to ask for help I asked a lady doc who rushed me off to the nurses room when I said she was a bit brusk the nurse said that doctor couldn't stand wounds. Anyway the nurses were pretty good and one recommended me to Tissue Viability ask your doctor if they could recommend you you will find them great and they know about skin mets. Best of luck

 

SS it would be great if you could find out about clinical trials for Braca. Best of luck with your tials

 

DBNO lovely to hear from you and I am glad you are coping with the Eribulin

Belinda that goes for you too

 

Cress welcome to our thread but I do hope your rash is not skin mets when mine first appeared they looked like red spots similar to chicken pox I had 11 now I cannot count them somemore came like bubbles but now are a mass of purple blobs. So again I do hope you haven't got them but you are very welcome here.

 

Well I hope I haven't missed anyone out if I have sorry. Love to all xxx

 

 

 

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

Sorry to hear how much you are struggling Bumpkin, as others have said you seem to have a good team around you which must be a comfort.

 

I went to see my onc.on Wednesday, arriving at hospital found notice saying her clinic was running 1 hour 50 min late then discovered she was'nt there so ended up seeing one of her team I have never seen before,there is no continuity.  He was very good however and when he saw my Mets was keen to get treatment started, When he started talking about chemo etc.I just burst into tears, there was a breast care nurse in the room she was lovely,but that made me worse. Think it's been building since everything returned after last chemo.  The nurse said I should have help dealing with my mets, dressings etc.,the thing is I keep being told this but nothing is done. Appointment was 3.30 got home about 7 now waiting to hear about scan before treatment starts.

 

I find hospital appointments so stressful why are waiting  times so long? it's always the same I hate going.

 

Best wishes

 

Jan

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Dear Bumpkin

I knew you must have a lot going on with the trials and your skin mets. I must admit I know very little about trials but I do hope they can do something to help you. The tissue viabilty are great they know what dressings are best suited for your condition you seem to have a good medical team around you now thank goodness. I now enjoy a proper deep bath to soak my muscles and most of all my skin mets as long as I don't use any perfume soaps it beats a shallow bath that doesn't reach too far up.

I do hope you are not in too much pain and discomfort this disease is bad enough without the crawling sore spots around the torso. It is good you have a good husband to help I know I would be lost without mine. You know how much I value your knowledge and  would not have found the help I needed if it wasn't for you. I am sending loads and loads of cyber hugs and love to you and wishing you lots of strengh to help you.

Remember if you don't post we understand we are always with you love Rose xxx 

Member

Re: metastatic breast cancer with cutaneous mets.

Dear Bumpkin, 

 

Sorry to read that you've been in such pain. I would not have messaged you had I been aware that you had taken to your bed. I had been reading some of your posts and you looked like an expert on skin bits - please accept my apologies.

 

Hope your trial does the trick. Olaparib in combo with the AKT inhibitor trial drug sounds like a powerful mix!

 

Best of luck,

 

Julia

Member

Re: metastatic breast cancer with cutaneous mets.

Hello ladies

 

It makes me terribly sad that this awful disease is so hard to control and that the ladies who I class as my friends are having such a hard time. I agree that this is the place you should be able to express exactly how you feel when things are so difficult. Whilst I feel very grateful that my mets are now responding to the Eribulin, I also feel frustrated and useless that I'm unable to do anything to help and sometimes struggle for what to say.

 

Bumpkin - had it not been for your help, advice and support I wouldn't currently be doing so well. You gave me the knowledge I needed to fight for the treatment I should have been having last year. I'm so grateful to you for that and the constant encouragement and friendship you've given me since we started corresponding over a year ago. I hope your team can get the pain under control very soon. It's good that your husband is at home, looking after you, and it may help you if you can put all your efforts into regaining your strength a bit quicker with someone there to make meals and look after the home. I don't know how I would have coped if I hadn't had my family looking after me when I was incapacitated. The new trial really does sound very promising for you.

 

Belinda - I hope the Eribulin side effects are under better control and that it's working positively on your mets.

 

Stresshead and SS - I hope you can both get on the clinical trials.

 

Wolfie - haven't heard much from you lately. I hope your mets are responding to the Eribulin and that you have few side effects. No doubt you're planning and preparing all sorts of wonderful things for your boys for Christmas.

 

Cress - I hope with all my heart that your rashy bits are not skin mets.

 

Marirose - good luck with the Capecitabine. Most posts I've seen about it seem very positive, both in terms of side effects (I had to be the odd one out there) and also effectiveness.

 

Jan - how did you get on with your onc last week? I hope she's been able to give you something to help.

 

Sending my love and best wishes to you all, and anyone I may have missed.

