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metastatic breast cancer with cutaneous mets.

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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

 

 

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Re: metastatic breast cancer with cutaneous mets.

Marirose, So good to hear from you, and that you are doing well on taxol. No difficult ses. I have my fingers crossed that it will work for you........time will tell. I was going to ask when you will have a scan, but you have mentioned that today. After your 6th. Keep warm in your 'bubble' until then! Thank  you for asking about my scan.......I saw the onc on Monday and he said everything is identical to before. I'm happy with stable. I have had a bit of a cough so was worried, but it was ok. A normal cough! Aches & pains that meant nothing before can prey on the mind for us. I thought I had something new on my scar too but he said it was normal old scar tissue, nothing to worry about. Hope he's right!

 

Funny the talk about skin mets and holes.........mine post radio has turned into quite a hole, with 2 little scabs in the middle.....well, at the bottom of the hole! It looks odd, but it has dried up or whatever they do, and I am hoping it stays that way for a long time. The onc saw it and didn't turn a hair. My hole.

 

Stresshead, I bumped into a friend today who is going to see a physio about the pain in the back of her neck. Persistent, for about 6 months. Her GP says it will go eventually, and perhaps come back.......but the thing is that it is good old wear-and-tear apparently. I am hoping that yours is the same! But it needs to be seen to so that you know for sure. It is good in terms of mets that you have no other symptoms except pain.

 

Take care, Marirose. I often wonder how you are getting on and love to see your posts here. Eat well and sleep well, and get out with hub. Hope he's well too. I seem to remember that he has a few problems of his own........arthritis? Knees wasn't it? I loved your description of the wedding reception you went to........dancing the evening away! Little Anna is 5 at the weekend so I am visiting her. She loves her barbies so I have a bag of glamorous dresses for them!

 

Best wishes to everyone and as usual thanks for sharing your experiences and feelings. I may not post often...............big gaps...............but I read every day, checking up on you all!

 

Lots of love to all,       mo              xxxxxxxxxxxxxxx

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Re: metastatic breast cancer with cutaneous mets.

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
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Re: metastatic breast cancer with cutaneous mets.

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

 

 

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Re: metastatic breast cancer with cutaneous mets.

Marirose are you on weekly taxol, I did 6 months before it stopped working. I found it very time consuming as with weekly  chemo it meant weekly blood tests but looking back it wasn't so bad.  Have you had a port fitted? I am waiting to have mine taken out.

 

Anyone find their skin mets sometimes turn into holes, it's like being eaten away which I suppose is whats happening. I know my liver mets are more serious but I can't see them.  When I had my last scan they couldn't put the contrast through as no vain could be found, it's all those weekly blood tests messing them up.

 

Even though I only had one infusion of Eribulin I still have lost loads of hair thought  I might have got away with that, I cold capped through Paclitaxel and kept most of it but was told that it didn't work with Eribulin and the infusion only took 10 minutes so wasn't worth trying.

 

Hope every one is as well as the can be.

 

Take care.

 

Jan

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

Daisy, Just to say hello, and thank you for all your wise words. You have had to learn a lot through your dear mum's illness and it is good of you to share your thoughts. Wasn't your mum's breast cancer so strange and unusual.........so aggressive. She was overwhelmed. It took us all by surprise. But you did the right thing to discuss it with the onc. You do need to be clear about what happened. And so kind of you to think of giving the time she didn't have to others who might need it. A generous gift. She was unlucky with her cancer, but so lucky to have you. Anyway, I didn't mean to ramble, but wanted to say hello, and take care. Still thinking of you.

 

Love and best wishes to everyone on here.........

 

stresshead, Daisy is right. Somehow you have to wait and see. Try to make a special space, a sort of bubble,  to live in while you wait for results...........try to blank it out, although I do know how hard it is waiting for results. I've been doing it myself for the last few weeks. But all could be well, and all could be well,

 

mo                     xxxxxxxxxxx

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Re: metastatic breast cancer with cutaneous mets.

Hi all

 

Stresshead - I'm sorry you are worrying so much about leptomingeal spread - I feel a little responsible for putting that extra worry on you by telling you about my mum etc. It really may not be that. Do you have any other symptoms - vague headache that never really clears (although could be stress also), leg weakness, foot numbness? If you can, try not to assume it's anything until you know - otherwise you're using days worrying when you could be enjoying - as far as that is possible for you.

