Hi Marirose,
I think Mo is absolutely right and she set it out so nicely. The only thing I might add, is that often during this cancer journey, we are put in a position where we feel pressured to make a quick decision! From your discussion it seems that you could quite legitimatly ask for time to make up your mind., why not take a bit longer to think things over. God bless
Moijan
Dear Mo and Moijan
Thankyou for your replies Moijan you are right Mo gives such caring advice as so do you. I am doing alot of thinking but I will not let it rule me. If I get the chance to ring the BN I will do as she was interested in my ECT and skin mets. She wanted me to give her some feed back on BCC’s resource pack as she is wanting to become a SCBN so I can discuss that and my present situation.
The CT scan is tonight and my husband said it is stressful wondering what it will show so he feels it too. But at least I don’t have to wait long for the results so thats a plus Wednesday is not far away.
Take care all skinny friends Love and ((((hugs)))) xxx
Hi Marirose, you, also give very valuable advice and I enjoy reading your posts.p
Its easier sometimes to see from a distance for other people than for ourselves, isnt it?
My own fears are currently around having to have a port o cath put in! I wont specify what they are, as I dont want to frighten other people…I have been considering it for a while now( know I wouldnt want a picc or hickman etc) and so every i/v is another experience.
Today it took 6 goes, sometimes only one, but im now booked to speak to the n spec about suitability. I hate being invaded!
Re ensuring we have time to think…I find it takes me a while…Im not happy to make on the spot decisions. So I totally understand your dillemna. And lets face it, once we make our decision thats that, so its good to take a bit of breathing space( I find) best wishes for the scan…thinking of you
Moijanxx
Hello skinny friends
Sorry I’ve not been posting for a while. I’ve only trawled through a few posts so I’m not entirely up to date with everything.
Marirose - I’m so sorry that you have such a hard decision to make and that it’s getting you down. You really shouldn’t feel that you’re in any way letting the side down. You’re so supportive of everyone else; you should share your feelings and let others support you. I shall be keeping my fingers crossed that your CT scan results are good. I agree that it’s too big a decision to rush and you need time to consider all the pros and cons. I’m desperatey racking my chemo brain to try to remember who it was who had skin mets surgically removed years ago and they never came back…I’ll work on remembering that.
I shall try to spend a bit of time catching up with how everyone else is doing on our thread and will then post again but I must get to sleep now.
Sleep well other skinnies and lots of belated hugs from me ((((((((()))))))))
X
Daisy,
Cant really remember what happened with my mets throughout all the different chemo’s i’ve had except that they got worse!! i have had things ranging from spots to lumps to red rash which basically kept spreading, hence moving from chemo to chemo. I think the ect probably got them under some sort of control apart from my cancer site (right breast) helped b ymy last chemo (carboplatin). my onc has stopped my chemo now so we will see what happens…i’m very scared.
Marierose, think i misunderstood your dilemma on the pm site…i didnt realise you had the option of surgery/skin grafts…i didnt know that was an option. I know when my first lump turned into a rash i was told removal by srgwry wasnt an option so now i am covered with them it is definitely ot of the question. i would be interested to learn more though. As the others have said, you are the one who helps and supports everyone else but you should always remember that you are entitled to be ‘down’ and in need of support and we all want to help if we can.
Sending you all masses of hugs.xx
Hi all
I know it’s not me going through what you all are but thought I’d add to the comments about being strong. I’m not sure it’s good to be strong all the time - especially when not feeling it. I agree being positive as much as you can is the way forward, but giving the sad situation you are all in, it’s only natural to worry, some times more than others. My mum and I hav discussed having to be positive but we’ve also discussed letting each other know our fears too (obviously mine are losing her). I feel it would be unrealistic to not voice them to each other, and if she pretended to be strong all of the time I would know that underneath she cannot be really, so I would worry more about what she was keeping in. At least when you let it out, you can help each other deal with it. I’d hate to think my mum was sad but felt she couldn’t show it. Therefore what I am trying to say is that it’s more than understandable to be down, and not a bad thing letting others know. You have enough battles without dealing with it alone.