XXX

 

 

Member

Re: metastatic breast cancer with cutaneous mets.

dear bumpkin horrible time for you. the trial sounds good though i have heard good things about the olabrib (?0 drug and targeted theraphy is always good. i am a braca person. could i have details and i'll ask my onc about it? it looks like your team are really working hard on your behalf bumps. chin up darling much love xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Dear Bumpkin, I had wondered about the dreadful pain you were having before your appointment. I hope the Oxynorm is helping some what. If these forums and those who use them only deal with good news the forums are not really much use at all.
I hope you can get some strength back and your Onc is quite right Compakt is the best of trials for you. Thinking of you and wishing you strength and some effective, lasting respite from the pain. With Love, Belinda. X

Member

Re: metastatic breast cancer with cutaneous mets.

dear Belinda and everyone.

please forgive my silence on here. I have been reading and keeping up with threads but it has been a difficult couple of weeks. My skin mets have spread dramatically and so many are ulcerated. The pain has been terrible and I bave not really left my bedroom! i am asleep most of the time because I have to take so much Oxynorm liquid. I have had to go to UCL where I was taken off the trisl and had end of trial CT scan, echocardiogram and biopsy. 

It has been a hard time emotionally. My husband is now staying at home to look after me for a while. UCLH are wonderful and very sympathetic. I have been signed up for the COMPAKT trial and will start in a few weeks. I need to bulld up my strength and get dressings and pain management under control. I have had GP here and district nurses plus tissue viability nurse. Lots is going to change with dressings and meds. Bu

I haven't been writing due to being unwell and also not wanting to give bad news. However, I am clinging on to the fact that my onc keeps saying that she thinks Compakt wiill be good for me. It is Olaparib plus a targeted biological therapy code named AKT. It is an AstraZeneca trial and my onc is on this one too! They are still looking for two or three BRACA positive breast cancer patients if anyone is interested. I am not BRACA positive but they don't want anymore nonBRACA. I can send details to anyone who wants them. It is oral tablet trial and you have to go to London.

wishing everyone well and sending lots of love

Bumpkin x

Member

Re: metastatic breast cancer with cutaneous mets.

A message for Bumpkin, hi I hope you are ok Bumpkin, I'm very mindful we have not heard from you on here since the day before your trip to London. Hope you are just resting, having some quiet time but just to let you know you have been missed here. X

Member

Re: metastatic breast cancer with cutaneous mets.

Hello stresshead,

 

What trial are you considering? There's almost always a 4 week drug free period expected but, sometimes they will start screening process before, so you can start immediately the 4 wks is up.

 

I've been on a trial since July but I'm not sure that it's working. I had a CT today and fasting bloods on Mon, then onc on Tuesday, so I will know more then.

 

I've started visiting this page in recent days, as I've had some rashy bits, so I may be needing your advice soon.

 

Best wishes,

 

Julia 

Member

Re: metastatic breast cancer with cutaneous mets.

Hi ladies, just a quick update....left a letter for my Onc to see yesterday re the trial and he has insturcted his secretary to fax a letter to the trial leader. No saying i'll be accepted bt at least it'll be another avenue exhausted. Thank you Bumpkin for all your help with this. Coiple of things bothering me..to be on the trial you have to be off chemo for 4 weeks.....scary even tho i'm not sure its working anyway.. as Marierose as said..they never go away so sometimes they look better , sometimes worse...eeek!!

Also it says the cancer has to be measurable by scans and bloodtests which mets arent?? Bmpkin.,perhaps you can tell me how you got round this in case it becomes an issue.

Not a nice subject but my scabby mets dont seem to be as itchy and sore...dont know whether this is the chemo, the 'frame' i use to keep clothes off them or natral healing....somehow i dont think its the former cos mot seeing any improvement anywhere else.

One last thing...i told my onc about the irritation and that i had got coconut oil and he recommended aveeno. I then told my chemo nurse and she got it put on prescription for me as its very expensive apparently. May be of help to you.

Anyway, hope you all have as good a weekend as possible. :Love to  all. xx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

Wow SS what a day you have had no wonder you have taken yourself of to bed so I will say Morning have a good day.

 

Belinda thankyou for your advice I have ordered the Udderly and I have already seen the other cream in Boots because I remembered you mentioning it in your past posts on the Capecitabine thread and I value your knowledge on this subject as you have done a long time on this drug. I do hope you can find success on your new chemo.

 

Hi Wolfie how is it going for you I hope this Eribulin is still allowing you plenty of time with your two boys. I am keeping you in my thoughts and sending you cyber hugs.