 

I had an appt with mums oncologist today. She was very nice. I asked about how they can be sure it is breast cancer in the skin seeing as it lost it's receptors, confirmed that her symptoms at the end were infact the spread and not peripheral neuropathy, discussed it's agressiveness - she told me that she had not even seen a burden of cancer like my mums on the CT scan. I know the largest tumour on there was 5mm but there were many nodules in lung, kidney, skin and adrenal - must have been so many for her to say that. She said she had no idea why it became so aggressive. I told her that they said 12-18 months and that mum only had 6 weeks - therefore I hope some other woman gets that time that my mum never and goes way beyond that 18 months. 

She told me to get in touch should I have any other questions. I did cry a bit - it was a little overwhelming being in the clinic without my mum as in all the previous times, and talking about her rapid deterioration. Again though, like the funeral speech, it was something I needed to do.

 

Hope youre all having quality time in whatever you are doing and are not stressing too much. I know that sounds a bit silly - but it's just that stressing until the end, even if thats years away, is not making the most of time. But again, easier said than done, I know. 

 

lots of love

xxx

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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 youHeart 

 

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

 

 

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Re: metastatic breast cancer with cutaneous mets.

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

 

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

dbno, Thank you for including me in your list of replies and comments! You are a good and thorough reader! I read this thread at least every day as it is so supportive and always intersting and sharing. I am replying here really to say that my little Anna is my grandaughter! But she is my life at the moment although I don't see her very often. That reminds me that I must write her a letter...........I prefer paper letters coming through her door rather than emails. She loves to get them, open them up. Anyway, she gives me my reason now.

 

Take care all skinnies. Love to you all......and good luck selling your house, dbno, but do be careful wih all the work,

 

mo              xxxxxx

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

Daisy, Hugs to the little monkey!

 

mo           x

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Re: metastatic breast cancer with cutaneous mets.

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
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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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
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Re: metastatic breast cancer with cutaneous mets.

Hi formymum welcome to our lovely thread

I wanted to reply to your post but I have had my chemo treatment today and we have been out for dinner so I did not get chance to read much.

Tell your mum she is living with cancer not dying from it there are a few ladies reaching the age of 70 and still going strong. She must get out and ignore silly remarks they are insensitive to the real issues of cancer.

 

I went to a wedding reception Saturday and as I have MS and cancer in both legs I have difficulty walking but the sound of the music and lots of old workmates I really felt like dancing so I got up and started to dance having well meaning friends who wanted to help me to walk I asked them to give me chance to do it myself and I danced to 3 different songs I felt great but knew when I had enough. I think the steriods I am having are giving me more life.

 

My skin mets are strange I have an ulcerated patch on my old ulcerated scar that healed and another tiny met that started to bleed next to it. But I feel some of the mets seem to be shrinking. I hope it isn't wishfull thinking I would like them all to disappear but there is too many for that.

 

Daisy I am glad you are still popping in to see us and I hope you are all getting comfort from your memories.Heart

 

Love to all our skinny friends and (((((hugs)))))  xxx

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Re: metastatic breast cancer with cutaneous mets.

Daisy, You are right......this thread has been quiet lately, but I do check it every day.......just in case! i hope you are coping ok. I hope  your little one is tucked up and happy this evening. My little Anna will be 5 on the 15th. Growing up. It was good to hear from you and that you are still checking  the threads. Take care,

 

mo

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Re: metastatic breast cancer with cutaneous mets.

formymum, So sorry to hear about your mum, but it is good to know that you are so close. I understand what you said about people's comments. i lost my little mum last year aged 98 and people always say 'she had a good innings' etc. But i loved her and miss her, no matter what her age. Daisy who was on this thread keeping us updated about her mum would also understand. You love her and she's your mum. You haven't said anything specific about her situation, but i hope she had a good day today, and more to come.

 

You are welcome here on these threads to say whatever you like, and perhaps to pick up something useful. And thank you for saying that we can sound off as well! We all need to at times. It's natural. There are some lovely ladies here who will be thinking of you both.

 

mo                x

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Re: metastatic breast cancer with cutaneous mets.

Hi fornymum

I got your message today and will reply as soon as my little one is asleep. I conversed with many lovely ladies on here - mostly those going through what our mums have been through. I still check in on the forum as i don't feel like I can let it go just because my mum has now sadly gone.

