Thanks Belinda and Wolfie
I am not giving up yet next Monday is when I see the nurse again and they have an inspection from someone that checks up on surgerys I cannot remember the initials I may get asked for my opinions with any luck. I have been out for dinner and have felt so down I cannot let them do this to me. x
What is wrong with these people? You are not moaning at all Marirose. Don't give up yet, is there a dept at the hospital? Do you have a Macmillan nurse? How on earth does your practice nurse manage her elderly patients leg ulcers, bed sores etc? A friend had charcole dressings applied by her district nurse daily when her primary ulcerated. It's a quality of life issue. Hope you get to see someone with a bit more common sense soon. X
Hi just been to the Doctors to get advice about dressing for mets. All seemed a waste of time never seen this Doctor before because she was a women I thought she would understand more. She didn't say much never looked at my details and passed me onto a practise nurse who patched me up the best way she could think of gave me an appointment for next Monday also gave me 3 dressings. I felt neither one knew what they were I had to explain that they were from the breast cancer tumour. Wish I hadn't bothered all she did was what I had done myself before. Feel quite depressed it's as though they don't care. The mets are driving me up the wall continually itching or is it my tumour good job I am at the hospital next week. Do I sound as though I am moaning. x
What a brilliant description, they are certainly invaders. When mine were really bad before rads and chemo they smelt as well,not very pleasant,look more like a red rash at the moment.
It is difficult to know what to put on them,when I went to hospital once they did put a dressing on that stuck to the skin,did more harm than good, kept to my own devices after that.
i have had skin mets, some large and ulcerated and in awkward places such as under the breast like you, and lymph node involvement in many areas for more than a year. I have no organ involvement, and hope that is still the case! I am looked after by the district nurses for all my dressing needs. My BCN and onc deal with treatment only and the GP picks up everything else. Very simple. Like Belinda and others, I advise you to go via that route for some very caring help.
The likelihood of them drying up is minimal unless you have radiotherapy, which I have had twice to different mets, or you leave open to the air, which is obviously difficult as they weep and bleed aside from the embarassing nakedness! Both iodine and honey dressings leave me with very 'gunky' looking skin mets. The best dressings I have used so far are Mepilex XT Safetac dressings. They are helping my mets to dry to the point where I can also just use Zetuvit absorbent dressing pads under a stretchy tight top at night and during the day if I feel confident. And, where possible I do let them get the air in the privacy of my own room. I haven't dried them out totally yet but I am getting there after months of trying.
I have gone through many chemo options, seven, and see my onc for scan results on Wednesday.
Janice, I am very pleased for you and hope the skin mets get under control. I find it very interesting that your chemo worked on your liver but the skin mets came back.
DBNO - keep resting after Cape and wishing you a much kinder treatment that works.
good luck to everyone for the week ahead and enjoy the warmer days.
Hi Belinda I agree we need to ask for help from our GP's to see a nurse to help with dressings for the mets. I am not using anything but cream and I am wearing top simular to a camisol and no bra it has stopped the mets from being sore but they itch so much wish it meant they were getting better but they are not.
SS You sound as though you are really suffering I do hope your BC team can help you. You mentioned in one of your posts you may go on e/e remember it has done nothing for my mets infact they have increased and I have been on it 14 month my mets have been with me 17 month. Please try to not let it get you down easy to say when it's not me I will be thinking of you good luck for the scan.
Jan good news about the scan but sorry you have got the dreaded invaders back it must be so distressing to see them back again my heart goes out to you.
Love to all fellow sufferers xxx
Janice - after such great news about your liver mets it must be really sickening that the skin mets have returned. I do understand your feelings re the indefinite TAC. I haven't had as much treatment as you but my recent experience with Cape has made me really think long and hard about quality of life against longevity. I suppose the best thing would be to give it a go and see how you respond. We tolerate some treatments more than others.
Enjoy your holiday. I hope you can put it all as much to the back as your mind as possible while you're away.
Stresshead - I'm so sorry to hear things are so difficult. Skin mets are such a nightmare. I hope you've had a positive experience seeing your onc following your scan yesterday.
Thinking of you all.
I was at hospital last Wednesday and the oncologist was thrilled with my CT scan results,seems the legions on my liver almost gone. This was until I told her that my skin Mets had returned after last cycle of chemo had finished.
She has put me on Tamoxifen to try and stabilise things for the time being,but that didn't work for me before.
