Hi again seems I’m writing too much
Stresshead genie bras are those that go over the head and are stretchy and thats where mine went when I got home over the head. It was good though Bumpkin for being examined as you say it was easy just to pull it down.
Jan hope you are doing ok with your treatment.
Anyone I have missed I am sorry bu I wish you well Thanks for putting up with me xxx
Good evening ladies
Ladywolf - that’s a real blow about the Gem Carbo no longer working. Eribulin might be the one to keep you stable though.
Marirose - the fact that your onc doesn’t think it’s spread of the skin mets is promising. I hope the antibiotics and antihistamine get the rash to settle quickly. Good news too that you’re getting help with the ulcerated mets.
SS - I hope they can get your breathing sorted soon and that the carbo is doing it’s job.
Bumpkin - I hope you’ve had a better day today. I notice there’s a new series of Poldark coming up soon - something to look forward to.
Wishing all the best to the other ladies.
X
thank you girls it is a relief to be able to share our rants. Wolfie so sorry to heat about carbo. i have heard good things about eribulin though. fingers crossed. have you sorted out your wig? I really shouldn’t be writing on this thread i i do not have mets to skin - lungs liver and bones, i hope i can be a guest on skins met though SS
SS - of course you can join in with this thread. We all have mets, whatever sort, and if it helps you to share your feelings here then go right ahead, we’re all here for each other.
X
Hello everyone Haven’t posted much as I am feeling a bit down and didn’t want to pass it on. You all seem to be grabing every treatment offered and I just want to bury my head in the sand and pretend its not happening. Think I have said before I have been offered weekly Taxol starting in the new year providing things don’t get worse before then, but it would be indefinitly, providing it works, and I really feel I am not up to that. Stresshead did I read you are doing that, if so how are you coping with it? As soon as I finish one, only finished ec a few weeks ago mets come back. Mine look red and like someone else said feel leathery. Seems a few of you have had hospital appointments this week with mixed results, hope you are coping, have a good weekend,I do believe the sun is joining us,something to look forward to. Take care Jan.
Hi ladies
SS - jump into this thread anytime you like… It doesn’t matter where your mets are, we are all dealing with similar emotions and issues… I for one value your advice… I haven’t sorted wig yet, both chemo nurse and onc say I won’t lose my hair!! I have everything x’d!!
Janice - I’m so sorry your feeling down, please post as much as you can, we will all try and lift your spirits, and we know how you feel (or as close as poss)… I too feel like doing an ostrich impression, yesterday I refused to answer my mobile phone - so scared it was hospital ringing and I just couldn’t face anymore news from them… So please don’t feel your on your own in those feelings… Maybe we could stick our heads is the sand together??
Marirose - it’s sounds good the onc doesn’t think the rash is cancer related… I am hoping that it is something which can be treated easily ??
I’m having my first dose of eribulin on Tuesday, it was going to be today but the Hosp could get hold of any… Apparently it is so expensive it’s not stocked and with only a short shelf life… They have be ringing round all the midlands hospitals with no joy!!
Have a lovely weekend ladies, I have heard the weather is going to be nice ??
Wolfie xxx
Hi everyone I do hope you are feeling a little better today.
Jan I am sorry you are feeling low I can understand where you are coming from to be told your future treatment will be your last must be awful it is bound to make your thoughts go all over the place lets hope it’s a long time coming before you need it sending you loads of Cyber hugs :heart:
SS you are very welcome to join us (not for skin mets though don’t wish them on anyone)
DBNO,stresshead,Bumpkin and Wolfie and anyone else I have missed I am sorry
This morning I had an appointment to see practise nurse.I didn’t really want to go but I needed help with the dressing as I hadn’t put it on correctly. I was very down I feel I am rotting from the outside as well as the inside my ulcerated mets look awful and now 2 more look as though they are going that way. No treatment or bone juice for 2 weeks would that cause more trouble. I had an app for the practise nurse I didn’t feel like going as I had more help from the hospital nurse but I am so glad I met a nurse that sympathised and she prescribed me lots of dressings and advice she was great. I got there in the end. Hope you all have a good weekend xxx.
Hello ladies
Janice - please don’t feel you shouldn’t share your feelings. It’s when you’re down that you probably most need the support. I’d hate to think of you feeling down but keeping it all to yourself. I’ve withdrawn a lot from my friends because I just feel like I don’t really fit into their world anymore. We live in a parallel universe and I’m so grateful to have you ladies to talk openly to. So, if you really don’t feel like talking, that’s okay, but don’t avoid it because you’re worried about us.
Marirose - that’s great that you now have another nurse who you can rely on. I must admit, I find the care I get from my oncology unit first class (not my home area though, I had to move to a different unit because of the despicable oncologist in my own area).
