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metastatic breast cancer with cutaneous mets.

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Re: metastatic breast cancer with cutaneous mets.

Hi all, still hanging on. Best wishes, Tournesol x
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Re: metastatic breast cancer with cutaneous mets.

Ps Mathew does believe in markers and he wants them done even though they don't give a true account they do show movement which he prefers

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Re: metastatic breast cancer with cutaneous mets.

Hi Tournesol

I do hope you are coping well and send you my LoveHeartand loads of ((((((((hugs)))))))) 

 

Hi skinny friends 

I have now met my replacement onc he is really lovely. I have decided on Paclitaxol and he agreed with my reason for choosing it and said I chose the right one. He was really thorough with the side effects and when and who to contact when things wrong (temp and all that) and said to go to A&E no messing about. Others always say ring here or there if before 5 o'clock. He had read all my notes that last weeks onc had prepared for him. When I mentioned the lung mets and right tumour being unknown to me he explained why the lung mets could have not been reported on the last scan whereby they were unsure they were mets because of being too small to tell. The right breast tumour he could not explained and appologised that it was not explained to me.

He asked about my skin mets and was aware of my recent ECT and Mr. Mattucci email. He asked to look at them and suggested I leave the two options alone as I would have enough to contend with. He did say he would have a word with the Radiologist and my past radiotherapy back in 1996. He asked if I had heard of him and I told him he was my onc from primary and secondary dx and said he could not recommend it on the chestwall tumour because the left side was scared but Mathew thinks he could catch the bottom few and some on the other side. So it is watch this space for now.

Another thing he is requesting a head scan with the MRI as I have been having flashing lights and swirly lines in my eyes. He also is going to arrange for me to see an eye specialist. If i had not heard from the MRI dept by Monday I have to ring my BN to let them know, But when I arrived home it had arrived and is the 1st October.

So it would seem he is very thorough thank goodness I can't believe it he may give me a little longer with any luck.

 

Love to you all ((((((((((((((hugs)))))))))))))))  xxx

 

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Re: metastatic breast cancer with cutaneous mets.

Daisy, have just come to the forum after a few days break and am in bits. So sorry about your mum. I cant say anything more than all have said before. You and your mum were an inspiration...two brave and beautiful ladies. It is so lovely that you are using your special day to celebrate your mum. my thoughts and sympathies are with you and your family.

 

Tournesol..sending love and best wishes to you too. Without you and daisy i would know nothing about leptomenigeal mets. I have been tellling my onc for 6 weeks that i have had a pain in my neck and base of skull, like i have slept funny or cricked it. He doesnt seem too botheres bt has added 'neck' to the instructions for my next scan. Now i know about this condition i will insist its checked out. I hope you are finding the hospice a calm and restful place. I only go as an outpatient bt the people there and the atmosphere seem lovely..i hope its the same for you. xx

 

janice...so pleased to hear you are trying another treatment. Have everything crossed for you. keep fighting!!

 

Marierose, so sad to hear you have been out of sorts. I havent read the other threads yet but i really sympathise with you, as we all do. Somehow, having this constant visible reminder makes everything worse doesnt it?

I saw my onc today and despite my worries that things are worse he is not convinced there has been a change. He is still momitoring me every 3 weeks so cant really ask for more..i'm sre he's realised i am a 'stresshead'!!

 

Sending love and hugs to everyone.xx

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Re: metastatic breast cancer with cutaneous mets.

Hello tournesol
Gatecrashing this thread ( I don't belong here yet!) Just wanted to send you lots of hugs as the days can be long and am thinking about you.
Carolyn xxx
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Re: metastatic breast cancer with cutaneous mets.

Tournesol, I am sorry to hear about your situuation. i had been wondering how you were. It was lovely to hear from you.  I know we are all thinking of you and please keep in touch with us....we are all here for each other.

 

Moijanxx

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Re: metastatic breast cancer with cutaneous mets.

Hi Daisy, was sorry to find this sad news when I came on the forum today, your mum was a very brave lady and you gave her a lot of comfort and stays with you in your home..for breaks and support. I am positive she will be watching over you. Am glad you both had time to exchange your feelings for one another near the end.

 

when my mum died after a stroke, I firmly brlieve she chose to go at that point, because she asked me questions to check that myself and my sister were ok, the night before. I have seen and heard about loved ones making choices about when to pass on. That may not be a comfort to you,  now as I recall the terrible pain of loss. You did all you could to help your mum.