She then suggested TAC chemo in the new year,this would be weekly and indefinitely which I don't think I could do, knowing I only had to have 6 of EC helped me get through it.
Think I am getting to the stage where enough is enough after almost 5 years of various chemos, anyone else ever feel like that?
Well while we can we are going to book a holiday and think about treatment or not later.
Hi ladies..a little more on the itchy, weepy saga....i saw the oncology registrar on Thursday and i told him about the problem (which i had made worse by securing a pad with micropore and even that rippes my skin off, like burns). He advised to leave the area open to breathe......impossible!! Previous to that my psychologist had suggested i contact the breast unit...why didnt i think of that??!! Anyway i went across and they put an iodine dressing on and gave me some cream (eye ointment whch apparently they use a lot)..they also advised to leave open to air as much as possible and not to use pads or padded bras. The Dr there also said something about remaining positive so now i'm thinking that they think it couls be something else!! Also because of the open sores i wasnt allowed to have my chemo which worried me even more, even though i know its not working. My mets seem to be spreading a lot. My other 'breast' has now got an area of rough thickened skin so it looks like it has reached the other side. I have asked for a 'second mastectomy' before but seems its not possible. I have a scan tomorrow which i'm dreading and then back to my onc, who i now havent seen for 10 weeks!!. to get results. I can't see how its spreading over my skin without getting to my organs. Needless to say i'm now terrified they are going to say as nothing has worked so far, its too late. Irrational i know but i'm sure you all understand. Thank you for listening yet again. Love to all.xx
Marirose your GP could help, via a nurse either calling on you or you visiting the surgery. Really cross some of you are having to "make do and mend" when there is such a large selection of dressings out there, on prescription, to make life easier. Take care all. X
Hi everyone hope you are not suffering too much with the irritating skin invaders mine seem to be itching more than usual wish it was getting better but its alot worse from 11 spots I must have loads more now with the rash of very tiny spots.
Jan how did your scan go I do hope it was ok. I thought the tena lady pad was a good idea I cannot wear my bra because the mets now surround my chest wall tumour and the crease under my breast these are now ulcerated. The onc knows about this and she has seen me trying to dress it myself also leaving my bra off but I have never been offered any help with it but then I have never asked for help maybe she thought I was treating it quite well myself. I don't think they will ever go away so I must resign myself to the fact.
Sorry to go on abit but love to you all xxx
Hi all, have secondaries and often read this thread, was just going to advise there are all sorts of tailored dressings that you can get on prescription, I had to use some a couple of years ago and they were very good, didn't adhere to skin etc.. Take care. X
Before I had 5 rads treatment, mine were weeping badly I use to use a tenna lady inside my bra, the sticky part stuck to bra and it really helped. No doubt be back to that the way things are going.
I hate seeing myself it looks such a mess,as if having cancer wasn't bad enough without having it in your face.
Hope you get on all right at your hospital appointment, mines tomorrow for CT results,not looking forward to that. I use to be very positive but not anymore,too many knock backs.
Marierose...great news. I think the e/e combo is next for me as chemo doesnt seem to be working...hope i have as much luck with it.
Downbutnotout.....have you tried Emend antisickness? its not routinely given as i believe it is very expensive. I have to go an hor before my chemo to take it because they wont let you take it home (although after chemo you take 2 tablets home to see you through the next two days). I have it along with metroclopromide as and when necesary. May be worth asking.
My mets dont seem to be any better..in fact they are worse. I am really struggling with a very sore and weeping reconstructed breast specially aroung the aureola area. I have now resorted to breast pads and sudocreme but nothing is helping. The itching is driving me mad. Back at oncology Thursday so going to ask breast nurse for help. Any of you had same problems??
Hope everyone is well and coping as best as possible.x
Hello Jan - I'm really sorry to hear your mets have returned after all those cycles of EC. I hope things are better than expected with your scan results.
Well I finished 6 cycles of ec chemo and just as my last cycle ended my Mets came back,seems its only while on treatment its effective. I had ct scan 2 weeks ago and I am due at hospital next Wednesday for results,don't feel overly optimistic.
Before I started this thread I had not read of anyone having skin Mets, seems I'm not on my own after all.
Hi Barton - thanks for your good wishes. Yes, I have antisickness tablets but I was even sick a day and a half after taking a break from the Cape, which really took me by surprise. I'm just wondering if I'd caught some sort of bug the week before starting the treatment as I already felt a bit sick in the days beforehand. I've been completely wiped out by the tablets again all morning but things are improving now, and two whole days without vomiting... yay!