Wolfie - we’ll be able to compare notes with the Eribulin.
Best wishes to everyone else.
X
Hello ladies…have just caught up with the thread…apologies is i miss any one out.
SS…welcome…your input is always valued wherever yo post.
Ladywolf…so sorry ti hear gem/carbo not working. It seems none of us are having much luck with anything at the moment. I had erubilin which didnt work but i’m sure it will be different for you. I didnt have many side effects apart from fatigue and my hair just thinned a little bit. Have had 2 parts of the first cycle of taxol…cant see any improvement bt not sre if its any worse. I have so many mets now it is virtally impossible to monitor. I have asked for more biopsies to determine my er stats, as i now seem to be both + and -!! as my next move was going to be everilimus(??)…i know its given with a hormone therapy so not really sure if it works on er-. Very scary that these treatments all seem to be failing so quickly with very few options to go at. As
DBNO says…i too have withdrawn from ‘normal’ life…i have nothing in common with anyone any more and i too feel like i’m on another planet. I do fel gilty thogh because all my friends still keep texting and asking me to meet them or to visit but i st keep putting them off.
Marie rose…i sympathise with you over the rash but its promising that they dont think its cancer related. I seem to notice more and more redness…at the moment its creeping p to my neck and at the top of my arm…its also very hot. My mets started with a rash so i’m beginning to panic.
Janice…please rant and rave as much as yo like. We all get down…i seem to be more down than up at the moment…i have a battle in my head: one minute i think something will work for me, the next i think ‘i am dying’ but somehow its not registering. I dont know how i’ll cope if another treatment fails quickly.
BUmpkin…how are yo doing?i do try to take your advice and not let this thing get on top of me but i do find it difficult. Please keep posting …you are an inspiration.
Love to all and anyone else i’ve forgotten. xx
Hello ladies
Stresshead - I hope the Taxol works for you. I can understand you wanted to find out for sure what status your mets are. At least then they’d have a better idea about treatments.
Wolfie - will be thinking of you tomorrow. Best of luck with the Erbulin.
Best wishes to all the ladies. I hope you sleep well, or as well as can be expected.
X
Dear Stresshead so sorry to hear things are not working for you at the moment. Has your onc looked into trials? In the meanwhile I am here thinking of you and sending you all the best possible positive vibes. My breathing is still **bleep**. but just about managing. Glad I am off work as could not cope with that at the moment. Had my brother stay with me for 4 days and he looked after me like a mother hen So sweet.
Hi ladies
SS - I’m sorry your breathing is still cr*p, here’s hoping it improves soon… I bet it was lovely to see your brother, esp as he’s shows he cares so much by fussing over you… I hope you enjoyed every minute… My brother disappeared when I got my secondary diagnoses… Haven’t seen him or heard from him for months… I did used to think we were close ?
DBNO - thank you for your good wishes…I hope your chemo will go ahead on Friday… Here’s hoping it blasts our aliens into oblivion!!
must be honest tho I’m quite scared this time!! And my mets seem to have flared up a lot since I last saw my oncologist… She gave me some steroids to cope with the pain, so I’m hoping they are making them flare initially!!
Stresshead - I hope and ?? that the taxol works for you… Have you noticed any improvement yet? I would have thought that the oncologist would have automatically asked for the mets to be biopsied again so that they get the right treatment for you… Might explain why you didn’t get the best results from other chemos…
Janice, marirose, bumpkin and any other ladies I’ve missed, I wish you all the best with your chemos, results, scans etc…
Sending everyone a cyber hug…
Wolfie xx
Hi ladywolf. yes, he was great. However, just like you my sister has completely dissapeared - refuses to take my calls and will not speak to me since my illness. I also thought we were close. You just dont know how people will react. `i lost 3, what i thought ,were close friends as well. e all seem to be going through a rough patch at the moment don’t we. Lets hold cyber hands to give each other strenght through these difficult times xxx
Hello ladies, I’m awake late tonight.
That’s so sad that close family would turn their backs on you when you most need them. It may be hard for them to cope with but how hard do they think it is for you? I’m very lucky because my brother really goes out of his way to help me, nothing’s ever too much trouble.
Wolfie - I hope you’re getting on OK after today’s dose and that you have as few side effects as possible. I saw a fascinating little video clip on the Southampton University Immunotherapy website which shows killer T cells that have had their killer instinct turned back on via the immunotherapy vaccine and this one cell is wandering around and in seconds it eats a whole cancer cell then promptly moves on to the next. This is what I’m imagining your Eribulin doing. Check it out it’s at: southampton.ac.uk/youreit/#immunology scroll down to the video called Immunology: Cancer Assassin.