My mums chemo isn’t going too well. After 1 session she has peripheral neuropathy - we were at hospital on Wednesday. We saw the on call dr. He was of the opinion it may be the taxol (she is having taxol and carboplatin) as its a taxane and she had a taxane at primary diagnosis ( fec-t ) so may be effecting her quicker (last time barely any neuropathy - just a little in her hip, this time pins and needles in feet and shooting pains and aches all over). As she can still feel her feet he was happy to for her to proceed this week. She wants to see her oncologist next week. She is worried that she has permanent nerve damage if she continues and won’t be able to drive. I think we are going to discuss if they can reduce dose/give an alternative to the taxol - I read something about giving in as a different compound. Or even a different drug. I know it will probably shorten her prognosis, but she realises that the extra few months it gives her may just be too much if she is in too much pain (struggling with the stabbing pains I think).
Thanks for sharing your skin met experiences.
Hope you all have a nice weekend.
Xxxx
Hello to my lovely skinny friends
Thankyou for your posts you always give me more strength
Daisy your input is just as valued as you have seen we all help one another. I do hope your Mother is feeling well and it is good she has a daugher like you by her
I go to a cancer support group and the Lady who started it is a retired nurse who has done research concerning cancer mainly mx’s she had cancer in 1994 she is really helpful and although I am the only secondary she does know quite alot. She also has other issues with her breast. We had a chat about my situation her feelings were have the surgery if it gets rid of the mets and she showed me a skin graft that she had on her breast.
I still want to keep my options open until I get the results and find out who will be my temporary onc. What annoys me is the fact that all this could have been under discussion when I first got my skin mets 2 years ago but I will not be swept under the carpet again. My biggest concern is the cancer on my ribs this will now effect things if it is any worse.
While I still need to search for more information and chat with knowledgeable people I am determined to not let them fob me off. I am finding my inner strength.
Again thankyou for being here for me I love you all
(((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))))
Hello all,
Haven’t posted for a while but have been reading yours.
I have been on a chemo break,finished weekly taxol end of May when it appeared to stop working. My Mets have got a lot worse since then, I still feel it was working but maybe not as well as at the beginning. Had scan almost 3 weeks ago and when I went for my hospital appointment with oncologist last Tuesday expecting results they had’nt got them, that was after an hour’s nervous wait,always running late, so back next week. I am not expecting good news if my Mets are anything to go by and no doubt more chemo will be on the cards.
Does anyone ever think they have had enough, I am feeling that at the moment after 5 years of various chemos only to be back to square one at the end of each one.
To top it all had to have mum sectioned last week,she has dimensia and dad can’t cope both 92, so trip to different hospital every other day to visit. If I do have more chemo don’t know how I will fit it all in especially if I feel ill,not that I feel great now.
Feel really jealous sometimes of people getting on with normal lives,they don’t realise how lucky the are.
Take care.
Jan
Hello Jan
How lovely to hear from you I was thinking about you yesterday and wondered how your chemo rest was going. Sorry you have had progression with the mets even with ECT the surgeon said they would still come back. We seem to be an elite club with skin mets. I do hope they go again with next chemo.
Nicky you are most welcome we love comments and advice. Belinda used to post on here and she had no skin mets but she enjoyed the constructive conversations and we enjoyed her comments. I am only too pleased that others will read this thread because we would not wish these mets on anyone and if they get unexplained rashes or any skin eruptions maybe this thread will help. I am on a FB SBC and wanted to know if there were any more ladies with skin mets but only one answered and she adviced me to come onto this site and said it was a really good site for information. I pm’d her and admitted I was already on it and she worked out who I was. So it shows how constructive these medical Boards can be to people who are not sure about joining us. I remember reading your posts long before I decided to join you all so you are not butting in.
Love and ((((((hugs)))))) to you all xxx
Hi Janice, so sorry you are feeling rough…
Sorry to hear about your mum too, you must be so worried about both of thrm.
i got the tshirt for occasional despondency. This illness is a long haul.
Yes, too, re other people who are getting on with thrir lives…so much on the same page with you there…
my friends are all great, but if I have a despondent day, I get " well, we are all going to die one day’ or we could all get run over by a bus at any time’ I dont find that helpful as they havent been given the heads up we have, i dont think they undestand. Tho, ms patients and other people with severe illness carry similar burdens.
Often many of them arent attending say 4 or 5 different types of hospitals or out patients. They can nip off out the country or other without thinking…oh I need to get a prescription or a drs letter or find ways to store my medication! As for getting fed up with treatments, yes, on that page too. Its an intrusion, however grateful we are for the drugs.