Hi all - hope you are all doing ok as possible.its been a while since any of you posted on here

Xx
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Re: metastatic breast cancer with cutaneous mets.

Hi,

I've just been reading your post on here and it really rang true with me and hope you don;t mind me replying to you and getting in touch.

I'm not a sufferer myslef but my mum is and I am going through all the emotions with her day by day.. it's a proper rollercoaster!

How are you doing at the moment? Hope you're in a good period of time 🙂

 

My mum is almost 70 and until this dreadful diagnosis she and my dad were very active, always on holiday, volunteering etc.. now she barel leaves the house, it's horrible to see.

The number of people who say ' well, she's lived a good life' and ' well it happens to us all'.. it makes me want to scream out loud or smack them, or both!

I feel like although my mum is still here this horrible disease has already robbed her of 18 months of life and it's soul destroying to watch happen to someone you love so much.

Thanks for listening.. it does help to sound off soemtimes as I'm sure you know.

I'm here to listen if anyone feels like doing the same.

sending positive thoughts and love xx

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Re: metastatic breast cancer with cutaneous mets.

These new creams sound interesting do let me know how you go on stresshead I would be interested to see if it works. Frankincence sounds good another one to watch.

 

I see my MS nurse tomorrow I will see what she says to the weed as MS sufferers use it in spray form so I will let you know Moijan.

 

Tournesol I hope you are still ok from your visitors yesterday. Smartie and Janice I hope you are also ok and I am sending you all loads of HeartHeartHeartHeartHeartHeartetc etc etc

 

To all my other skinny friends Love and (((hugs)))

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Re: metastatic breast cancer with cutaneous mets.

Hi Stresshead, yes, there is some news around re franknsence taken orally, but so far, ive been unable to rource it...apparently ts good for lots of things? Also have tried to source m*r*jua*a, which we arent alowed to discuss, but join the dots...

i heard these two are available online but am wary in case they arent pure...

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Re: metastatic breast cancer with cutaneous mets.

Frankincense - not cancer related but my husband suffers from folloculitis of the scalp. I got him this from Holland and Barrett's (and put in the carrier oil) and it cleared his condition up as well as the antibiotics he was given months previously. I am a microbiologist by the way (I work with bacteria) and I was impressed by how it worked so it is definitely worth a try xx
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Re: metastatic breast cancer with cutaneous mets.

Marierose, sorry to hear about your skin breaking down...i too have resigned myself to having to live with ulcers, dressings etc for the duration. Still, if i'm living i dont care. I went for reflexology the other day and was talking to my therapist about different things like essential oils and honey , She gave me a sample of something called propilis(???)..which is what bees produce to protect their hives from dirt and bacteria. I have started to use it on one area so i;ll let you know how i get on. She also mentioned frankincense but has to be medical grade as is it taken orally, which i had never heard of. I will look into it and let you know if i get anywhere.

Lotgs of love to you, smartie, tournesol, janice and everyone else on here. xx

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Re: metastatic breast cancer with cutaneous mets.

Daisy it was so nice to hear about your Mum's funeral you certainly are a credit to your Mother she will be looking down on you and will be so proud.Heart

 

Hi to everyone else I am having trouble with my skin mets one has broke down and is weeping again. I have tried to avoid this happening but I need to go back to my dressings. I don't think I will be normal ever again in that area.

I started my new chemo yesterday and was amazed I had no pain in the night but spent most of the night awake with stupid things on my mind. I did feel I was going to be sick but the tablet helped that I think it was caused by lack of sleep. Then this morning I woke with a red face which seemed funny as my skin has been so pale of late.

 

Janice I am thinking about you and hope you are ok I send you my love do keep us informed how you are getting on.

 

Tournesol you say you have been in the hospice 7 weeks do you get chance to go outside for fresh air. You are in my thoughts too and I send you my love

 

So are you Smartie you are in my thoughts too my love goes out to you too

 

Love to all my skinny friends ((((hugs))))  xxx 

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Re: metastatic breast cancer with cutaneous mets.

Daisy, Thank you for telling us about your mum's funeral. You have been so brave all along, and dipped your little mother in love. i do hope you drop by here sometimes, and let us know how you are and even share any relevant news you might pick up about treatments. Sometimes we are too deep in it all to notice! And with your first hand knowledge you could be of real use now to yourself in the future, or to your friends. Breast cancer is not uncommon unfortunately.