I hope things are going well for you.
I've been trying to catch up today with what's been happening with everyone. Sounds like we've all been having a mixture of good and bad.
Stresshead - I'm so sorry to hear about your mum. It must be so much more difficult to cope with when you're going through such a lot yourself.
Bumpkin - fingers crossed that the mets will improve soon.
Ladywolf - what a shame the holiday high was short lived! Your son sounds like a lovely, caring lad - clearly gets that from you and not his dad....
Marirose - great news from your onc...phew!
Hello to all the other ladies - I hope things are going as well as can be. I often think about Janice and how she's getting on after setting us up with this thread.
I haven't taken at all well to the Cape. Had to stop taking it after 5 1/2 days and have some steroids. I just couldn't function and have had a number of bouts of really gut wrenching vomiting. My body is now completely devoid of any bile...yuk. Started it again today so felt less well than yesterday. I have managed a 5 minute walk the last 2 days. Not convinced it's worth the side effects so will have to discuss at my next onc meeting.
I got my phone call 8.30 this morning the onc said she had examined both June CT and recent MRI with the radiologist and they did a slice by slice on both scans and I am still stable. She said she would be having a word with the onc I saw on the ward. I have a slip disc and along with the met this would be the cause of my bad leg pain also the MS would still play up what a stressful week I have had and the last 4 nights I have been in pain and not fallen to sleep until 3 or 4 in the morning. So now I am back on the e/e combo which he should not have told me to stop and I continue to be a long timer on e/e
Funny enough my skin mets have been irritating today could that mean the drug is attacking them I would like to think so. Love to you all xxx
Barton, thank you for your kind words.
Marierose....i hope you got your phone call sorted..gutting when that happens isnt it, even though you often dont want to hear what they say. xx
Sorry to hear you are having a rough time C after your holiday and what a considerate boy you have my heart goes out to you all who have young children I consider myself to be fortunate that my son's have grown up with families of their own since my 1st primary.
Stresshead you are not getting much relief from your mets mine tend to itch at times and I cannot bare to wear my bra the mets on my tumour and under my breast are sore so how you go on with skin mets else where I dread to think what it must be like.
I have waited all day for the phone to ring went out at 4.15 sure enough back in at 4.40 and the phone call came at 4.30 and they didn't leave a message on the answer phone I feel sick. I have been feeling bad all day and now to think I've missed an important call from the onc really finnishes me off.
Well wishing you all a good weekend xxx
Stresshead - I have just read your post about your Mum. So sorry to hear you have lost her - it's one of the hardest things to go through (in my opinion - having lost my Mum to cancer (not breast) 14 years ago now). All my sympathy and best wishes go out to you. Hugs, Barton.x
Thank you ladies for all your support.
Bumpkin..my mets are beginning to hurt The rash and small lumps are really itchy...registrar gave me antihistmines which are helping a bit.I have resorted to overing them in sudocrem as well. Some of the skin on the aureola has gone yellow and horrible...the whole reconstruction feels realy tight. The mets on my abdomen and back seem to ache somehow....i just keep worrying that all this is spread to my bones or organs. One minute i think they look a little better, the next i'm in total meltdown.
Ladywolf...oh how i feel for you with your children. My daughter is much older but its stillawful to think yo have ailed them in some way...which of course yu havent. What a fantastic thing for your son to say about you always being there and him not minding this. time....brought tears to my eyes. They are a credit to you.
Cyber hugs to all.x
Hi Flo as promised I said I would let you know how I got on today. My onc wasn't happy with the Dr I saw he said he doesn't know about my file and should not have stopped my treatment. She explained I have a slipped disc that and the met in the spine would cause my leg to hurt and the MS would still play up in the other leg he shouldn't have said it was stable the progression was cancer cells in my spinal column. She wants to compare CT scan from June with MRI and discuss it with radiographer and will concider a bone scan she will ring me tomorrow to let me know. What a complete mess about as if I need this.
