Hi mo
My little boy is still wide awake - little monkey. I suspect that pre school sometimes let him nap during the day.
Marirose - good news if there is some shrinking. How many do you have? My mums got too difficult to count - they didn’t get to ulcerating stage though. -just nodules.
I have an appointment to see her oncology consultant next week - I have a few unanswered questions that I need to ask.
Xxx
Hi Daisy
I have too many mets to count under my left breast down to my abdomen all over my sternum some on my right breast and one on my spine also a possible one on my head but that I have not mentioned to onc.
It is good that you have an appointment with your mothers oncologists it may put you mind at rest let us know how you go on.
I hope you got that little monkey to bed now. Love and (((((hugs))))) xxx
I know that the skin mets are stressful as they’re a constant reminder of what’s happening. My mum was developing new ones every day or two. Mums was clearly v aggressive though. She had three on her head but the rest were very spread around. I panicked about the head ones but then read it’s still skin mets only and has no increased risk of going to the brain. Mums leptomeningeal spread went internally from the spine (not from a skin spinal met).
Hope you all manage to carry on enjoying yourselves as much as possible and put this awful disease to the back of your minds whenever possible.
Xxx
Formymum, welcome to the forum and to our ‘skinny’ thread…love to you and your mum.
Daisy, lovely to hear from you…lovely to think that you havent forgotten us during this awful time for you and your family.
Marierose, said i would let you know about the propylis (bee stuff)…so far havent noticed any improvement anywhere. In fact , this week my skin has completely broken down again…no idea if it has anything to do with the ‘gel’ but district nurse has told me to stop using it in case its a contributory factor. Had a meltdown today as, to go with that, i still have the neck problem. Its scan day on Monday and i am convinced i have menigeal or brain mets or something…so scared. Not sure how i’m going to get through the waiting time.
Janette, Smartie, Tournesol…hope you are painfree and coping as well as possible.
Sending love to you and everyone else on the thread. xx
Hello skinny friends, including family of patients
Sorry I’ve not been posting lately. I’m so busy trying to sort out the house ready to sell. It’s been very physical and tiring work and it’s not done yet but I’m having to do a lot myself as I can’t afford to keep paying others to do it. As usual, my bloods are rubbish on Gem Carbo so I had blood and platelet transfusions again yesterday.
Janice - I’m sorry to hear you’ve reached the point of no more treatment but I do understand. Although I haven’t been posting I think of you and I want to say how much I appreciate the fact that you started this thread. I’ve gained such support and friendship from it and will always be grateful to you for that.
Marirose - it’s good that you were able to have a bit of a dance at the wedding. I hope your mets are in fact shrinking.
Stresshead - sorry you have a new worry and the propylis doesn’t seem to be working. I’ll be thinking of you on Monday and will keep my fingers crossed that it proves to be non cancer related.
formymum - I feel like punching those people with their thoughtless comments on behalf of your mum and you! It’s unfortunate that we have to put up with a lot of insensitive comments but it seems to come with the territory, sadly. I’m glad your mum has you and your dad who care deeply for her and are there to help her.
Daisy - I was sorry to hear about your mum. My thoughts are with you.
Redridinghood - I didn’t realise you have such a young daughter. I can’t imagine how difficult it must be for you.
Hello to those I haven’t mentioned individually. I must go to bed.
I probably won’t post again for a while as I’m under pressure with the jobs at home, in between chemo and things, but I do think of you all on a daily basis.
Love and hugs to all xxxx((()))xxxx
Have’nt posted since I said I was having no more treatment but I haven’t changed my mind and so far am OK.
Stresshead I find anything I put on my mets just seems to make them worse,best left.
Formymum, I am about the same age as your mum and still feel too young for people to say I had a good life. Unlike your mum I have been struggling with cancer for more years than I care to count most of them with a good quality of life. Your mum will deal with it in her own way,just be there but she wouldn’t want you to put your life on hold I know I’ve never wanted my daughter or son to.
Had Macmillan nurse come to see me this week, just to let me know I will have plenty of support when needed.
I am glad I started this thread and overwhelmed it has carried on for so long,really thought I was on my own.
Take care everyone.
Jan
DBNO…great to hear from you. I have PM’d you.x
Janice…glad to hear you are still ok.x
Scan on monday…i know you will all be holding my hand.
Love to all.xx
Hello Jan
It was lovely to hear from you and I am glad you are doing alright. Also thankyou for starting this thread I don’t know how I would have got through my skin mets without the support of the ladies on here. Please keep posting and keep us informed how you are manageing without chemo. We are all here for you:heart:
My new Dr gave me some cream which is an antibiotic cream reading the leaflet it says do not put on broken skin. I ask another Dr if I should avoid it and she agreed so thankfully I left it alone. I don’t put anything on my ulcerated mets I try to keep them dry but I need a dressing on to catch the oozing discharge. I am letting the mets soak in the clear water in the bath again and it seems to be helping but I cannot leave it to the air so I try to wear my dressing gown loosely but sometimes the met bleeds. I think I need to read my past posts to see what I did to get it to heal.
Love and ((((hugs)))) to all skinny friends xxx
Hi Marierose, dont want to sound negative bt my onc told me last wednesday that they never truly heal. Mine were the best they’d been up until last week when they started bleeding & oozing all over. That and this pain in my neck, which is still there after 2 months, led to me having total meltdown as i am convinced the disease in on the rampage again and in a more serious area. Got at least 2 weeks to wait for scan results…i know whats coming i’m just hoping for different. Mt district nurse has tols me not to use anything now except tje urgotul and kerramax so we’ll see how we go. If you do find anything that helps, let me know. x
Daisy how lucky you were to be able to see and speak and also to go back and chat when you need to. I do hope she gave you some answers that you wanted. As Mo put you have been a lovely caring daughter and also you have given us something to think about your Mother was robbed of extra time with you because of this horrible desease. Again as Mo says keep in touch.
