Belinda - to be fair, when you see them written down it’s an easy mistake to make because they look very similar. I had to do a double take. Sorry to hear you’re struggling to sleep. It’s hard enough without that.
Best wishes
X
Thankyou everyone for your input towards the two treatments I welcome all your help and comments I must admit being given a choice is difficult but you are helping me to look more closely at both.
Belinda sorry to hear you are not sleeping I know what it is like to spend nights awake mine is usually through pain but I have the odd night just wide awake thinking of rubbish and going to the tiolet every hour just because I’m awake makes you wonder where the fluid comes from. Hope you are soon back to your old self.x
Kiliy thankyou for your input you are welcome on the skin met thread glad you don’t have them. I also have a bone met mine is the sacrem in the spine I am to have a bone scan hopefully to see if there isn’t more mets elsewhere because of pain.
DBNO I was interested in what you said about the skin mets while on Cape lets hope the Erip can do the same.I am having trouble pronouncing them let alone spelling them.
To all my Cyber friends I am thinking of you xxx
hello everyone been away for a while in hospital again for 8 days as they decided to do a procedure on my left lung as every two weeks it was filling up with water so i’ve been in the brompton. just home today and feeling really wobbly no strengh in my legs and feeling exhausted. it was a major opration. so only had 1 day of eribulin 3 weeks ago but already my hair is falling out. ]
going to start eribulin again next thursday so i’ll let you know how it goes. feeling a bit sorry for myself and a bit helpless as cannot do much. luckily do have 5 close friends looking after me very well but next job is to find a cleaner. anyone know one in west london?
brother coming over agian in 4 days to mother hen me for a week so looking foward to that.
still only posting here even though this has nothing to do with lungs! i like the cutaneous vibe!
much love to all and will now look through what has been happening to you all whilst i’ve been in hospital. anyone finding eribulin working for them yet?
SS
Hi ladies
SS - I’m sorry you’ve been in hospital again… But I’m hoping that this time they have sorted it and you will be so much better when you’ve recovered from the operation… Glad that you have such a good bunch of friends round to look after you… Your brother also sounds absolutely lovely… You are an honorary member of the skin mets thread, we love your posts as well!!! Big hugs and sending you positive vibes, hoping your strength returns quickly…
Belinda - sending you hugs… I’m having my third cycle this week, appt on 25/11… Like you mine will be stopped if not working - we have to believe!!! ??
Hi and best wishes to everyone else…
Wolfie xxx
Hi ladies
I am watching how you are getting on with Eribulin (can spell and say that better than Epirubicin) it sounds harsh and I am wishing you both lots of luck with it, Cyber hugs for Wolfie and Belinda
SS you are so lucky to have a brother like yours what is his name. I have 3 brothers but only one seems concerned for me and a sister who is too full of herself. Sorry you have been in hospital again I hope you are feeling much better now Cyber hugs coming your way.
I seem to be getting somewhere with my dressings for skin mets the new dressing seems to be upsetting the other orginal mets and making them bleed and inflamed. So now I have gone back to dry dressings the rash the onc now admits could be cancer related. The nurse from the gp practise is now going to refer me to the Tissue Viability Service at the Hospice. I have joined a local cancer support group which is run by a nurse who had cancer back in 1965 one year before me and she looked at my ulcerated mets and thought it would be good for me to see them. But apparently they have a long backlog so I don’t know when I will get to see them.
Well it’s getting late so I will say bye for now and love to all our skin met friends xxx
Morning everyone
Hope your new treatments are being kind to you. DBNO how is the Epirubicin going I have a friend who started around the same time with this awful disease nearly 3 years ago. She seemed to sail through this treatment last year.
Wolfie I do hope you are getting along with your treatment and it is still allowing you to get up to wonderful things with your boys.
Bumpkin I do hope your Trials are not too hard on you sending cyber hugs for you.
SS hope your brother spoiling you and you are feeling a little better.