SS - I hope your breathing improves soon. It must be very distressing when you’re struggling to breathe.
Bumpkin, Stresshead, Marirose, Janice and anyone I’ve missed - thinking about you all and hoping things are improving.
Cyber hugs to everyone ((()))
X
Hi ladies
Dbno - I’ve looked at the link… Very interesting and promising… Thank you for sharing., I had my eribulin yesterday… The infusion only lasts for 5/10 mins - my chemo nurse ran it very slowly as was my first time… And today I’m feeling well (tbh it’s worrying me how well I feel, what can i say I worry when Ill, worry when I’m not!! Lol)… Just to let you know my chemo nurse came round with some inter muscular injections saying that I would need to call the district nurse out to inject me should I start getting sickness… I queried this and he stated that the Hosp hadnt yet done a pharmacy prescription guideline (or similar) because the drug is new and they have borrowed an old one (this old one shows these injection should be sent) apparently the drugs have to go to review boards to get a standard prescription template etc… He did say was unlikely I would be sick!! I hope all is still on course for you to have your chemo on Friday and that the mets are not too bad… I’ll be thinking of you, pls let us know how you get on.
Chemo nurse also gave me some tips about keeping my hair - not to wash it often esp when transfusion just done (I now have greasy hair!) and to use thickness shampoo, no pulling hard and not to use heated appliances… My chemo nurse is very good, I have every confidence in him so fingers crossed he’s right again…
Bumpkin - sorry you have been poorly and in hospital… Hope you feel better soon,. And keeping my fingers x’d for your appt tomorrow at uclh… Hope you get on the trial and it works wonders… Pls let us know how you get on…,
I’ve tried many times to contact my brother, but with no joy… I have accepted it now, and there is nothing I can do… I have one very, very good friend who I rely on and tbh she has taken the place of my family now (all blood family have passed) and is going to look after my boys should I not be here to do it myself., illness tends to make or break friendships!! ?? I’ll take my blessings…
SS - hope your breathing is getting better?? And I agree we all seem to be going through a rough time at the moment… Here’s hoping it settles down soon!! How’s the gem/carbo?
Marirose - how’s your rash ? Hope the antibiotics are working on it… Hopefully won’t be long now before its sorted for you… Waiting is the worst…
Stresshead - how are you, how’s taxol treating you??
Janice - hope you are feeling a bit better now… I’m thinking of you… It’s horrid when you are feeling so low…
To any ladies I’ve missed, or those that just read posts for comfort/support ‘loads of cyber hugs’… Have a lovely day ladies…
Wolfie xx
How annoying - I’ve just spent ages replying to this thread and it’s disappeared before I got chance to post it. Here goes another try.
Bumpkin - I’m so pleased you’re home but a bit of a b*gger about having to have all those steroids. Maybe send your family away for a few days? I hope you feel better every day. I’ll be with you as a virtual presence tomorrow. It sounds very promising that they specialise in TNBC research. Can’t wait to find out what they have to say.
Wolfie - well done, first dose sorted. I think if you’ve got through yesterday and today without any sickness it’s quite promising. Whenever I’ve been sick of IV chemo it’s happened within a few hours. I’ve had Cyclizine injections in the past and they were an instant cure for the sickness. Don’t worry about feeling well, remember I felt very well on Gem Carbo but it kept me NED for a few months.
My mets are looking angrier, though I know I’m lucky they haven’t ulcerated yet, my skin’s gone quite itchy in other areas and I can feel things going on internally, plus it’s becoming more painful again so I’m relieved to have reached a point of being well enough to make a start with the new treatment tomorrow. Thanks for the hair tips. It’ll be interesting to see if I keep my hair this time. I’m feeling a bit queezy just at the memory of what happened with Capecitabine. I just hope this one is as easy as I found Gem Carbo.
Marirose, Stresshead, Janice, SS and anyone else I’ve missed, or who just follow the thread - I hope things are improving for you all.
X
Hi all,
Omg : need some advice from my lovely skin mets buddies…
I’m in so much pain : my mets have become so angry painful burning tight etc since I started eribulin on Tuesday… I’m now literally drinking oramorph, popping cocodamal (30mg) dosage… Using loads of Aqueous cream topically together with 6mg of dex (steroid) onc gave me to deal with pain… And nothing is stopping it… It’s just after 2 am and it’s keeping me awake!! (Even with a sleeping tablet) Any advice on how to cope, what to do?? Getting to the edge of my barrier…
Could this be due to mets being broken down, or lack of working!!! . I’m due my next lot of eribulin on Tuesday… Anyone had a similar reaction to eribulin? I know the oncologist will just say wait for the chemo to do its work, got to give it chance etc, but I won’t be able to cope long term with this level of pain!!