 

Keep your dear mum close to your heart where she will always be with you. I talk to my mum and dad every day!

 

mo                 x

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Re: metastatic breast cancer with cutaneous mets.

Daisy. it was lovely to hear from you. How brave of you to speak at your mums funeral...i dont know how you did it but she must have been so proud of you. Look forward to hearing from you soon. x

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Re: metastatic breast cancer with cutaneous mets.

Just wanted to let you know that I'm still checking in and reading. Mums funeral was yesterday. I managed to get up and give a little speech about my life with her, our latest memories and the final conversations we had. I wanted to tell everyone that she wanted to live on in people's minds and memories.

I still care and feel for what you are all going through and is why I am still going to check in and read. You are all wonderful and strong, regardless of whether you decide to carry on fighting, or decide to stop putting yourself through the treatment. Both decisions take bravery. Xx
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Re: metastatic breast cancer with cutaneous mets.

Janice, just wanted to echo what all the others have said. I understand about having chemo upon chemo to end up back at square one. You are as brave (if not braver) in making your decision as carrying on fighting when you know its a battle you cant win.  I remember a few months ago when i was really ill with pleral ffusions etc, my daughter said something like 'how do you do it?' and i replied 'i do it for you and dad' She said 'i know why you do it i dont know how you do it'.  i suppose there comes a time when you just know yoou cant do it anymore, even for others. I'm sure, like Smartie and Toirnesol you will find peace and comfort and be able to enjoy your time rather than be tied to medication and hospitals. My thoughts are with you, especially as i believe it was you who started this thread. We are all endebted to you. Sending love and best wishes to all. xx

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Re: metastatic breast cancer with cutaneous mets.

Hi Janice, I totally understand. I often think about what it will be like to get to that point. It sounds as if you have made a wise decision and right for you at this time. I also endorse what has been said about hospices. i went in to see our local hospice last Friday to drop in a couple of cheques and to have a look around.

 

the staff were absolutely lovely.  There seems to be a revolving door these days in hospices, with outreach nurses going to help people stay at hme as long as they can/wish. I was impressed with the facilites I saw and I have heard several times from other people that they are' the  tops' at pain management and sorting out medications.

thinking of you, please let us know how things are going...if you feel like it.

 

Smartie, lovely to hear from you tooxxx

 

love and hugs

Moijanx

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Re: metastatic breast cancer with cutaneous mets.

Dear Janice

As the other lovely ladies have already said it is your decision and I'm sure as and when the time comes we will all do what is best for us. Smartie, who already has made the decision for no more treatment, has shown us all how this can be absolutely right when your body has had to put up with so much. It must be so much better to spend time with family and loved ones rather than being in and out of hospitals having things stuck in us and infused into us. You have both shown us the courage that this disease gives us to make our own choices and you should be proud that you are taking control of how you want to live with it. Sending you, and all SBC ladies, lots of hugs, support and quality time. I will be thinking of you (and Smartie and Tournesol and everyone else having such a tough time) everyday.

Take care

Nicky x

ps Daisy - you and your Mum are of course included in this sentiment and you have every right to add yours and your Mums experience, it is good (if that is ever the right word) to hear it from the other side of the treatment roller coaster. You take care as well, as ever you and your Mum are in my thoughts.

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Re: metastatic breast cancer with cutaneous mets.

Hi all

It's maybe not my place to input here but I just wanted to share my feelings as a member of the family experiencing it.

My mum want to fight - but it was only her first fight with chemo for secondary spread and she had had such a bad experience with her first treatment.

I am devastated to lose my mum. But I also see all of your fights and I was so worried for my mum as I felt she was going to fight for us (me and my sister).I have a sense of relief that she isn't going through that. However I admire your fight - and I'd do the same. But...having chemo to end in the same place must be beyond disheartening and I can see why so many of you decide not to fight.

You have to go with what your heart tells you and your family should understand.
Xx

Xxx
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Re: metastatic breast cancer with cutaneous mets.

Thank you all

I have given you all a hug because I think you all deserve it I can hear you all speaking from the heart sometimes the reality of this disease needs to be heard.

