Hi ladies, feeling a bit down so apologies for putting on you all yet again. I havent said anything to anyone here (though i did mention it to my onc) but i’m convinced my skin mets are spreading. My abdomen has gone from a few red blotches to one massive one, i have new nodes under both breasts and spread in my left breast. I have been taking photo’s regularly but still find it difficlt to monitor. Just started 3rd cycle of taxol and was really hoping this one woild be the one to succeed. On Thursday my onc said those on my back were better but have just had letter in which he says they are all the same but i definitely have more…they are well and truly on my other breast now and are even around my picc line: i had been having alergic reaction tho the dressings/micropore but now it seems it was more mets. I’m absoltely dreading my next visit. I know there are very few options left for me and i’m getting through them every two months.
I havent heard anything about the electrochemotherapy appointment yet and my onc said to give it a few more weeks. When i see the dermatologist who also does a lot of work with skin cancer patients i wil lask her about the immiquimod an d floraracil creams…i feel now i have nothing left to lose by trying them if only someone wold prescribe them! I also asked my onc abot my HER2 now being 1+ not negative and did this mean i cold have herceptin/kadcycla and he said anything below 3+ is negative not positive so that door closed striaght away.
Janice…i so agree with you about not being able to make long term plans and not appreciating your health when you had it…if only we could turn back the clock…
I try to abide by the mantra " i am living with SBC not dying from it" but its getting harder.
I’m so sorry for the low mood and burdening you all bt as we say so many times yo are the only people who really understand. Pease dont let me put a downer on your weekend.
dear stresshead how worrying for you. do not think you are putting a downer on me we all live with these thoughts all the time sometimes at the back of our brains but often at the front especially when we think treatment is not working. if the taxol is not working and you are running out of options (like me) we need to think of trials. talk to your onc what is available. there are a lot of trials out there do not let him fob you off and if they do not do trials there go somewhere else for a consultation. the other thing that has always bugged me about your treatment is that they took you of cape when it was still working. you can stay on cape indefinately, so if it still working insist the put you back on it and if you are not happy with their respone go and see someone else.
sorry to be so bossy but that cape thing has always bugged me.
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.
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
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
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
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.
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
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
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.
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
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.
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
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.
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
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