 

love to you and your family

 

Moijanxx

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Re: metastatic breast cancer with cutaneous mets.

Are you having treatment for it tournesol? My mums treatment was withdrawn other than medazolam, painkillers and anti physcotic meds. I tbibk that was due to its aggression - but my mums cancer seemed much more aggressive than any I've read about.
Xx
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Re: metastatic breast cancer with cutaneous mets.

Thanks for thinking of me! I am still here and worried about how soon I will deteriorate but trying to take a day at a time.

 

Best wishes to all.

Tournesol xx

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Re: metastatic breast cancer with cutaneous mets.

Yes, Marirose, it's so important that both daisy and Tournesol have made us aware of Leptomeningeal mets. There is so much to learn, and we all need to know what we can. We can all share here. Perhaps the oncs and BNs should be visiting our threads too! They could learn a lot about the context of their treatments. So thank you so much, Daisy and Tournesol, so coming and sharing, and letting us hold out our hands to you. My thoughts have been with dear Daisy.......losing your mum is so hard, but I think they were so strong in their love it will give Daisy the strength she needs.

 

Tournesol, I hope you are feeling safe and secure in the hospice. They understand the broader needs of those in their care, as well as having real experience and knowledge to help with specific problems. Experts in all aspects of palliative care. It must be calming to be with people who truly understand. I hope you are feeling some of that warmth. As Marirose said, do keep visiting here and letting us know how you are if possible too. Thinking of you at bedtime tonight..........

 

Take care everyone.

 

mo             xxxxxxxxx

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Re: metastatic breast cancer with cutaneous mets.

Dear Tournesol

I have tried to pm you 4 times but it looks as though you may not be set up for pm's.

Thanks to you and Daisy you have highlighted Leptomeningeal I am so sorry you have to go through with it. This cancer is such a cruel desease and stikes us in so many different ways. I hope you are surounded with lots of caring people which is usually how they are in hospices. But come on here and chat as much as you like we have lots of caring ladies who pop in to see how we are doing.and ladies with skin mets who are very knowledgeable.

 

Sending you loads and loads of love and cyber (((((((((hugs))))))))))  xxx 

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Re: metastatic breast cancer with cutaneous mets.

Dear Daisy, I'm so sorry to hear about your Mum but I'm sure you will gain comfort from the fact you were with her to the end and you both were able to speak openly to each our about your love for one another. All the other ladies have written so eloquently I feel my words wouldn't come across so well but I am thinking of you and you know where to find us if you want any support. Take care.

Tournesol, so sorry to hear that you are still suffering. I hope that you are getting the right help with any discomfort and managing to cope with this latest setback and that things are able to improve.

Smartie, it's good to hear from you as well (and on the other thread). I'm glad the shingles are improving and hope that the eye problem doesn't get noticeably worse.

Thinking of all you lovely ladies going through tough times with treatments.

Nicky x

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Re: metastatic breast cancer with cutaneous mets.

Daisy so sorry to hear your news, thinking of you & your family at this difficult time, thank you for sharing it with us.
Tournesol - sorry to hear you are suffering too, sending positive thoughts to you.
Smartie x

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Re: metastatic breast cancer with cutaneous mets.

HI Tournesol,you are such a great member of this forum. I want you to know that I am thinking of you and remembering you in my prayers.Love Marie xxxx
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Re: metastatic breast cancer with cutaneous mets.

Very best wishes, Daisy. Your little mum has her wings now as Marirose said. Safe and sound. She has flown high, and left her deep love with you. She'll keep an eye on you! As you said, this will be a doubley important day for you every year now, a day to remember the good times. She will be smiling down. You will feel it in quiet moments. Take care, and do visit us any time.

 

mo             xxxxxxxxxxxxxxx

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Re: metastatic breast cancer with cutaneous mets.

Dear Dear Daisy

I am so sorry for you all but your mother has now got her wings and will have no more pain. Thankyou for sharing your last moments with her you really have touched our heart strings. I am so pleased she managed to say goodbye to your sister from Canada. Condolences to your family and friends.

 

Thankyou for bringing Leptomeningeal to our notice it is something I have not heard of before. You have also brought Tournesol back into our thoughts.

 

Daisy we have become to love you over the past weeks. May you have lovely memories to keep your Mother alive forever.

