Hi RRH, sorry for the late reply...havent posted for a few days. I have told the district nurse, my counsellor and my DR at loros so i have 'got it off my chest'. I dont think i really believe it myself yet as i am managing quite well to keep up the 'everythings fine' pretence. I dont see my \Onc now til mid jAN so i'll keep you posted. xx
This thread has gone a little quiet so hope eberyone is ok. xx
Stresshead, Thanks for getting back to us so we know how things stand. Basically it is a bit vague at the moment.....neither here nor there. The onc seems happy that there is the epirubicin plan to come. I just can't comment, but he must be optimistic or he wouldn't bother with it. I agree with stacey that most of all you need to talk with someone, preferably someone who understands and knows about your situation. Local hospice? Give them a ring. No harm done just asking what help they may have in that way. Explain to them. I have found breast cancer care very good on the phone.........number above. They are experienced and share what they know and have plenty of time. Does your hospital have a secondary nurse? Mine doesn't, but if you have one then get in touch. And you are right that you may well be able to have more ect on your back. It's not like radiotherapy. I had radio on my chest, and can have another go apparently because I didn't have it at primary. But only once. You and marirose have been on the frontier with ect and I have listened to you both with interest. Many thanks.
So, do try and contact one of the above. You shouldn't have to wear yourself out worrying about everyone else, particularly at Xmas. Everyone on this site is always here......even Xmas Day! I'll be here on my own........and we do think about each other here and want to reach out. Do come and moan!! Nobody shocked here!
Keeping worry to yourself is not the best if you can avoid it. I know how difficul it is to share with friends and family. Mine simply do not "get it" and it frustrates me. I want them to deal with my reality, but they refuse. Does your hospital, hospice or whatever have counseling available? I find I can go for a week or two pretending everything is okay to the outside world, but as soon as I see my counselor I am in tears talking about my fears. it does help getting it all out in the open.
Hi ladies, saw my onc and he agreed that my back looks suspicious but he doesnt want to rush in because of the frgility of my skin. I absolutely know its mets rampaging but he wants to wait till ive had my scan in early january. He was quite laid back, saying we had a plan set up...epiribucin (which i had first time round). i am scared that this wont work as it is a revisit and that i am running out of options. He has ordered me a heart scan in readiness. i'm hoping maybe some more electrochemo may be possible. Its not seeming real at the moment so i am coping with keeping it to myself (i have told a district nurse). I dont think the mets will hang around doing nothing till i get scan results in late January but my onc wont be at my appointment on 28th December so not really sure whts going to happen. if only the carboplatins effects had lasted just a little bit longer. Nothing seems to work for long, if at all. Cant see myself coping with all the gloom alone but i just want everyone to have one more christmas without worry and stress I know you;
ll all help me along. xx
Hi Stresshead, sorry to hear about thisextra worry...I agree with the
others about the way stress mimics disease...every time Iget a bit stressed I Get itchy...honestly...
i can imagine also that stress can affect your breathing too....maybe you have been breathing. More shallowly, which will mean less oxygen gets to the tissues. I ave seen that in my own sats...if im awaiting results, or had trouble parking before an appt, my sats have been lower
...I have recently been trying to. practice very long deep breaths to get myself off to sleep and it usually works,
anyway, I wish you the very best results for tomorrowx
Regarding wether to tell the family, well you have to work that out...but do you think they would prefer to know? Or would they rather you kept things to yourself? And would you be feeling more relaxed, having shared things with them?
Best of luckxx💚💚💚
Thank you for replying Daisy, with such wise words. I'm jst going to wait to see what tomorrow brings but it helps to be able to 'sond off' on here. I giess this is going to be a trearful week. Bless you. xx
thank you all for your support. I will of course let yo know what happens on Wednesday.
Daisy, my sats went down to 89..they are usually around the 94-96 mark at rest and 90-92ish on exercise so we'll see what happens. I did actually ask before this about having reglar oxygen because it seemed to help my skin and apparently cancerr cells dont like oxygen so could maybe help all ways round.