Mo you give some wise words I love the idea of the bubble for stresshead I think I will make one of my own. The skin mets are troublesome and now new ones appearing with added mets in other organs is more threatening. So my troubles will go into that bubble and I will enjoy the new life I have found on this new treatment (taxol) although I have little confidence in it so many say it did not work for them. I will keep fingers crossed and wait for the CT scan after approx 8 cycles.
Which brings me to you. You said you are waiting for results have you had a scan or tests.Please let us know
Glad you enjoyed your times with your granddaughter I love it when I see mine. They do help to take your mind off the dreaded 'C
stresshead I am with you with the worry of skin mets I have noticed odd new ones little but there and one on my spine and one on the head. I do hope your neck turns out to be something like a trapped nerve it is a worry not knowing get that bubble that Mo suggests and throw it in there.
Jan I hope you will try the bubble too You are in our hearts.
Love and ((((hugs)))) to DBNO formymum and her mum and anyone reading this thread xxx
Daisy, please dont feel guilty about telling us about leptomeningeal mets. Its on;y through people like you that we are made aware of these things which one day may help to prolong our lives because we know what to look out for. I dont seem to have any symptoms peop;e have mentioned, just this constant ‘pain’ that goes down my neck and round to the base of my skull at the back:painkillers havent helped either.
I’m glad you got some answers about your mum and thank you for your wise words…you too RRH. xx
Love and hugs to everyone on this thread.x
Hi Jan
Yes I am on weekly Taxol but I have not got a port fitted the nurses always like my viens they are so clear and they soon settle back down after the canular. I am only on cycle 4 and I think the onc said I would be scaned after the cycle 6. I feel quite well on this treatment hope it is going to be strong enough to reduce something everything seems to be growing more.
Skin mets the only ones getting holes are the ones that have ulcerated again. They seem to be growing in different areas now. I agree with you the other mets are not on show where as these are a reminder all the time.I always say I am rotting from the inside and the outside.
Well thankyou jan it is always nice to hear from you
Love and ((((hugs)))) to you all xxx
Stresshead - good that you haven’t had other symptoms. If it’s cancer related then maybe it’s only the bone - I know not good but not life threatening like leptomeningeal spread. My mums was so aggressive hat she never stood a chance but I have read that they can inject chemo into the csf for people it would be benefical to so I guess there is a benefit to knowing as early as possible.
Thanks Marirose. The consultant confirmed pretty much what I was thinking but at least now there’s not question marks hanging above it all.
Hope you’re all doing ok xx
Hello Mo
I also love to hear from you and I am so pleased you are stable. I know what you mean when you get coughs or aches and pains or anything different it is something we all have to bare with this debilitating disease.I do hope your old skin mets have gone and the holes go in time I look at mine and see the odd little new ones or is it because they were missed with the ECT I have brown lines and dots from the treatment they look a mess I don’t think they will ever disappear but I am still here so for that I am grateful.
Stresshead what dressings do you have on your ulcers mine are left over from the last ulcers Aquacel Ag foam with silver non adesive I got them on prescription from the nurses. I looked on Amazon to buy some more and found they cost £82 for ten 10cm x 10cm I don’t think I will be paying that. But I have gone back to my clear water baths and I don’t put anything on the ulcer.
Love and ((((hugs)))) to all xxx
Jan, i too have holes in the affected area. My nurse said they have developed becase they weren’t debrided enough at the start (think that means cleaned and the gnk removed)…she says now that it is the scar tisse from that and as long as they are kept clean there is no concern, they ,may even close up.
Thank you all for the pep talks re: my neck…oh how i wish i could get in that bubble…just cant seem to find it.
To be fair, my neck isnt hurting as much. I have been taking painkillers so dont know whether i’m masking the problem: i’m just hoping its like Mo’s friend and nothing too serious. By the way Mo, great news about being stable, thats brilliant.
Marierose, forgive me bt did you ask somewhere about dressings that were costing you a fortune?
I use urgotul which is a silver based dressing and kerramax, both of which you can get on prescription.
Love to all. x
Hi everyone it has been quiet on here lately
How are you all stresshead I meant answer your last post. My ulcerated mets are still weeping and I have to watch the small mets around them. I really should go to the doctors to get some dressings the ones I am using are left over from last time I have not bought any. They are not bleeding like they did before thank goodness. While the marking from the ECT is still dominating most of the area although I can see small new ones coming I also feel as though I have one on my head as well as the one on the back.
Jan how are you I do hope you are ok I think about you often as I do with you all DBNO Redridinghood and also Formymum how is your mother. Sorry if I missed anyone out.
Love and (((hugs))) to you all xxx
Hi ladies, just wanted to let you kmow that my scan results showed i am stable…ish. There is a 3.5mm node on my neck bt as that area hasnt been scaned before they dont know if its new or has always been there, but it certailny wouldnt cause the neck/skull pain i’ve been having. My onc thinks they are unconnected bt offered me an mri to pt my mind at rest. My hsband didnt want me to have it but i have said yes…beginning to think i should have left alone while the news is good though?? he mentioned my groin, which is a new one, but wasnt concerned at all. My latest |TM had aslo gone down from 41 to 31. So, at least we can hopefully have a relatively good christmas. Hope you are all as well as can be expected. xx
Hi Moijan
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
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
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