 

Janice please keep us informed like Smartie you have been with us some time and we do want to help you with your decision and be here for you both.((((((hugs)))))) Heart

 

To all my skinny friends ((((hugs))))  xxx 

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Re: metastatic breast cancer with cutaneous mets.

Hi I cant help but agree with you all.Thi is my fourth chemo and the last few months have been a nightmare in and out hospital for drains .six.doses of docetaxol not easy .three months later stomach draining and on erubulin I think I will wait till iv had 3 treatments which is six injections
I have felt bad lately no quality except for family..I have already been going to our hospice as an out patient.get great help and advice.when and if my time comes I want to be ay home for as Long as I can then hospice .
I m at quite a low point
I have discussed it with hubby he sort of agrees with me.usually he doesn't want to talk emotional.
Really what I'm saying is I understand when people have enough..xxsharon
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Re: metastatic breast cancer with cutaneous mets.

Janice, I know what a difficult decision it is to decide on no more treatment but I am glad you (like me) are at ease with it. It would have been my 6th chemo and I think my body too was saying enough is enough. I hope you can enjoy some quality time now with your family and friends. I have spent the last month enjoying a few treats and weekends away at my sisters etc.

For those of you debating hospices I would have no hesitation in recommending them from my experience. They are specialists in their field and offer all sorts of support, mental and physical, and to the close family as well as to you yourself. 

Hoping you are all as well as you can be.

Smartie X 

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Re: metastatic breast cancer with cutaneous mets.

Hello Janice.
When I read your post I was tempted to " read and run" as I'm gatecrashing here anyway but I don't have any experience or knowledge but all I do know is like smartie you have made a very big decision to enjoy some quality of life without all the toxic invasion. The body is a wonderful thing but it can only take so much medical invasion and I'm sure when my time comes I would probably make the same sort of choice ...
All I can do is send loads of hugs
Carolyn xx😢
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Re: metastatic breast cancer with cutaneous mets.

First of all Daisy so sorry to hear about your mum, I'm not as good as some putting things into words but my thoughts have been with you.

 

Well I have decided no more treatment,had one Eribulin just over a week ago and  had a terrible reaction frightened my husband. I was OK for a few days after, think it must have been the steroids keeping me going, then I just collapsed one day apparently my eyes were open but I wasn't there, after that I felt so ill for the rest of the week.  This would have been my 7th chemo and I feel it's my body telling me no more, Saw my oncologist Tuesday and she agrees with my decision,every time I have chemo it works for a while and then I am back to square one and I have had enough. I did weekly Paclitaxel for 6 months, for what,to be exactly back  where I started.

 

I am comfortable with my decision and have been assured that I will get plenty of support when I need it.

 

Take care.

 

Jan

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Re: metastatic breast cancer with cutaneous mets.

RRH, lovely to hear from you. I too am due a scan in October and already dreading it...well not 'it' but the results..i will have been off chemo for 3 months so who knows what it will throw up. It must be really tough on you coping with this alone at home but at least you dont have to put a brave face on all the time and you can have a good cry when you want rather than bottling things p to protect others. I think its a really good idea to visit a hospice. I was terrified whrn my macmillan nurse suggested i saw a doctor there but i'm glad i did. Please let us know how you get on. xx

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Re: metastatic breast cancer with cutaneous mets.

Just saying that there is so much to read from so many who are sharing and writing........I am reading and rereading.

Thank you Daisy for everything you have reported. You really had your feelers out for your mum, but you weren't helped by the medical teams who sounded confused.Youa re right to still be asking questions. You deserve to know, and everything you learn could be useful for you or friends in the future. I think of you every day at the moment. Your mum's progressions was a real shock.

Marirose I hope you are feeling better and more positive. I sent you a couple of PMs and hope you got them, but don't worry about it! I don't need a reply. Waiting for scans etc is the hardest part of all this at times. I didn't mind at first but now it's nearly 2 years I keep feeling it can't go on.........my next scan is in Oct and it is on my mind. But I'm glad you are having a thorough investigation. If there is nothing amiss you will feel much better. and I too am thinking seriously about hospices. I thought I might contact the ones nearest to me........none very near.....and ask to visit. Contact. I live alone and worry about when it all gets too much for me. i think they allow visits, and perhaps have open days.

Stresshead I am so pleased that  you like your new onc and have faith in him. It is so important to know they are not only knowledgeable, but thorough and go the extra mile. Do the best for you. Not just a working relationship, but one human caring for another.