My husband and daghter have got health/depression/anxiety issues of their own and i feel that if i say anything, to my husband at least, he will be 'on the floor' and i will then have to pick him up and support him, which i dont feel able to do. My daughter will say, why didnt you tell me but she adores Christmas and i feel so guilty for robbing her of that on top of losing her mum early. It really helps to hear things from your point of view. Please keep posting as long as you feel you are able. xx
Yes, stresshead........I agree with dbno. There may be nothing much to worry about so roll on Wed to resolve things. dbno is also right that if you had been feeling ok before the exertion tests then that should be a positive. The problems you have already had before might mean your lungs are now just less efficient under stress. And skin mets can misbehave at any time without being progression. Remember the CT scan was good. So see what the onc says on Wed. We are all holding hands with you. If you find time let us know what he/she says. Hopefully you will have that calm Christmas yet! Thinking of you on Wed,
Hi Stresshead - sorry you have this worry when things have been stable. It would be lovely if you could have as stress free a Christmas as possible. It sounds like you'd been feeling okay before the oxygen review, so perhaps the pleural effusion isn't coming back. I can understand all your fears. Any pain, lump, itch etc sets off the alarm bells. I'm afraid all I can offer is a bit of moral support and keep everything crossed for you that it's not active again. Best of luck with your appointment on Wednesday, I shall be thinking of you.
Hello everyone, i'm having a bit of a 'panic' and just want to get things off my chest (if only i could really do that!!). I went for an oxygen review last week and was expecting them to take my portable oxygen away as i hadnt had to use it but when i did the exercise test she told me my sats had dropped on exertion and i wold need oxygen. I am now frightened tht the pleural effusion is on its way back. Also, for the last few weeks my back has been really sore and itchy where i had mets and electrochemotherapy. Now the area has gone lumpy so i am convinced the skin mets are active again:my lcerated mets have also broken down again. Dreading seeing my onc on wednesday. I thought after getting a stable scan i would be able to enjoy christmas. Mow i am struggling to paint a smile on so that i dont ruin it for everyone.
Thanks for listening. xx
Well said, stresshead. You are so right that the 'real beauty is in the memories'. But i know myself how 'things' can be so irrationally important. I lost my mum's engagement ring.......I assumed that I had given it to a jumble sale because I donated the little box that it used to be kept in. i was devasted, but in the end I found it, safely put in my own jewellery box. My memory! But i still miss her, and although I know that I have her ring safe and sound I also know that remembering the good times we had together is the best. Those good times cannot be lost.
Lots of love to you, Daisy. The replacement necklace is a powerful symbol of what you lost. Your little boy will love Christmas! And did I understand right that he has a December birthday? I wonder if he will have a chance to meet Santa? I went with my little grandaughter, Anna, last Sat. She wore her Elsa Frozen dress for the occasion!
Love to everyone here. Jan, I hope you have settled down now, with help from the hospice. Marirose, how is the Fulvestrant going? Are you still leaving the dressings off? It sounded such a good idea for you.
I'm so glad that the days will be getting longer again in just a few weeks. Whoopee.
Daisy, sorry to hear no one has handed your necklace in but glad to see you have managed to find a sitable alternative...i wont say replacement cos nothingn could replace that one. Just keep remembering...although it is nice to have something 'real', the real beauty is in th memories you will always have, no matter what. xx
Daisy, thank you for your postxx have only just returned to this thread, but when I read your post it made me sad. I think I would have really treasured that necklace too..so sorryxx actually I lost. My mums wedding ring not that long after she died..and altho it was her replacement one, I was so upset.
'things'matter so much to us, dont they? I must admit i have a lot of things which were my parent's and cant get rid of them..but when I fall off. My perch...noone else will really treasure them...People are so important..much more than objects...but im like you, treasure things from people I love💝
hopefully it will turn up for you
OMG...have jst logged on and read last two posts which mention Smartie....havent looked anywhere else yet for information but seems we have lost yet another brave, courageous and beatiful lady to this god-awful disease. My thoughts go ot to her family and friends. Rest peacefully Smartie. xxx
Jan, sorry to hear you had such a bad reaction to te little pill. I have also used oramorph and have been fine on it. Only thing is i dont seem to be able to wke up in hte morning!