Stresshead have not heard from you for a while hope you are o.k
I wanted to share my good news with you since I started back on dry dressings things look a lot better still got the 2 ulcers but the clump of skin mets one seems to be healing (hope it’s not wishful thinking) the one on the tumour is still oozing but not quite as bad the new mets under the old ones seem to be a lot dryer and the soreness has gone. I am still undersided as to which treatment to choose but leaning more to the cape.
Well love to all and sorry if I haven’t mentioned you all xxx
Hello ladies
Marirose - that’s great news about your skin mets improving, what a relief. I’m on Eribulin (it’s that confusing Epirubicin/Eribulin thing again). There’s no sign of it working but I haven’t been able to keep on track with it because of low bloods. On the positive side, I have very few side effects, unlike poor Belinda. It’s amazing how the different treatments affect people so differently.
Wolfie - no doubt you’re planning all sorts of marvellous activities for your boys for bonfire night and Christmas. I do hope the Eribulin is working for you.
SS - good to hear you’re out of hospital. I hope you’re feeling much better with your breathing. I know how much it zaps your strength after being so incapacitated. You sound in better spirits and I’m sure your friends and brother will be a real tonic.
Belinda - you’re just a bit behind me on the Eribulin. I’m sorry to hear that the side effects are so bad. It’s really my balance and tiredness that are affecting me, apart from about half my hair fell out after the first day 1 but the rest seems to be hanging on - perhaps because I had a long delay before my first day 8. My scalp has become very irritated so I wonder if the rest is working up to falling out. Had day 1, cycle 2 last week.
Bumpkin, Stresshead, Janice and anyone else not mentioned - thinking of you all.
Hugs to everyone.
X
brill news marirose. really pleased. by the way i also have a sister here in the uk who will not speak to me since i was diagnosed. we were very close - i thought - but no. so you are not the only one. brother not here yet but friends popping round to do chores and stuff. have booked a cleaner and waiting to start eribulan again on thursday. will cross examine the onc who is very up to date with the latest trials to see if there s anything in the pipline for us ladies and let you know. still in bed but have kindle, laptop, phone and radio so not bored. love to all
Hi all nice to hear from some of you.
Bumpkin you seem to be in quite a mess makes me feel guilty for moaning about mine. My new ones are small and creeping up the between both breasts the other new ones are under the orginal mets under my left breast around the area of my chest wall tumour (2nd primary) the worst is the couple on top of the tumour and that does give me aggravation I wonder sometimes if it could be the tumour it feels as though I am wearing an underwired bra when in fact I do not have one on. When the others were oozing or bleeding they felt very sore. One of the nurses who I see said she would refer me to the Tissue Viability Service which are at our local hospice she said that they are used to this kind of thing and know how to treat it I think they are Macmillan. Would your district nurse know of anything like this? I will send you loads of cyber hugs :heart:
DBNO I thought at first you said you were going onto Eribulin along with Wolfie,Belinda and yourself. I think we are all muddled with Epirubicin my friend had skin mets appear after her treatment finished and that has put me in a position of choosing cape over that if anyone can tell me anything good about Epirubicin I would like to know. Keep battling on with Eribulin Flo you can do it.
Cyber hugs to all you Eribuliners :heart:
SS you must be feeling better being at home now do you have a television set up in your bedroom it would occupy your mind a little more being bed ridden can not be much fun. I hope the fog has not interfered with your brothers flight. Hugs coming your way 
Love to you all xxx
Hi Bumpkin
I found wearing dry dressings and keeping them in place difficult because I couldn’t use tape as they would have been on other mets. Your idea with tight cotton vests which helped but one of the nurses suggested a tubifast which is a two way stretch circular bandage. It comes in a long metre strip which I cut to fit it rolls off my right normal breast but it is not uncomfortable as I still wear the vest in place of bras. I found the spots left from the rash have tolerated it quite well they don’t flare up and the uncovered mets seem o.k.