Hope your sickness has settled down and your chemo is going ok. x
Bumpkin what a great idea about photos of skin mets mine have been a little different one cluster seem to be dryer and when I think they have shrunk they come back as bad as ever and my rash of tiny mets are still here. I love what your onc said about cirrhosis of the liver I will not feel guilty about drinking now x
C hope you had a lovely holiday it's what you need to forget this disease for awhile; x
SS I am so sorry you have lost your mum and to this horrible disease as if you haven't had enough x
I'm so sorry to hear about your mum , I lost mine to BC 12 years ago so I totally understand how you are feeling , I'm determined for I won't let it get the better of me , it's taken enough! Xx
My heart goes out to you and I hope you are finding some comfort from your happy memories. I lost my mum two years ago to another type of terminal illness. The pain eases, though surfaces unexpectedly, but now I get nothing but happiness from looking at her photos every day. I always tell her I'm on my way unless she has a word with him upstairs. I am sure she will as she always found me too noisy to be around for too long, so she won't be in any hurry to have me there.
Eribulin only worked for two cycles for me. We have to keep trying the next thing though, don't we? I think it is a good idea to ask for biopsies and I will follow your lead. Do you get pain from you mets? Mine throb, ache, burn, all sorts.
be kind to yourself. I hope you find the strength and support you need to get through the next few hardest weeks while things need doing. Keep as healthy as you can.
lighting a virtual candle for your mother.
Hello ladies, seems we are all having a few struggles at the moment. bumpkin, what a great idea about the picture library..no idea how we could do it though..i'm a complete technophobe!!.
I seem to hve a combination of different mets..i have isolated lumps on abdomen (and now back) and lots of tiny spots and red rash on reconstruction. Have had 6 eribulin cycles now but it doent seem to be working.Had a 3rd opinion in london last week and he seems to favour the hormone route although everything i've tried so far has failed...thinking we are looking at going down the everolimus ?? route. I have a scan on 7th september and am going to ask for more biopsies to check my receptor status again. Havent posted on here for a little while as i have been having other troubles...havent said anything before on here as didnt want to burden anyone more than necessary...but on 6th August i lost my mum to this *****disease. She knew she was ill but my dad didnt want her to know with what. Very sad but she did have had a long and lovely life...a blessing we all wish we could have!!
Please keep posting...makes me feel so much better knowing i'm not alone.xx
Thank you Marirose. It is hard for all of us. I wish we could organise a photo library of skin mets as they are so variable. I am sure it would help others. I went for my second planning session today and, I have no idea why, but the radiographers cannot achieve what my onc has asked for. They have made a mould for me to lie in, a special bolus to lay over me and have added to my radiotherapy tattoo collection. I lay still, on my side for 90 mins, going up and down on the table, machines whirring about, but apparently to no avail and so they are going back to the drawing board, with the Physics dept, so they said. Am flummoxed. And so I won't start Monday. It is a 70 mile round trip so perhaps a break for a day should be looked upon as a positive!
i hope you stay stable Marirose. I assume E/E is a hormone positive treatment combo?
Happy weekend. The cava bottle is open here. My onc asssures me it is too late to die of cirrhosis of the liver. Ha ha!
Oh Bumpkin so sorry to hear about your mets they sound so bad my problems at the moment seem so little compared to yours. I wish I could offer help but I am quite naive my mets have not ulcerated and although I seem to have a rash of small mets they are still in the same area. My treatment has stopped working and I am not sure what is install for me next. So again I can offer no advise on that subject I have just finnished with the e/e combo after 15 cycles and 4 stable ct scan results. I do hope someone will be able to help but I have read back threads on this issue maybe there could be some help for you there. But in the mean time look on the bright side we are still here and plan to go on as long as possible good luck for any helpful information and remember we are all ways here xxx
time for a catch up. I hope we are all feeling as well as we can and that sickness is under control DBNO.
I am halfway through third cycle of weekly taxol and avastin. It is not having much effect. Large mets are weeping and ulcerated and smaller mets have appeared on abdomen. I will be having five bursts of radiotherapy on the large mets on my back and below my armpit next week plus chemo Thurs and a pet scan on Tuesday. Results and next plan on 9th Sept. My big concern is onc says Vinorelbine next and last chemo unless we revisit some previously used ones. I have had FEC, Docetaxel, Gem Carbo, Cape, Eribulin before this regime. Nothing seems to work despite being told chemo is effective for TN. Any suggestion welcome as prognosis is very poor. However, spirits and hopes remain high!
happy weekends everyone.
Sorry you are going through it with the sickness I hope it sorts itself out all this suffering we go through just to fight gremlins that want to take us over. Not sure what lympona is but I'm glad its harmless you take care and I will let you know what they decide for me next Wednesday love R xxx
Best of luck to all you other ladies going through treatment xx
Hi Marirose - sorry to hear about the spine met problem and progression. I don't blame you for not staying in hospital. Have you had many other treatments?