 

Love to you all xxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi SS. It's frustrating all this blood problem isn't it, especially if you feel the chemo is working, ( I hope you find it is.)
Have a peaceful night. X
Member

Re: metastatic breast cancer with cutaneous mets.

phew what a couple of days. went in for day 8 of second cycle and told could not have it as nuetropenic - ditto. they said they would try again today. went in today at 9am bloods taken - yes can go ahead. then they tested agian to make sure and it was a no, so tested again and it was a yes! so have now had it just back home and exhausted!. but i think it may be working. i think my lungs are better. i'll know more hopefully week after next when i get to see my onc. off to bed   night night everyone xxxxx

Member

Re: metastatic breast cancer with cutaneous mets.

Hi Marirose, the dose is worked out by your weight. If the side effects are severe it does work well for many on a lowered dose. I used the Udderly and Eucerin with 10% Urea. I did get painful heel cracks and found silver plasters really seemed to help them heal faster. Good Luck with the tablets, you probably already know but you should not lose your hair.
Hope everyone is feeling ok. No chemo for me today, neutropenia, read it's very common on Eribulin, hopefully ok next week. Hope Bumpkin and other friends are resting, ok. Have a peaceful weekend all. X
Community Champion

Re: metastatic breast cancer with cutaneous mets.

Hi Ladies

I have started on Capecitabine 1650 twice a day it seems quite low compaired to most that I can see but if that is what onc thinks I need then so be it I think I trust her. I have read past posts on the Capecitabine thread and thank you all for your past inputs you all helped me to choose this one.

Today I had my bonescan the radiologist nurse or lady what do you call them anyway she said they would be a week analysing it before they pass the report to the doctor. But then I wouldn't know until I see the onc in 3 weeks.

 

Sresshead your onc must do something to help you you seem to be dangling on a string. I am glad your skin mets are dry but sorry they are still spreading my onc says it happens with mestatic cancer although some treatments may appear to make them appear less they will come back, that cheered me up , I don't think. But remember we are there with you in spirit so sending cyber hugs.

 

Jan please ask your GP for help with the dressings. I find the dry dressings really are best I have some new dressings waiting for me at our pharmacy I just have not had time to fetch them they have had them 2 days. The sticky stuff on dressings just made my mets worse and sore but they have settled down now and the 2 ulcers are scabing.I have found Bumpkin very helpful in helping me understand more about skin mets.

Bumpkin I do hope you are ok.Thinking of you.

 

Belinda DBNO hope your chemo is not too unkind to you and anyone I have missed on Eribulin.

Anyone I missed SS and others I hope you are getting along ok

 

Love to all xxx                                                         PS. Is it Udderly Smooth I need 

Member

Re: metastatic breast cancer with cutaneous mets.

Hello Bumpkin,

 

I've sent you a PM.

 

Regards,

 

Julia

Member

Re: metastatic breast cancer with cutaneous mets.

i would go for a second opinion if he says no stresshead. 

Member

Re: metastatic breast cancer with cutaneous mets.

Ladies than you so much for your replies and support..you really do keep me going. At the moment mets are dry but spreading. I have been through the list of trials and only really found the one Bumpkin told me abot. the recruitment closing date is before i see my onc again so i'm going to see if i can get an earlier appointment.

janice..i know how you feel about showing your body to anyone even the medical staff..i'm not really sure they even know what they are witnessing or what to do. My OH has never seen them and never really asked to which i'm gald about cos it would break his heart.

About the cape issue...i had it with docetaxol and then on its own for 4 weeks...i was told after my scan that the red lumps were probably scar tissue and the rash/hardness in my reconstrction was probably fibrosis.. there was no sign of cancer. Indeed even my breast srgeon said it didnt warrant doing further tests...if only i had insisted!! i know it wouldnt have made anything better but at least i wouldnt have been given the false info about being in remission. I guess we'll never know if staying on cape would have held it at bay but it seems in previous trial it was sed a lot so i will have another discussion with my onc.

Thank you all again for your unstinting support. xxx

Community Champion

Re: metastatic breast cancer with cutaneous mets.

forgive absence of capitals and upper carriage

 

hi stresshead sorry i got your treatment muddled up with eribulin. my heart goes out to you why don't you try your gp ask about tissue viability service they have to refer you if not try macmillan wound management your gp should be able to point you in the right direction. are your mets broken or bleeding apparently i was told if they bleed alot and i mean alot then you need to phone 999 because you need blood clotting gel. now no-one tells us that do they. apparently they use disposable knickers to help hold dry dressings in place as well as tubifast. its worth asking gp for help you cannot go on like you are you do need some help.

 

i don't know if you know i am in the process of choosing my next chemo epirubicin or capecitabine i have read back posts on the cape site and up to now it is winning as the only infomation i can see of epirubicin is people tried it before cape. i have read in the bcc booklet that docetaxel is given along side capecitabine in some cases. 

 

keep fighting stresshead we love you xxx