Marierose, glad to hear you are getting on top of the skin mets. Mine are still breaking down so darent risk going without the dressings. I wish i could sometimes leave them completely uncovered to let the air get to them but highly impractical.....leg ulcers, yes....boob ulcers, NO!
I have an urgotul ssd dressing (contains silver, meant to be good for us) and a kerramax over the top. Becase i react to adhesive dressings these are justheld in place with a 'sports' bra top or genie top as i have heard them called.
Love to all. x
I absolutely agree with you, Marirose. Somebody knocking on the door doesn't sound right. A chancer. And yes, Jan, it must be illegal. But like a lot of things it will slip past. You were very sensible, but I would worry for more vulnerable people being taken advantage of at a difficult time. You said they mentioned children with cancer. And Jan, I noticed your hard time with zomorph. But pain management via the hospice was the way to go. They won't try zomorph again! i hope it is all going better now.
Take care everyone, and prayers for smartie tonight,
I do hope you didn't fall for it if it was genuine why knock on doors and why is there no publicity about it in the papers and television. I think I would be very aware of this. Glad you are feeling much better Jan have they given you an alternitive to the zomorph I have used oramorph for really bad pain last week and it did ease it and it was gone in 3 days. Wishing you all the best love and (((hugs)))
Hi to my other skinny friends
stresshead since I have not been putting a dressing on my ulcer and mets they seem alot better. I wear a vest and let it take the mess but I am getting very little blood stains none last night. The skin mets else where don't look good a little red and more swollen I wonder if it is because I have come off chemo. I keep wanting to ask how do you keep your dressings in place I use tubifast but now I feel as though allowing air to get to the sores is more help.
It was so sad to hear Smartie lost her fight I do hope our other friends get in touch.
Love and ((((hugs)))) xxx
Wow you have been through it haven't you what was the little pill they gave you? I am glad you are now feeling better it gets scary when we get different things happening with our bodies. People don't realise the trauma it can cause when you know you have multi mets in bones organs and like us skin you think "oh no not something else"
Anyway pleased for you that you are now ok.
Love and ((((hugs)))) xxx
Well I have had an awful 2 weeks,started with a new pill I was given and told to take at night because it caused tiredness. This I did and woke at 4 in the morning didn't know weather I was hot or cold,shaking and being sick. The following day wasn't any better so phoned to let the doctor know what was happening. This was now Friday, felt confident it would improve but it didn't. Over the weekend I couldn't eat or drink due to pain when passing food. Knew I was seeing. McMillan nurse the following Wednesday so not too worried but I shouldn't have waited, I still wasn't eating drinking or going toilet.
When McMillan nurse came she called my GP and between them arranged for me to go into our local hospice for pain management. Things have now improved I can eat and drink although my appetites not great.
Been out today,first time in nearly 2 weeks.
Can I really blame a little pill,but that's what kicked it all off,needless to say I haven't taken any more.
Daisy, than you so much for posting. I'm so sorry to hear abot your necklace...i hope by now someone has had the guts to own up and hand it in. Dont know how some people live with their conscience. Thank you too for your very wise words...everything you said is true. I am convinced that i hae progression, if only in my skin and i am frantically trying to make ways into de-toxifying, using essential oils, gleaning info on substances we have to be hush hush about etc..when what i should be doing is enjoying myself and doing happy things.
Like Nicky, i too, lack the incentive to book things although i do try and get uot with my friends as often as possible, even if it is a struggle at times.
Marierose, my mets are as bad as ever...total breakdown and are now very sore and itchy. My back also feels lumpy too. Trying not to focus on it and follow Daisy's ethos but very difficult. Will trry and get more into the festive spirit as quickly as possible!!. x
To echo Marierose.....Janice, Smartie, Tournesol and Sharon...you are always in my thoughts. Hope things are going ok. xx
Hi skinny ladies
I read this thread and catch up with your treatment news, and issues, most days as I'm sure many of us secondary ladies (without cutaneous mets) do. Having said that I haven't done so recently so apologies for not knowing what is happening to you all but wishing you all the best with current treatments and always hoping that things are improving but worried with you when they don't.