Bit of personal good news for me (finally and no c involved) is my eldest boy has passed his 11 +, had no extra tuition and at the time of exam I was every poorly, not long diagnosed with secondary… How strong is he to have dealt with all that and passed! ?? proud mommy… ?
Dbno - how did your infusion go, how you coping???
All the cyber hugs in cyber space to everyone on here ??
One in pain (but proud) Wolfie xxx
Wolfie… First let me pss on congrats to your son…i have said before what a credit your boys are to you. it often makes me wonder where they get their resilience from. My daughter has got through a degree, coming out with a first, a pgce and is now in her first teaching job after securing the first one she went for…i really dont know how she has done it. I’m hoping i can be here for her nqt year…she has so much to cope with i feel so guilty that i have lumbered her with this (even though i know i really havent)
Back to the dreaded C…i so sympthise with you…the pain of these things is horrendous isnt it. I’m at the stage now where i cant even where proper clothes…living in pj tops at home and mens xl t shirts when i go out. All i have been given is the chloraphenicol ointment i mentioned previously. Am not taking any meds yet apart frtom co codamol on day 3/4 of my chemo cycle as i get so much ‘muscle’ pain in my back and neck. Dont really know who to ask about pain relief. I, like you, try to convince myself its the stuff working but deep down i know i’m being an otrich!
Just to keep you all updated…just finished my 1st cycle of taxol (3 treatments) but havent seen any improvement…not sure that they’ve got any worse yet. I saw my onc last week and was as nothing is working there was no point in repeating the biopsies and that this wold just keep spreading. It really hit home then and i’m very scared. I have since been back and told the onc Dr that i want the biopsies doing regardless and he is going to speak with my onc next weeuk. I’m jst very conscious that all this to and fro-ing is wasting time.
I hope all you ladies are faring a bit better than me and Wolfie…love to all.x
Hello ladies
Stresshead - congratulations on your daugher’s achievements. It just shows what a good job you’ve done raising her. I can’t offer you any advice about pain relief but Bumpkin might be able to. I do hope you can get something to control it and I’m keeping everything crossed that the Taxol will work. Regarding the biopsies, I agree, you need to know exactly what you’re dealing with so that treatment can be more targeted. Have you tried getting a second opinion. I’m glad I did. My new onc is far more up to date, knowledgeable and incredibly kind and caring - a complete contrast to my former onc who played God with my life ad would happily have sent me to an early grave…another complaint drated to send to my former hospital. Have you been to The Christie or The Royal Marsden? Also, again, Bumpkin might be able to give a bit of advice.
Wolfie - once again, your son has shown what a good job you’ve done raising him, as with Stresshead and her daughter. It’s a tremendous achievement at the best of times but even more impressive under the circumstances. No wonder you’re proud! I’m a couple of days behind you on the Eribulin and, as with Stresshead, Bumpkin might be able to advise about pain relief. My sking mets have turned very red and angry looking. I accidentally touched it earlier and it was very painful. I’ve had stabbing pains in the locations where I know it’s in my nodes. I’m taking this as a good sign, so I hope you can get back that image of the little blighters causing the stabbing in their final moments.
I managed to feel really well for a whole 24 hours then spent the next 20 hours in hospital. All I can say is, if you get a headache please take some Paracetamol straight away to control it. Unfortunately I have a bad habit of hanging on and hoping it will go of it’s own accord. It worsened and every now and then I felt like my head would explode, I got the chills, my temperature shot up, I developed vertigo and then the worst bout of vomiting I’ve ever had (and I’ve had some pretty bad times on that front). I feel fine now, just a very sore abdomen from lots of wretching and vomiting. I put my parents through a VERY traumatic evening.
To our other thread ladies - I hope you’re doing okay. Hugs (((((()))))) tot all.
Goodnight.
X
I should have stuck to the mets threads but sometimes I dip into the recurrence and triple negative threads. It’s amazing how many people think (or they’re doing the ostrich as well and think it will make it more likely to be true if they put it in writing) that all you need to avoid mets is a positive attitude and lots exercise and veg! If that’s all it took I wouldn’t be in the situation I am now! Grrr.
Oh and had one of those ‘stupid comment of the week moments’ in hospital. While curled in a face down ball on the hospital trolley, wretching violently over a sick bowl (which a male nurse later referred to as my best friend) but unable to bring anything up, a female nurse said to me “… if you keep doing that you’re going to give yourself a sore throat.” !!! Seriously, did she think I was doing it for the fun of it. If I’d been able to talk I would have been inclined to say, “Oh, well I’ll stop it this instant”.
I’m definitely signing off now. Night night.
X