That's good news that they're not worried about the skin mets and lump. I have a harmless lypoma in my leg but had a big panic when I first noticed it. Good luck with your onc appointment. Let us know how you get on.
I started Capecitabine this morning but had the dreaded vomiting again so I don't know how much I will have absorbed before that. Fingers crossed for this evening. I've taken the antisickness a bit sooner this time. I just hope the Cape works as well as Gem-Carbo did.
Best wishes to all the other ladies.
Hi Downbutnotout think I could do with changing my name to something like yours. Wednesday saw the onc and ended up in hospital the same day could have been for a few days but I came home and will see onc Wednesday. I asked about my skin mets a small lump on my neck and asked about whether the met on my sacrum could effect my left leg from being able to walk properly. She wasn't too concerned about the lump it was squiggy and could be a cist the new rash and old skin mets she was not worried about but the the spine met she was worried it may be a compression on a nerve so she wanted a M.R.I scan on the spine. Because she wanted results as soon as possible she wanted me to stay in the Cancer hospital in Sheffield and she could arrange it better there rather the local hospitals. I waited to hear from a consultant who told me that I had progression in the spine and I would have to wait until all the oncs got thier heads together for my next plan of action in other words the e/e combo has now stopped working. Because he wasn't sure when the meeting would take place. No way was I going to spend a weekend doing nothing but wait I said my onc wanted to see me Wednesday so he let me have an appointment for then.
Sorry for going on but i thought I would let you know why I hadn't replied last night. Hope you went on a lot better with your Tuesdays appointment lots of love R xxx
Hi Marirose - my mets aren't so bad at present. I'm lucky that they're in a location where they don't rub or catch on anything. I sympathise with your situation. I'm seeing my onc on Tuesday so I'll catch up with how you get on after your Wednesday appointment.
Hi Downbutnotout your skin mets sound awful I started with 11 spots that turned blistery and red the rash is still there it I see the onc on Wednesday so I will be able to tell you more after then. I am finding it difficult to wear a bra I am only small busted so I suppose that is something to be thankful for depending on the shirt I wear I can go without it.
All the best to you and everyone on this thread xx
Hi Marirose - your family holiday sounded wonderful! What a tonic.
I don't know about the lumps you describe. I had two different types of skin mets. One lot, which has come back, is a red rash which has now developed a yellowy, blistered appearance in part. But last year the original skin mets were fast-growing lumps in my skin which were red and the original one was purple. I understand that feeling of being trapped with your thoughts. It's horrid, isn't it.
Hopefully your onc or nurses can put some dressing on the seeping met.
Sending best wishes to all.
Hi everyone I have been away with all my lovely family both sons daughter-in-laws with there 3 children meaning 6 grandchildren one of my little family live in France and we last saw them at Christmas.
Before I left I found to my alarm that I now have what seems to be a rash of small spots all around the skin mets they are not red as you would find with a rash they feel like a lot of tiny mets has anyone else heard of this happening. I have tried to wish it would go away but I feel trapped with my thoughts. I see the onc next Wednesday so maybe she could enlighten me if it's normal. My chest wall tumour is starting to feel very sore and is seeping a brown discharge not alot but it is there.
I hope everyone is doing ok and love to you all xxx
Hi Stresshead - I had radiotherapy as part of my primary treatment - ironically, to prevent a recurrence....... My skin mets are all in the region where I had the radio so I can't have any more there, although my former, unreliable, onc said he could have done some superficial x-ray on them. Sorry to hear yours are itchy/painful. Fortunately mine aren't at the moment but if I don't get some form of treatment soon I think they're going to start ulcerating because one area looks rather like a yellowish blister.
Hi Ladies, hope you have all managed to enjoy the good weather over the weekend and not worry to much about our 'troubles'. Ladywolf...hope you managed to have your chemo and aren't feling too bad with it.
Thank you all for your nfo on treatments. I havre just looked back from the start of this thead and notice that many of you have had radiotherapy. I'm not sure though whethe it was as a treatment for the mets or more as a 'painkiliing' treatment, if that makes any sense. A lot of you mention that it was to dry the mets...does that mean because they were weeping/ulcerated or to make them 'disappear'? Mine arent weepy or anything but the rash one is now quite painful...a burning/stinging/itchy sensation..drives me mad. I havent ben ofered any radiotherapy and just ondered if it might help. Any advice?...thanks once agian for ll your support. x