The main reason I posted, and read, today was seeing Daisy's post. I wanted to wish you a happy birthday but realise it won't be quite the same without your Mum being there. The other thing was to say how sorry I was that you lost your necklace and how angry it makes me as well when people don't hand things in that they have found. I hope your note pricks someone's conscience and they hand it in. What I did want to say though was what an insightful post your wrote about how precious the time is that we have left. Whether we are ill or not so many people don't appreciate their loved ones and when we are ill the treatments and side effects take over and we forget to spend time with the ones we love. I have had various set backs over the years which have concentrated my thoughts on what I want to do. I have stopped accepting things or invitations that I don't want to do and try to do or arrange things that I want to do. Recently I have had some progression in my liver and although I know I still have some treatment options available it makes me know that I am ticking them off and time is limited. I have also, a few years back at a particularly stressful time, written my thoughts and feelings in a journal for my family to read either when I die or before if they want to. I've also said in it the items of jewellery or even everyday items I want them to keep as a reminder of me and to use or wear them. I hope, Daisy, that you have kept some items from your Mum that will make your memories sweeter and you will feel closer to her when you see them or use them. I read many years ago about Nigella Lawson keeping and using wooden spoons that belonged to her mother which I think is a lovely idea, nothing that valuable but maybe even more closely associated wit her Mum. Sorry if this is a ramble but I just wanted to say, thank you Daisy, and we do all think of you still. Keep in touch when you can.
Hello skinny friends and others
Daisy I am so sorry you have lost that necklace which meant so much to you as I can understand because of the involvement with your Mother. Life seems to be so unfair at times and also on your birthday holiday I wonder if it will be handed in. Wishing you some success
Smartie, Tournesol and Sharon I do hope you are still reading our thread it would be nice to hear from you I do hope you are all ok.
Janice you are also in our hearts and I hope you are getting some quality time on your journey without treatments
I am going through a funny time with my mets different ones keep breaking leaving a little blood but then I cannot see where it has come from. I have decided to leave the dressing off just relying on my cotton vest and letting what is oozing to out collect on the vest. The ulcer has started to heal and is not oozing same with the other met that broke down so I will have to see what happens might be wishfull thinking its only been 2 days.
Love and ((((hugs)))) to you all xxx
Hello ladies, thread seems a little quiet at the moment...hope everyone is ok and just busy trying to get festive.
Saw my onc yesterday and my mri showed that i have collapsed cervical discs in my neck but apparently they are not cancer related??? All seems a little too co incidental to me but i am trying to take what i'm told as fact. At least as far as everyone else is concerned it means a worry free christmas , so thats good. He checked my skin and was happy there was no progression. Says i have to accept that the skin will keep breaking down without it meaning it is getting worse so will just plod on with my dressings.
Please post asap, even if just to say hello. Lots of love. x
Oh Marie rose, how frustrating for you. Lets just focus on the good news and take hope from that....i'm sure the liver mets will get sorted along the way. What an odd thing to put you on, fulvestrant, when like me you are hormone resistant???still, they must know what they're doing...lets hope it does some good...will be interesting to find out wont it...please keep us posted. I get very frustrated with my mets...one day thedressings are clean and i think 'yay, cracked it' bt then the next time they are weeping/bleding again. district nrse said thiscan happen for lots of reasons inclding bloods, stress etc so i try not to worry too much. I'm still not convinced they aren't worse though. I had been thinking my neck was getting a bit better bt think i'm kidding myself...will find out on wednesday...dont seem as tense as i am normally waiting for results but i'm sure that wil change as the day gets nearer. Try and keep your chin up. Sending much love. xx
Marirose, This is just to say I have read this post...........you have been through the wringer today! I won't say much now as I should reread it carefully and right now I am so sleepy I can hardly keep my eyes open! At first I thought this will be all bad news because you said you were feeling angry & confused, but in the end perhaps going onto fulvestrant is a good thing at this point? I'm optimistic. I know there are fulvestrant/faslodex threads here which could be interesting, with advice too. So I'll have a better read tomorrow after.....hopefully......a good night's sleep! Take care. You have a good sleep too. You have had an unexpectedly busy day with changes you weren't prepared for. Did you actually have the first injection today? Isn't it nice to encounter kind and understanding nurses? It can make a difficult hospital trip so much easier to survive. Goodnight,
Hello Skinny friends
I have had a bad day today and feel annoyed angry and confused. I went for my weekly chemo taxol today the nurse had to fill in a questionnaire she asked if I had any sores not healing so I told her about my ulcerated skin met. She wanted to look and she said she wanted to send me up to the main breast cancer clinic to see the treatment nurse. So when I got there I had to wait only to see the registra who I saw back in June before I had my ECT. She seemed to have changed become more serious and not as friendly as she used to be.