Hope things improve soon for you,
lMoijanx???
Daisy, thank you for your posts.I’m sorry to hear that your mum is suffering bt hopefully it will be a one-off after her first treatment. Your words about sharing feelings really struck a chord. I have a daughter and i think she feels exactly the same as you but we dont really come out and say it. I try to always be strong and up beat for her and she does the same and this in itself is very wearing. My husband has health issues and isnt coping well with my situation…he has refused all help of counselling until now as he says’talking wont change anything so whats the point’…my daughter also thinks that way.It breaks my heart, as it does everyones, to think we are hurting our families but as you say, hiding it isnt always the best thing.
I once saw an inspirational saying…‘‘Crying isnt a sign of weakness, its a sign that you have been strong for too long’’…maybe we all need to remeber that more often.
Janice, sorry to hear yoy mets are getting worse on your chemo break, I have just started on a break (last friday would have been my chemo break) and already my mets are weeping and bleeding more…just dont know what the answer is.
I have never really thought of giving up/stopping treatment yet but i totally understand how you feel. Please dont make any rash decisions (no pun intended) , i know you can go on fighting.
Sending much love to all who post on here…‘skinny’ or not. xx
I know it’s difficult. Talking doesn’t change the physical process, but I personally feel it can help the mental process. Everyone is different though. We have been discussed funeral songs etc.
Took my mum to hospital today. They wanted to see her as she can now barely walk after only 2 sessions in taxol/paclitaxel. Not even had the 1st full cycle. Her feet/legs have pins and needles and she keeps stumbling/buckling. I had to take her in a wheelchair. Typically her oncologist is on holiday - why does t always happen at times like this. We saw a registrar - seriously looked about 18 (of course I know he must be older). He had to check with other oncologist about what to do next. No chemo for two weeks to see if feelings return. Then she will see her oncologist again and see what options she has. This time they said it’s likely to be the paclitaxel. She has been given a ‘painkiller’ to help with the stabbing nerve pains and they said will help her sleep. I say ‘painkiller’ as when I read the leaflet it’s actually an antidepressant. I have brought her back to mine - set a mini fridge and kettle up in the bedroom for her.
Not sure where we go from here. I saw the screen when the reg left the room. Said triple neg BC which was behaving aggressively and should be treated as such. Said unusual behaviour of spread - numerous cutaneous mets, adrenal, bilateral renal and to the lungs. Nothing they haven’t told us. But now it seems the aggressive treatment is not for mum. Maybe cape next?
They don’t know if she will get the feelings in feet/legs back.
Hoping this painkiller works for her. We are going to centre parcs next week and she still wants to come so we can all spend time together.
Hope you are all doing well.
Xxxx
Hello everyone
Daisy I do hope your Mother is doing ok.
stresshead I understand how you mean about staying strong for those that are close to us. I have 2 sons both married with 3 children each. One family daughter inlaw will talk when she feels like it but son doesn’t say much the other son will talk about it as long as daughter inlaw is not there she is a hypochondriac and we must not talk medical with her. My sister never asks and when she does I have to listen to her medical history. My brother is concerned but he has health issues and we are taking bets on who will be first to go but trying to get as much out of life as we can. 2 more brothers I don’t hear from although one gets annoyed if he gets news second hand then compares me with his late wife who died of lung cancer and there is my hubby who thinks I will out live him.
Anyway my scan results read the scanexiety thread I can’t go through it all again.
Love to all my friends ((((hugs)))) xxx
Hi Helen
Yes we told the ref - is the reason we went in as it’s also affecting nerves in bladder. Problem is that my mum is already struggling to walk due to only two sessions - said she cannot feel her feet hardly. Did yours come on that fast?
I did think about reducing the dose but mum is petrified that she will not recover to walk again if she carries on, and as her prognosis was 12-18 months she doesn’t want to spend that in a wheelchair. Even now all she can do is lay in bed as she feels in that much pain.
I guess maybe the oncologist will suggest reduced dose, although today they were keen to take her off it for now.
My mum is 65, but had not walking issues up until starting this.
Pleased to hear that yours is manageable.
Fingers cross the anti depressant works too.
Xxx
Hi Daisy and Helen,
just wanted to say that I had peripheral neuropsthy with Taxotere in 2001/2, and my feet are still quite numb in an odd kind of way! I can still drive and actually the pn doesnt really hamper me now, have got used to it.