Tournesol, I hope you are feeling well and well cared for. The Hospice Movement is such a good thing.........thank you for drawing our attention to it so we can think about it for ourselves. I am certainly visiting some this autumn. I'll report back!

Well, back to rereading the posts again! There is so much to learn, and I love the way everyone here gives such good support. Thinking of you all tonight,

 

mo                xxxxxxxxxxxxxxxx

 

 

 

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Re: metastatic breast cancer with cutaneous mets.

Marierose, so glad to hear yo are now more positive about things. I too am really pleased with my new onc. I know he cant work miracles but i certainly have faith in him.

Daisy, my thoughts will be with yo on monday.

Tornesol, glad to hear you are keeping as well as possible. Sending you good vibes.

Love to all 'skinnies'. xx

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Re: metastatic breast cancer with cutaneous mets.

Dear Daisy thank you so much for your message as I shall be having a MRI scan hopefully with a brain scan as well as the spine. You have highlighted a subject we have not touched on we had a lady who we were very fond off who died earlier this year her husband warned us about headaches.

 

I would also pleased to read about the hospice I must admit since seeing my dear friend who dx same time as myself is sadly dieing with her lovely family and partner caring for her. It made me start to think about my own situation my husband could not look after me in the same way as my sons live far away.I have been giving the hospice alot of thought so I value your comments. 

 

All the best for Monday when you and your family say goodbye to your Mother Heart

 

Tournesol your stay in the hospice is also valued. Cyber ((((((((hugs))))))))  Heart

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Re: metastatic breast cancer with cutaneous mets.

Thanks all. I am pleased it has raised awareness a little - somethings are just not mentioned to us and even the Drs do not realise what it is at first. I've read it's not that rare too.
I have a few questions still for mums oncologist - she tried to call be yesterday but I didn't make the call in time.

Stresshead - make sure if they investigate your skull/spine, they do it with an MRI - mums ct scan didn't pick it up, the MRI showed what they thought was spread to the bone in the spine and only further investigation - I think bone scan and a contrast MRI showed it to be leptomeningeal.
Mums biggest symptoms where the horrific leg and lower back pains, numbness in legs - started like neuropathy, then the confusion was deja vu at first. Mum kept thinking what was happening had already happened. She was aware that she was confused though. Then there were random comments and thinking thighs had happened that hadn't. There was normal conversations too though inter spaces between the confusion. Mum also had a vague headache all along - before her CT scan. I did mention it on here as mum never used to get headaches. Even in hospital mum said it was still there in the background all the time, despite the painkillers. I think she had it throughout the past few weeks.
Mums funeral is on Monday. Moijan - I hope mum is out there somewhere but who knows.
Tournesol - hope you are settled in the hospice. Mums was such a relaxing atmosphere - everyone was like a counsellor and I found myself pouring my thoughts out to all of them - even the Drs. They treated mum with so much respect - so different t from the hospital - that place makes me shudder.
Another word of advice - make your wishes clear to your family that you'd like to go in the hospice if that's what you'd want. My mum only just made it in there. On the Tuesday the hospital told me the leptomeningeal news - said average is 6 weeks but stressed it was only an average and told me that mums oncologist would come and see me with the actual prognosis. I popped home to get a few nights belongings as they said I could sleep over. I missed the oncologist. They asked if mum wanted home care, hospice it stay in hospital. I knew mum had tried to get her dad in a hospice years ago so I knew she'd prefer that and I told them that- also what I had read on here about the advantages of the hospices helped me choose that. on Wednesday night they said she wasn't going to make the ambulance run to the hospice as it finished at 8pm (had to be at hospice for 8)and theyd been busy. They said she'd go the next morning to the hospice. Then all of a sudden they turned up just before 8 and took her. When we got there they told us if they had left it until thurs morning she may have been too ill to move and that they'd bent the rules as they knew it's was mums wish. I was so relieved I'd told them that. I was also shocked as nobody at the hospital had told me that mum was that close. They told me to take it half a day at a time at the hospice. I only just got my sister home from Canada in time.

I will stop telling you about mum now - I acknowledge that it may be hard to hear. I just want to share in the hope it helps - symptoms, hospice wishes etc. This site helped me realise that the hospice was best for mum and I am greatful for that as it made the end of mums life be as stress free and dignified as possible for her.
Xxxx