She looked at my skin mets and the ulcer I told her I was treating it myself with the same dressings I had last year and I had seen my GP regarding it. She went off and she was gone for a while when she came back she was a little different more friendly. She had been discussing it with the onc who is standing in for my original onc. They wanted me to stop Taxol and go onto to Fulvestrant injections. I was so upset that I was to be put on a hormone drug when I had already been told that hormone drugs were not working for me after Everolimus and Exemestane I really questioned her about it. But one good thing she brought me the information booklet and my recent CT scan.
The scan was not good well mixed I asked for the good first my lung mets had reduced from 11mm to 8mm with no other involvement within the lungs.The bad news my liver mets have increased the biggest from 38mm to 56mm.
So here I was being put on a hormone drug she went out again to set things up for me to have my injections down on the chemo ward. She came back in with a BN who I have never met before she is new and she was lovely the registra explained why the onc had taken me off the chemo as my immune system is down and my HB was low it would be difficult for my ulceration to heal. So ok I settled down and off she went and the nurse was chatting when I ttold her I had noticed my water was quite yellow and I was drinking lots of water to help weaken it. So she suggested taking a water sample for her to send off and they would give my GP the results.
As I was coming out my BN was there to greet me we have not seen each other since I started Taxol she hugged me and when I told her what I was going to have she said the onc was putting other ladies on it they thought little about it but were suprised that there has been lots of good reductions. Both BN's told me to give them a ring if I needed them. My hubby was waiting for me and said my BN had come looking for me. So that was nice she heard I was in the clinic and came to look for me.
Well back down in the chemo unit I had my chemo nurse who sent me to get checked out give me a big hug when I got back there are some lovely people about.
I have read some old threads and Jan you were there also Smartie and thankyou I have a little more faith than what I first had.
Sorry to go on so much stresshead I do hope you get good results from your scan I am hoping it will not be what you think it is.
Love and ((((hugs)))) to you all xxx
Marierose, sorry to hear about the farce with your results...as if thinsg arent stressful enough.
I got my letter from my last consultation today, just as i was going for my mri. When i saw him he told me there was a tiny nodule but it may have been there previously. My letter today says there are two nodules in the trapezium area of upper neck...i looke dit up and that is where i have been getting the pain. I cant see how this can be coincidence and am now on a downer again.
RRH..i have had an mri before and dont look forward to them as i am a bit claustrophobic. At least this time i didnt have to be cannulated. Only trouble is the music machine was broken so had the company of the pneumatic drill for 20 minutes!!
Love to all and have a good weekend. xx
sorry i hadnt replied sooner, was being ' tanked up' again with my Eribulin today! Have decided to plant a caravan in thr hospital carpark in future as when i got there here were long queues ....the arm wasnt being raised until a car came out of the park! Never seen it like that! There are so many trials going on now that even the chemo chairs are full...i went to mine and someone was in it! The mri dept is running clinics every saturday now...and evenings too for ever apparently.
on the bright side. They got my vein first time and I was out after about 30 mins...was given a sandwich and tea and biscuits...as it was lunchtimr.
Smartie, have chatted on the bone mets thread, buthope things are a little betterxx Marirose, I am on the same page with your situ. Hope you are ok. Also Stresshead and everyones elsr.
Marirose, Isn't it funny but I had a feeling that you would be a bit disappointed yesterday re results. That is to say actually getting the results rather than what the results were. Ho hum. And now that you know about the radiologist situation.........not enough of the highly trained........I think you would be fully entitled to raise this in 2 weeks and discuss whether a review might be needed with the onc. Of course the errors the onc mentioned, once realised by them, might be why it is taking so long now...........reviews of everything by experienced radiologists before release. But I would discuss that. You could even throw in the thought of a second opinion if you aren't totally happy. Others do it and we are all entitled to it. The scans have been done, you are looking for certainty in interpretation. But the radios may have themselves organised now, just leading to slower release.