 

(((((((hugs)))))) and love xxx 

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Re: metastatic breast cancer with cutaneous mets.

Daisy ..Im so sorry that you have lost your mum ..but with the quick progression , she is now free from pain and you have been the most wonderful daughter and she clearly appreciated you.
There will be so much to do the next few weeks but take time to grieve and think of all the happy times.
Accept help and support from friends and family ...
Carolyn xx
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Re: metastatic breast cancer with cutaneous mets.

It's also my first year wedding anniversary today. I'm going to make sure that each year I celebrate my mums life on this day now. Xxx
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Re: metastatic breast cancer with cutaneous mets.

Thank you everyone. I'm not sure it's sinking in. She was amazing. I say was as she passed away just before 4pm. I stayed with her for a few hours afterwards.

Tournesol - my heart goes out to you. I know nothing can change this but I feel I can give you some advice. Tell anyone important to you precisely what you feel about them now. I say this as confusion starts to kick in fairly rapidly with the Mets and the medication. My mum started with confusion as they diagnosed it. Fortunately she has some non confused states the first couple of nights and we managed to say some last important things. Not that we hadn't covered them but I was desperate to tell her that last million times that I loved her and hear her say it back.
My sister made it back from Canada amidst all the confusion but my mum still managed some small snatches of smiles and telling her she loved her.
Sending you lots of strength to get through this in the most comfortable way possible.
It's truly heartbreaking what you're all going through.

Hoping that sharing my journey may help someone in the future.

Xx
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Re: metastatic breast cancer with cutaneous mets.

Dear Tournesol

I can only reiterate what Helen has said she has put it so beautiful. We are all with you in our thoughts and prayers.

Please keep chatting on here we would love to chat with you.

 

All our love and sendng loads of (((((hugs)))))  xxx

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Re: metastatic breast cancer with cutaneous mets.

Tournesol, I'm so very sorry to hear this. I hope you are comfortable and the hospice is a very good place.

 

I can't believe the news but my thoughts are with you. You've been such a great support on these forums - I hope we can give you some comfort whenever you feel like popping on to say hi. Wishing you peace, calm and happiness every minute and every day.

 

Helen xx

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Re: metastatic breast cancer with cutaneous mets.

Dear Daisy,

 

So sorry to hear about your mum. I am also in hospice with leptomeningeal mets, also diagnosed late and with a short prognosis. It's so tough. Wishing you both as much comfort and peace as possible.

 

Tournesol xxx

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Re: metastatic breast cancer with cutaneous mets.

Dear Daisy

I am so sorry to hear your news about your Mother.You have been by her side all the way through this awful disease. At least she has been able to tell you how much she loves you something that will stay with you for the rest of your life.I am pleased you have shared your love and concern for your Mother with us and we would love for you to keep in touch. May the time you have left with her you will see her free from pain.

 

Much love to you and your family ((((((((((((hugs)))))))))))))  xxx 

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Re: metastatic breast cancer with cutaneous mets.

Dear Daisy, So sorry to hear about your little mum. She has told you how much she loves you.......that is so important. She will be keeping an eye on you always! I sat with my little mum last year. I talked and talked to her, gently, and I'm sure she heard because she smiled at one point. It has all happened so fast......no time to adjust, although really one never can adjust. I said before that love will see you through. I talk to my mum....and my dear dad.....I was with him too...........every day. You have worked so hard for her and she knows that. I am thinking of you both. Thank you for sharing with us on these threads. I am really grateful to have 'met' you. This secondary disease really must get more attention. Try to eat and sleep yourself. She will want you to take care of yourself. You have been a wonderful daughter........she must be so proud of you.

 

mo                       xxxx

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Re: metastatic breast cancer with cutaneous mets.

Daisy ..so sorry about your mum being so poorly ..it seems to have progressed so fast but I suppose its the nature of the beast with this disease. ..it's unpredictable but enjoy all the time you can with your mum ..even if she's sleeping ..hold her hand etc .
I lost my mum to bcc when I was 21 and after 40 years I think of her every day ..good memories will always b with you not these recent ones.
Carolyn xxxx
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Re: metastatic breast cancer with cutaneous mets.