Daisy, sorry your mum is finding the chemo hard…so very difficult for you to watch and join her as she goes through this, as well, but sounds as if you are a great daughter to her. How comforted she must feel, tucked up in a room in your home. And how very loved xxx
much love to you,
Moijanxx
Hello all
My scan results show progression in liver so starting yet another chemo next Wednesday eribulin,not really surprised just had a nearly 3 month break. Think this is my last option not that that surprises me either. Needless to say not looking forward to it.
Daisy you and your mother must be very close, my daughter had cancer a few years ago so I know what it’s like to see someone you love suffer. I had 24 weekly taxol treatments and I did suffer with my fingers and toes but it wasn’t debilitating.
I find it hard to comment on everyone’s post its a shame you can’t read them all while posting, so I hope you are coping as well as you can.
Take care.
Jan
Hiya Janice.
You are not alone on eribulin …there’s Sharon, Helen and Moijan …so you will be able to swap se and advice here which will make you feel well supported .
Carolyn xx
Dear Mo
Thankyou for your concern without you all I really would be lost which shows how this forum benefits us all. I needed to express my frustration and it did help to write it all down. I regreted not going to see my friend who is in the same hospital and is quite poorly although her partner did say she is sleeping most of the time she has Neutropenia Sepsis I don’t know if her chemo has brought it on. She was with the same onc as me but her treatment was abysmal and I suggested to her she would be better off with another onc (the one I am seeing on Wednesday) But because I felt I needed to be at home I didn’t go to see her I have tried to text her but I don’t think she has the strength to use her phone.
Anyway back to me the onc who I am hoping to see is has really got a good name and is well thought of. But Jenny BN was really helpful and as she has seen the skin mets from the beginning she said even if the scan was ok it would be a big job as the mets are all over the place and cover a large area she could not understand the consultant suggesting it. I must admit it had gone through my mind. I know with the ECT he said they could come back it would be nice to be rid of them I feel I am rotting from outside as well as the inside. I feel annoyed that the onc at the time of first mets did not do anything before I got the involvement of ‘C’ in the ribs but he was a locum and i was naive and trusted him. But so many do not understand skin mets.
Daisy tell your Mother we send her cyber (((hugs))) I know how it feels to have bad legs as I have MS and cancer mets in both legs. I hate being in the wheel chair but when I have to walk such a long way in the hospital the chair does help and I take my stick with me and use it to walk when I need to have my jab. What I do find very helpful to keep me walking is my rollator I did not think I would use one but it is the best thing to help with shopping and gives me independence and stops the driver of the chair pushing me into a line of clothes. It also has a seat and under the seat is a pocket to keep my handbag in it is a four wheel one. The first time I really noticed one was when a young woman was in the supermarket she was sat on it and moving along the aisles. When i asked her about it she convinced me it was a great thing to have. I got it from Amazon £50 all but a few pence its called Driver I have seen the same thing for over £100
Love and ((((hugs)))) to you all xxx
Thanks all.
Jan really sorry to hear about your liver mets.
Marirose - it’s awful that your results weren’t ready and I know how unsettling it must be not to have a consistent onc. Those of us that need to know details really need that. The NHS is not in a good place at the moment - I work there and the staffing levels are getting bad - everyone under pressure trying to do too much.
I just got back from hospital. They sent my mum an ambulance today as she could barely move out of bed - pains, and falling when she did as cannot feel feet and was having urinary incontinence. They were concerned about spinal decompression. We saw the on call dr on ward. They think it is unlikely as her ct 4 weeks ago showed nothing on spine. However she is having MRI tomorrow to check as the symptoms are extreme for the small amount of chemo she has. They suspect peripheral neuropathy but it’s a bad case. It’s so hard seeing her in pain. Not sure how long she will be in.
By the way, mum has 49 skin mets - we printed off some body outlines and tried to mark them down but it was tricky with there being so many.
Sending you all love.
Xxx
Hi Jan, just to say that I am on Eribulin and that it is working really well, liver mets reduced and tumour markers downe from1014 to 330, so hopefully you will benefit from Eribulin.
there are currently three of us posting about Eribulin on the bone mets thread and on the Eribulin thread.
i have been really well since starting my second cycle…have now finished my fourth.
Do let us know how you get on
Moijanxx