But.........on the positive side you are feeling good! That is good news and long may it last! Now fingers crossed for you stresshead, on Friday. Have you had an mri before? I haven't, but I've been told it is noisy! I think sometimes they can play your chosen music to help distract. Let us know how it went. Then I suppose you are waiting for results too. Good results!
Off to start the day. Take care everyone...............tournesol, smartie, dbno, janice, moijan........everybody!
Hi skinny ladies
I went for my review with the onc I met the other consultant onc working with my other onc both are standing in for the original one on maternity leave.
She was ever so apoligetic as she said I bet you were hoping for your scan results. Apparently they are short of radiologists who are experienced to analise the scans and so it is taking up to 2 weeks for the results. She said that there has been alot of mistakes and errors, so that gives me very little confidence in wheather they are fobbing me off or have my recent scans been right.I now have to wait 2 weeks now.
Daisy it is lovely to hear from you please keep posting you an your family are still in our hearts xxx
Stresshead great news about getting your MRI for Friday. Lets hope all your worry has been for nothing sending good cyber vibes
Love to Mo DBNO Janice Moijan Tournesol Smartie and others following this thread
Love and ((((hugs)))) xxx
Carolyn...i feel really bad now..a real couch potato!! I totally agree with you about getting ot and about. We used to try but since my hubby has had a bad knee even a walk is difficult...if its not one of us its the other!! I am going to try and follow your example though.
Marierose...so good to hear yo havae got your dressings sorted out. I agree about the district nurses though...i have sggested that i go down to once a week becase it is a pain waiting in 2 days a week. Have everything crossed for your scan results. Have got my mri on friday so that was pretty quick. Just keep hoping it will be nothing but i suppose its better the devil you know!
Mo, great to hear from you. Please dont ever think you have nothing useful to say....we would love to read anything yoou post. Glad things are ok for you at the moment.
Daisy, lovely of you to keep an eye on us. It was heartwarming to see you are recaling lovely memories..gives me hope that my daghter will be able to do the same. One of my lovliest times with her was when she took me to the Savoy for afternoon tea and then we saw phantom of the opera...a briliant weekend, even if i had only just started to get my hair back.
Sending love to all my skinny friends and especially to Smartie, Tornesol and Janice. xxx
Daisy, So nice of you to drop by! Still thinking of you and hoping you are coping. I remember so well your trip to London and the Ritz! What a good idea it turned out to be...........a wonderful day together and a perfect memory for you now. Your mum will be smiling!
Marirose, Thank you for thinking of me! I'm fine......still feeling relieved that my scan about a week ago was stable. He has put off the next scan for another 6 months which in one way is good, although I will start to worry round Xmas! After reading your latest post I am now crossing my fingers for your results on Wed. I am hoping that everything is fine and moving forward. And so good to hear that you are feeling well on paclitaxel! All these treatments come with such a long list of possible ses so it is really heartening that you are feeling well. Anyway, thanks again for asking where I am. In fact I drop by here regularly, keeping up, but don't often have anything useful to add so I keep quiet.
Stresshead.......I agree about the short days. The older i get the more I hate them. Indoors today it was feeling dark by 5pm so putting the lights on. i love the long summer evenings, outside in the garden at 10pm. Now I feel the day is over, and don't feel like doing much. Flop in front of tv. I get extra vit D with my adcal, but it doesn't seem to help. I'll have to get out for walks as carolyn says. GPs and open wounds? It doesn't surprise me really as being a GP is more of an office job these days. It's the nurses who do all the hands on. And I think you were right to go for the mri..........the chances are good that it will be negative and you can just relax. Sometimes we have to take the risk, and go for it............risking a bad result that is. But a good outcome will be worth the worry. Let us know. It was probably offered just for that reason.......to put your mind at rest.