Hi all

I am in a hospice with my mum. Mum was admitted to hospital last Thursday as they suspected spinal decompression. This was ruled out and they seemed confident it was peripheral neuropathy, although a very bad case. Unfortunately following further scans it was finally diagnosed as leptomeningeal metastisis seen in the spinal area. Mum has deteriorated rapidly. We came into the hospice on Wednesday. Mum was in lots of pain - legs, lower back, leg weakness, numbness, pins/needles at home. This got worse and whilst in hospital she became increasingly confused - intermittent - deja vu and random conversations- at first thought to be due to the painkillers. At first though there were normal conversations and she got to tell me how much she loved me, that she'd always be alive in my head and that nobody could take that from us. It has been such a rapid decline and one that was always filled with more promising news than the truth. First, over a year ago, she was told the chemo destroyed all the cancer in the nodes, then when they realised this was wrong (they took the wrong nodes out to check) she was told she was in a good position with only 2 nodes affected, then told the skin met was a cyst, then given estimate 12-18 months(1.5 months ago), then even up to 6 weeks with meningeal mets. That was a few days ago. The hospice tell us it's going to be soon. I won't begin to describe how I feel. Mum seems out of pain now, although not showing signs of communication now. I have only left her side briefly as her brother and sister are here so giving them some time. Thought I could update on here although I'm anxious to get back in there.

Sorry to bring bad news to a thread that already seems full of worry.

Wishing you all the best with your treatments and hoping you, and any future women reading this (as I scoured the previous posts) all the best.

Xxxxx
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HuhRe: metastatic breast cancer with cutaneous mets.

We all seem to be having  so much trouble with these maddening skin Mets,they bother me more than what's going on with my liver, I think with that it's out of sight  out of mind.

 

After deliberating weather or not to have further chemo I decided I couldn't just sit and watch them get worse knowing I could have treatment which could help so had my first Eribulin yesterday.  Haven't used cold cap this time as it only takes about 10 minutes would be nearer 3hours with it,some say hair thins others it all falls out so I will take my chances, have ordered a nice wig. 

 

You were lucky in Tenby Stresshead,whenever we go to Wales it rains,lovely place though.

 

Take care

 

Jan

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Re: metastatic breast cancer with cutaneous mets.

Hello skinny friends

Well I am in limbo land at the moment. My skin met treatment has been put on hold for now until I can get sorted on a new treatment which I have wrote about on Cape and scanxiety threads.

stresshead I look at my skin mets and I see new ones only little but they are there. I am unsure but I think I have a new one on my spine it has been there about 3 months now I did show BN and onc at the time but they were unsure about it.

I have now got an area that was ulcerated before which seems vulnerable its only small but I caught it in the bath and I got into a right mess blood was pouring from it and it wouldn't stop. I managed it with a flannel and put a dry dressing on just like before and it did dry up but now I only dab that area with water.

I have mentioned it to the onc but her concern is the other blighters at this time. My blood does seem to be pouring out more quickly I was concerned but they say blood is ok apart from a rise in a name i can't remember but it is to do with the bones and it was nothing to get alarmed about as it was only a little rise.

 

So you can see I am in a bit of a mess at the moment but I will bounce back.

Love and (((hugs))) to all  xxx

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Re: metastatic breast cancer with cutaneous mets.

hi ladies, just returned from a few days awy in tenby. Weather was fantastic and the break really did us good especially my husband who has been finding things too much recently. Havent had chemo for 5 weeks now (although if you count the 3 weeks cycle its only 2) and i'm convinced my skin mets are worse..may be just me. My onc seemed pleased with everything and the district nurse today, a new one, said the area was healing well and shoud get better now as my body can put more energy into the healing process rather than coping withthe effects of chemo?? we will see.

Marierose, read about your scan fiasco. Replied on scanxiety thread. I agree though tat you should go to Sheffiels and see what they say. Even if it all comes to nothing at least you will know. If you do decide to look into the treatments please let us all know...there hasnt been mch info on this sort of thing but there wasnt on ECT and look what it did for us.

Love to all. x

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Re: metastatic breast cancer with cutaneous mets.

Marirose, I'm so glad you are seeing a good onc next week. Good reputation. That's excellent. That's good for review of scan results, and good because of getting an opinion about grafting etc at Sheffield. This onc could refer you. You say that Jenny BN couldn't quite see the point but to be fair she is not an expert in this. I think you should see those at Sheffield who have hands on experience of dealing with all kinds of skin problems. They will tell you what you need to know. They may recommend partial grafting of the worst areas to start with. I think you should see what they say. You still would not be committed at that point. And you said Sheffield is a centre of expertise. Maybe just let them have a look.