I have been awake with limb pain most of the night and I thought of your problem with the irritation on your mets.Maybe your nurse could help you out with something like this. I always have a Atrauman (inpregnated dressing) on the raw area with the dry dressing on top.
I hope your nurse finds a solution for you it’s bad enough getting these invaders on top of having cancer inside your body. Best of luck Bumpkin I am thinking of you. xxx
Hello ladies, sorry not posted for a while but finally managed to get a few days away in the lake district. Weather not brilliant but we had a lovely time nevertheless…think we both needed the break. The only thing that marred it was the pain and misery caused by sore and ulcerating mets, which seems to be a hot topic at the moment. Thank you all for sharing your experiences. Even though i only wear loose t shirts/shirts they still rub and make my skin sore. I reosrted to a bra with a foam pad dressing given to me by my district nurse. This only served to make the scabs come off, making trhe bleeding and weeping worse. At firdt i thought the problem was caused by dresings affecting my skin but reading what Bumpkin has posted it seems like its the cancer.This is a concern as my whole breast is covered. I have had it suggested to me by other health professionals that i shold see a dermatologist so i’m going to ask my onc on thursday if he will refer me. I also asked him if i could have avastin with the taxol but he said no. I have however asked again as its coming off the CDF…waiting for a phone call.
Something you wonderful ladies mayalso be able to help with…when my biopsy results showed i was ER/PR - (0/8…my primary was 6/8) it also said that HER was just 1+. I will query this but do you think that means i am now HER2+…concerned that i may be eligible for kadcycla which is also coming off CDF before i see my onc again.
I also plcked up the courage to ask abot my TM’s…they were stable around the 30 mark but the Dr didnt really comment as they dont set any stall by them.
Bumpkin…your mets sound exactly like mine…my abdomen is covered, one breast which has spread round my side and up my back and now starting to go over to the other breast. So difficult to monitor, even with photo’s so cant really say if taxol is working. Sorry to her the trial treatment doesnt seem to be working but its good there is something else lined up. To be honest i havent looked the trial up yet…wamted to ask how often you have to go to london. Please keep us posted.
Marierose…i also got a bit confused as to which treatment yo have been offered. If its any use, i had eribulin but it didnt work. My first trteatment for mets was docetaxol and capecitebine. I was ok on cape…my hair came back…i did have plantur palmatum and my nails went black. I lost my taste and was tired but for all that found it do-able…in fact i’m sure my mets woldnt have returned as quickly if my onc had let me stay on it but thats a long story (already on here).
SS… sorry to hear you’ve been so poorly. Hope you are picking up now. Forgive me but do you have skin mets as well as lung?
Janice…i am just about to start my 3rd cycle of weekly taxol. I saw my onc last week and he thinks my mets were responding…as everything else has failed so far i really want to bel;ieve him bt i’m not convinced…i really am trying to be positive!! i havent really had any side effects apart from flu like aches on day 4/5 and a bit of nausea. My hair has thinned but not fallen out yet and my bloods are brilliant…i know these are all good things but i’m terrified it means its not working any more.
To everyone else…Janice Belinda Wolfie and anyone else i havent mentioned …lots of love and cyber hugs. xx
hi stresshead - no no skin mets lung liver and bone. just seem yo feel at home with you ladies!. also starting on eribulin this week.
OMG just had a home visit from a arometherphy lady from the hospice. it was amazing. really do feel better! felt my lungs get better as she was massaging me. really do recommend if you can get it.
Hi to everyone
Stresshead how lovely to hear from you so glad you enjoyed your holiday even though you have so much going against you. It’s not nice having to carry your aching painful and annoying rough sore smelly spotty body around well thats how I feel.
I’d like to thank you for your input into helping me to decide which drug to choose. It has been confusing the two drugs Epirubicin and Eribulin seem so much alike but I am leaning more to Capecitabine it sounds very much like Everolimus and I did 16months on that with 4 stables. Also it seems to reach the skin mets where as I collected more with e/e but that was at the end must have been when it stopped working.