Well, washing up calls from the kitchen. Take care everybody! And good luck for Wed Marirose, if you get your results. I'll be thinking of you,
Hi Skinny friends
Jan I agree with stresshead get your feet up enjoy snuggling up in pj's through these dark nights. I am doing quite well with paclitaxel infact I have not felt this good for ages. The head has still got a covering of hair although it is starting to get very thin and dropping out now. I am on cycle 7 this Wednesday and I also get results for my CT scan hopefully.So we will see how good it has been for me.
stresshead I have been able to get my expensive dressings I saw the GP today and he prescribed them for me.So at least I can now use the right things I really don't have much time to be going to see the nurse twice a week with the taxol being every Wednesday.
Mo are you alright we have not heard from you for a while please get in touch.
DBNO thinking of you also
Love and ((((hugs))))) xxx
Hi.Janice i know the dark nights can drag on but try to think of warm cosy nights in your pj's watching tv and scoffing rubbish..thats what i do and i begt Caroyn does too, knowing her love for chocolate. I know you are letting nature take its course (you are one brave lady) but have you considered trials?
i have just learnt that at my hospital there is a research dept who can put out a nationwide alert for when there are no options left (or very few).to see if there are any suitable trials. Obviously would have to be able to travel and may not be of any use to you but just thought i'd mention it...may be useful for others too.
Take care, lots of love. xx
I was suppose to be on eribulin moijan it would have been my 7th chemo but after just one infusion I had such a bad reaction it was decided to stop. That was my last treatment option so I am letting nature take its course now. Hope you tolerate it and you get good results.
Marirose how are doing on Paclitaxel? I had 26 altogether,so much toxic in my body no wonder it's had enough.
A doctor that doesn't like open wounds, that's a first for me.
Good luck with your MRI scan stresshead, I hate those so clostrophbic.
Well an extra hour tonight,but I hate the short daylight hours.
Thank you all for your good wishes...just have a nagging fear about this mri now...can i never win??
Marierose, please go to your surgery and get sorted. You shouldnt be put off and left to suffer becase a stpid doctor doesnt like open wounds!! You should have a district nurse come in to change your dressings etc. I know, as you say, sometimes all they do is literally put a new dressing on bit they can se and monitor the woulnds and take action if necessary. Also like one of them pointed out to me when i asked if it was worth them coming twice a week, she said they are also there for support, someone to talk to etc and i have to say they do make a difference in that way, at least for me.
Moijan, dont worry about being the only eribuliner...if its working for you thats all that matters.
Love to all and have a lovely weekend. x
You are always welcome on this thread we used to have 2 other ladies on Eribulin who prefered to join us sadly they both are no longer with us I certainly hope it's not bad luck on here for our Eribuliners.
It is my own fault for trying to manage my ulcers on my own I know I need to see the nurses again at our local surgery and I need to go through the proccess of seeing the Dr who is on holiday until next week. Last time I saw a lady Dr and she rushed out of the room when I told her I had ulcerated skin mets she came back said come on and took me to the nurses room. When I asked them why had I got that reception from this Dr they said it was because she doesn't like open wounds.So you see I am relunctant to go there but I know I should. I practically healed my own wounds last time all the nurses did was get me the dressings and just check the wounds.
But I am watching your progress with Eribulin I was hoping I could get on to it. I was on E/E combo and found myself on my own as everyone didn't manage the drug for long and I went on for 16 months.
Well love and (((hugs))) xxx
Hi Marirose, Stresshead and everyonr, was just feeling cross with myself....for feeling lonely now that Helen and Sharon have left me alone on Eribulin. But reading your exploits on here, I have just given myself a very loud smack!
Marirose, if you need those special dressings to get comfortable, then they should give them to you on the NHS....you shouldnt have to scrimp and savexx
stresshead I am so pleased you had some good results now lets hold out for your MRI being good at least you will find out if there is anything to worry about. I am glad you didn't let your hubby talk you out of it.Your Tm's sound good also. As far as your groin goes it sounds as though it is something not to worry about do you ask for a copy of the results? I have started to ask for mine I tend to read more into them but at least I know what is happening with my body and it gives me some ammunition to write questions to ask the onc like the spine scan does not mention my tumour on the sacrum which I have had since first dx.
Well Christmas will soon be here and you can make plans to enjoy it fingers crossed.
Love and ((((hugs)))) xxx