 

But anyway, you may in fact be better placed now, seeing this onc next week, a consultant I assume. Also I understand how you feel about your friend, but you were right to see to your own needs at that moment. You were thinking of her at that time, and that is what matters. Her partner may look through her phone and find your texts to read to her when she is feeling up to it. A message of any sort is so important.

 

Your advice to Daisy sounds very helpful. I think knowing that symptoms such as her mum's can improve as well as continue has to be heartening. Fingers crossed for her and the painkiller they have prescribed. And the rollator idea is a good one too. A sort of halfway house. One of the hospitals near me.......not where i go fortunately but my dad was there......is built completely on ground level. You need to be a fit and healthy long distance walker to deal with it! Miles of corridors. They have wheelchairs, but never one available of course.

 

Take care, Marirose, and gird up your loins for meeting the new onc! i am never quite ready with the right questions. I think of things afterwards! So have  your questions, but also keep alert and don't hurry. We need thinking time. Best wishes to everyone including stresshead, nicky, moijan, Daisy, janice, everyone. I read this thread every day!

 

mo           xxxxxxxxxxx

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Re: metastatic breast cancer with cutaneous mets.

Hi janice

Just a couple of things, the first is to wish you luck with the new chemo, it must be so difficult to be on yet another one but really hoping this one works as well for you as it seems to be doing with anyone on it.

Secondly, you can see the whole thread if you are using a tablet or PC (not sure about using a phone). When you are replying to a post if you scroll down the screen until you are just under the box you type in there is a message in pink that says 'View discussion in a pop up' if you click on this you can see the thread in a separate window and you can then click back onto the box that you are typing in. This feature has been there since the beginning of this form of the forum but it took me a couple of years before someone pointed it out to me! It's very handy with a very active thread as I can never remember what everyone has written!

Take care all skinny friends.

Nicky x

ps I meant to have added to Daisy that I'm so sorry you Mum has had to go into hospital, I hope they find out exactly what is causing this and can treat her quickly so she gets back home ASAP.

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Re: metastatic breast cancer with cutaneous mets.

Hi Daisy,

 

so sorry to hear about mum, what a rotten time she is having. Hopefully they will be able to sort things out for her so she can get home to you as soon as possible

 

much love,

 

Moijanxx.

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Re: metastatic breast cancer with cutaneous mets.

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

 

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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
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Re: metastatic breast cancer with cutaneous mets.

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

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eRe: metastatic breast cancer with cutaneous mets.

Marirose, I had a look at your scanxiety post and........what a mess. Apart from all the waiting time, one has to ask why they thought you were coming. They weren't prepared at all. No scan results is really not on. I feel there should be at least some connection between the scan and the appointment..........results flowing from one to the other. And your rather liquid oncologists, flowing around. The department seems to be in flux right now. BUT......you have an appt with the 'retired' onc who will be experienced and that is good. In many ways they are wasting their own time as well as yours, but what's the point of even noting that. Jenny sounds as though she has a finger on the pulse & very helpful. Anyway, just to say we are all keeping fingers crossed that all will be well scanwise. Waiting is one of our symptoms! Take care & hoping you are having some nice warm days at the moment. The sun is out with me now but not hot. Good! I'm going for a bite of lunch, with cardie on,

 

mo               xxx

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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
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Re: metastatic breast cancer with cutaneous mets.

Hi Daisy.. I have just come of Paclitaxol, (changing to another chemo) I have had buckling legs too.. And sciatica at the same time. They wondered if it was spine problems and gave me an MRI to check all ok, which it was. Did you tell the registrar about it . Maybe it was because of the sciatica that I had the scan.  But my calves seem to buckle. Infact as I walked down the aisle at the end of the wedding in July  I buckled over completely! Was a bit of a comedy moment.

 

i also have lots of pains shooting about and regular agonising cramps in my ribs back feet etc.  I take diazepam when it's bad which is an antidepressant. Don't worry these drugs are often good for nerve blocking and muscle relaxing as well as treating depression. 

 

i also had and still have peripheral neuropathy which is the numb/tingling in the feet and fingers. I'm not sure how bad is bad.  There is a chance the feeling won't come back as nerves can be damaged but not necessarily. It's a wierd and unpleasant feeling but bearable and normal but again it is important to monitor somehow how bad it is and to constsntly tell oncs of all side effects each time..