As far as your HER2+ I don’t understand what they all mean mine is ER+ and as Wolfie says I should have biopsy done to find out what it is now that Hormone drugs are not working for me it is somethink I must ask the onc next week. Sorry it’s all been about me.
Eribulin and Cadcycla are under fire from the CDF also Avastin but I read somewhere that someone knows that the reason Avastin is being withdrawn is because it is not considered to be worth the money. How true that is I don’t know. Anyway best of luck with your meeting with your onc.
SS best of luck with your new treatment it sounds like the drug to be on at the moment. It’s always nice to hear from you especially when you sound alot happier after your spell in hospital. Aromatherapy is great I once had a treatment from our hospital centre for cancer ladies. I have M.S and have difficulty walking after my session I could walk without my stick and it lasted for a few days. I am going to have more.
Love to all my friends on here you are all a great bunch of ladies thanks to Jan for starting it xxx
dear marirose ms as well! cyber hugs and kisses to you. xxx ss
SS thankyou x
I said I had aromatherapy when I should have said reflexology it is a good one for the legs. Fancy a head massage bet thats a good one.
mmmm yes head massage. lovely. i’ve got another aromatheraphy booked for friday
Just a quick update ladies…following my discussion about Avastin with the oncology doctor…i had left messages for him to call me back when i tried to return his call, i never heard anything. I have seen my Onc today who has now said he will apply for avastin and keep it in abeyance should i relapse on the taxol (i’m not sure its working anyway but he seemed satisfied)…my big problem now is that is is off the CDF as of yesterday and now i may have missed my chance!! i will be so cross if this is the case when i have been asking for weeks. Surely no more mistakes can be made with me??
I have got a referral to a consuktant dermatologist to try and help with my skin problems/scabs/sores etc so i’ll keep you posted. Meantime though my husband, bless him, has got some coated wire coathangers from Sketchleys and made me a ‘frame’ which rests on my shoulder, goes over my reconstruction and sits on my ribs/abdomen to stop my clothes rubbing on my skin and also allowing it to breathe. I look an absolte sight but it is helping, at least when i’m in the house.
Hope you all have a good weekend. x
Hi Jan thank goodness you have been able to see your onc tomorrow I hope he can give you some kind of support to help you. We tend to leave ourselves in thier hands and expect them to know what is best for us. Surly you should be due for a scan to see what is going on with your mets. Maybe the question of Cadcyla (if spelt right) may be an option now that CDF has allowed funding for it. Let us know what the onc says and I hope it will give you more hope fingers crossed. x
Hi Stresshead what a considerate hubby to make you a cage to protect your skin mets I do hope you find some relief. My heart goes out to both you and Bumpkin mine are not that bad although I am petrified that they will spread like yours and Bumpkins. Please let us know what your dermatologist says maybe they could help you to get some relief. Did you find anything out about electrochemotherapy(not sure how it is spelt) I did see an article on google it looked interesting.
Well I hope the Eribulin ladies are doing ok love to everyone xxx
i everybody
do you remember me telling you about the tissue viability from our hospice who the practice nurse put me forward for she said there was a backlog. well had a shock when a nurse from the hospice came. it was so good to talk to someone who is so knowledgable about skin mets. she was going to take me off e45 and said she was changing it for one that they have found very good for skin mets and dry skin. she was changing my dressing for another and it would be a dry dressing she would contact the practise nurse to get her to prescribe it for me. she was so good and made me feel so much better if i needed her again i could do a self referal which is good because before it had to be done by a doctor or nurse.
when i find the names of cream and dressing i will let you know.
sorry about not being able to use capitals or upper carriage computer seems to have developed a fault so i may have to use my phone but i can only read replies.
thankyou belinda if it hadn’t been for you mentioning that we should have dressings prescribed i may not have gone down this route.
i do hope your next doze of elibrulin goes well also dbno wolfie ss and stresshead good luck to you and anyone else on eribulin.
bumpkin you are in my thoughts as jan and any others who i haven’t mentioned are also. xxx