 

its tough, I'm lucky (sort of) to be possible younger than your mum..at 47, but bear in mind they can reduce the dose so ask about this next time. Still can be hughly effective on lower dose.

 

best wishes, and send our positive thoughts to mum 🙂

 

Helen xxx

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

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
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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

Thanks Nicky for your advice - much appreciated. I think the main concern now is the peripheral neuropathy. If she gets totally numb feet she will not be able to walk or drive. As my mum had been given a 12-18 month prognosis as she is now triple negative, she does not want to be bed bound for the sake of a few months - which I understand (but of course it hurts me that she won't be here). Her happiness takes priority over mine though. 

I'm guessing it is the taxol and hoping we can change that one. The on call dr said she can have another combination but it isn't as effective. However, there is no guarantee that the taxol will be effective anyhow. I know it wasn't for stresshead so we are of the opinion that she puts her happiness first. 

Thabks mo for your comments about us being close - we really are and I will cherish that, even though that makes the whole thing even harder.

read the comments tonight about how hard it is to have constant chemo and get fed up. Even as a non sufferer I can see that. It just an ongoing battle. I know the longer my mum went on, maybe the easier it is for me, but I want what is best for her. I guess she needs to work out what is best for her and anyone who loves her will respect that.

i also get the looking at other people and thinking how lucky they are. I think that as an outsider, losing her mum who I Love so much. But believe me, I also appreciate how it isn't me in that position so I completely understand and appreciate how you feel. Maybe when you have close relative going through it, you can also appreciate how hard must be.

best wishes to you all. Wish I could stop all of what you must be going through. Xxxx

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Re: metastatic breast cancer with cutaneous mets.

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💙💚💜

 

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Re: metastatic breast cancer with cutaneous mets.

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 

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Re: metastatic breast cancer with cutaneous mets.

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

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Re: metastatic breast cancer with cutaneous mets.

Nicky, Just to say thank you for visiting us here! You are so right that visitors may have useful info on aspects of treatment that relates to cutaneous mets. Everyone secondary has so much to share. And there are lovely people here on our skinnie thread who share and support each other no matter what. Of course many of us visit elsewhere........I have bone mets so visit the bone thread daily for example. But our little skin thread is tight knit! So of course your advice and experience of chemo for Daisy & her mum will be I'm sure so useful  and heartening for them. For myself I soak up anything as I will eventually have to change treatments and I like to know what I can.

 

Personally I don't talk much with family, and even friends think I am doing fine and so strong!! They don't know. And I don't want to frighten them, so say nothing. Here we can share and we understand. Daisy and her mum have the perfect way of course........being open with each other. Better than fretting about the others feelings, and they are so close. Love will see them through.

 

Take care everyone. You sound stronger today Marirose! Good! You are right........in our boat we have to learn to be proactive and take our case to the medics. I had to raise the issue of radio with my onc, he paused, and then said of course. Good idea. Usually in life I have been a shrinking violet!

 

mo                      xxxxx

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Re: metastatic breast cancer with cutaneous mets.

Hi skinny ladies, hope you don't mind me dipping into your thread but I do read it, as a lot of us non-skinny ladies must do as well. Mainly to see how you are all doing and to offer advice if any aspect of my treatment is relevant.

so, firstly sending huge hugs to Marirose, glad to see you are now on the up after being on a bit of a downer. We all have them, it's the nature of the beast, so no apologies ever! I can't help with your dilemma but hopefully you can be guided but others that can help you better than I can. Lovely reply from Daisy which says it all about talking it out with close family, or even your cyber family on here.

Daisy, I just wanted to say I'm sorry to hear your Mum has struggled on her first Taxol. I know she has already had Taxotere, which, as you say, might be triggering the sharp pains. I just wanted to say that when I had my first  Taxotere/ docetaxel in 2013 I couldn't believe the pains I got. I really thought I wouldn't be able to go through the other 5 cycles I was due to have. I even was given liquid morphine for the next cycle just in case it happened again! However, I didn't need it and it didn't happen at any point in the following 5 cycles. I'm hoping the same thing happens with your mum, that it was a reaction with the first infusion but she doesn't get it with the others and no long term damage is caused either. 

Hugs to all skinny ladies, you do have a tough time with this being any area of mets that doesn't seem to have much research, and therefore a defined treatment plan, in place.

Nicky x