Hi everyone,
I wanted to follow up this thread that I put on a while ago
I wanted to hear from any stage 4 ladies with mets to the lung. My Mum first had bc when she was 42, she had a lumpectomy and radio treatment. She had ned for 14 yrs then had reaccurance in her other breast and had just the one breast off. She had something called a flap, muscle taken from her back. She was then on Tamoxifen. 5 yrs after she had 12 nodes removed and again five yrs on she has mets to the lung. It all started with shortness of breath and she had it drained twice. She then had plerodesis. They tried her on faslodex but the cancer progressed and she has now had 6 cycles of ec chemo. Her breathing isn’t any better and she can’t really walk anywhere. She also has lymphangitis. She has a ct scan tomorrow then back to onc on 29th April. I am really worried. The onc has told me life exp 2 yrs and I am not coping with this very well. I wondered if anyone knows of anything to help the breathing?
Seen the onc today and I haven’t stopped crying. He said that ther has been a slight improvement. My Mum asked about life exp and he said that’s not changed. She said that she has had 12 of those months now and he agreed. I am finding it very difficult to cope with. He is putting her on Tamoxifen to see if this will control it and then another chemo.
Hi Holly – so sorry to hear about your Mum’s current situation, but please understand that our oncs can’t really give an accurate answer to “how long?” until we are very ill indeed – many of us with mets in various organs (including lung) have had good responses to our treatments, which have enabled us to have a better quality of life for longer than predicted. I don’t have lung mets (mine are in my bones & liver), but so far I have been very lucky with my care & treatments – mets dx 4½ years ago – and I hope your Mum will also do very well on her treatments.
Marilyn x
Holly
I’m sorry to hear your news but it is good there has been a slight improvement. Hopefully, you remember me from when I posted before and told you about my situation of lymphangitis and solid lung tumour.
Nobody can ever say what a ‘life expectancy’ can be as cancers do not all act the same and some people can live for far longer and others can be overcome by cancer spread very quickly.
You sound so distressed that it makes me wonder what support you are getting. Does your mum have a MacMillan Nurse or see anybody from the hospice? Can they offer any counselling for you both. I’ve been under the care of the hospice now for about 20 months and they have given us lots of psychological support and from your post that is what I feel you need. You do not say how your mum is coping emotionally. Is she as distraught as you? From the way I am reading your post, your mum sounds as if she is coping better than you but it may not the case as mother/daughter relationships are unique and I wonder if you are being equally honest with each other about how upset each of you are feeling. Does that make sense?
Does your GP have access to counsellors as I feel you need help in dealing with your feelings or you will not be able to support your mum which you obviously are desparate to do.
You could phone the helpline here as well for support and advice.
Do you know how many more chemo options are left?
Sorry - I seem to have asked more questions than given you answers.
Have you posted this on family and friends part of the forum as they are probably in a better position to help you than us women with secondaries about how to deal with your distress? As a secondary bc woman, I can give my opinion and support about treatments but feel unable to help you as a daughter of a bc lady how to cope with your feelings which seems to be your main focus of the post.
I hope this post reads OK as the last thing I want to do is upset you further but the way I read it is that you as a wonderful, caring daughter is finding it hard to cope as anyone would in your shoes and I think you need to get help for yourself so you can support your mum and seeing a counsellor of some description or getting support on the other part of the forum might be more helpful to you than what we can say here. I’m not saying that it is wrong to post here and hope you do keep us all updated on how you and your mum are doing but I just feel at the moment the help you need might be found elsewhere on the site.
Really hope the tamoxifen helps and the new chemo does the trick too. Do you know which one that is as I’m sure we can help you with what sort of side effects and ways of overcoming them.
Really hope I haven’t upset you and feel worried that by trying to help you I might have put my foot in it.
Please do keep in contact and let us know how things go.
Thinking of you and your mum
Kate
Hi Holly
As Kate has suggested, you may find it helps to talk things through with one of our specialist nurses on the helpline, they can offer you support, information and a ‘listening ear’. The line re opens tomorrow at 9am on 0808 800 6000 so please do call if you feel it would help.
Best wishes
Lucy
Hi,
Thank you for your comments.
Dippy Kate thank you so much for your time.
My Mum does have a Macmillan nurse and I also asked to see her. She did visit me once and I was quite upset but she hasn’t even contacted me since to see how I am doing so I think i will get in touch with them. I’m not coping with this at all. My dad had also just had his kidney out because of a tumour so it’s a very tough time. I also have a 9 month old baby and it’s my Mums goal to see her go to school.
My Mum has been dealing with it in a strange way she says it’s as if it’s someone else that is ill and it’s not happening to her. At the last appt with the Onc though she did say that she feels different I think it’s hit her how ill she is. She actually said to me that she has got things to sort and that she is dying.
I have posted this on family and friends but only had one reply.
Holly
i’m sorry that the MacMillan nurse has not been more supportive to you. The level of support seems to vary so much from place to place which seems wrong.Often the boards are quiet over the weekend so hopefully next week you will get more replies.
I’m sorry to hear about your dad as well - that is a lot to cope with.
As you have a small baby - do you have any contact with your health visitor at all - again I know that varies from place to place how much support they can give you but it might be an another avenue for you. I would definately see your GP though and talk to them about how you are not coping and see if they will refer you to counselling.
I can identify what it is like to lose a parent when you have a small baby. I moved 140 miles away when my twins were 3 weeks old and away from my terminally ill father. It was very hard trying to cope with the move, making new friends, and trying to get back to look after my dad as often as I could. There were frequent times when I felt I couldn’t cope but with support from the Marie Curie nurses and health visitor and new friends from the first time mums group I sort of got there but did in the end see a counsellor which did help.
Hopefully, your mum will survive for longer than predicted just as I have but it is such an unpredictable disease.
I think when I was first told I may only live a few months I went into a sort of denial and still feel as if this is not real. I know I’m very ill and will die very soon and then I’ve also got to get on with ‘normal’ life such as the washing, getting the kids too school etc!! It really feels as if I’m in a sort of soap opera and it’s not really real.
Then I have practical days where I sort out my affairs, make memory boxes etc and ensure things are sorted out so that when I die my hubby will know what to do.
This has taken me a long time - a year perhaps - to get my head round this and to get my final plans in place. It sounds as if your mum has reached the same stage mentally as I have and I really can identify with the ‘its not happening to me’ frame of mind.
Holly - my heart does go out to you and I really hope someone can give you more support than I can offer you. I’m really sorry not more people have replied to you.
Take care of yourself, your mum and of course your baby.
Kate
Since seeing the onc 3 weeks ago, the lump in my mums neck has got bigger and she also has a small one on the bottom of her shoulder. Does anyone know what this could be on her shoulder. It seems to me the Tamox isn’t working. We go back to onc 28th this month and he has talked about more chemo.
Holly - Sorry to hear of your latest news of your mum. Is it possible to see the onc this week by ringing up the onc’s secretary or BCN? The 28th seems a long time to wait if you feel the lump is bigger.
I’ve really no idea about this shoulder one? You could try the ring the nurse service here in the morning and ask them otherwise.
Oh dear, I’d hoped you have better news.
Thinking of you and your mum and your baby
Kate
Hi Kate,
I have spoken to Mum regarding her appointment and she would rather wait. It is a week on Tuesday, I don’t know if he would see her any sooner or if it’s worth it. We are having Layla christened this Sunday and I don’t think my mum wants to be on any chemo for the christening. He did say last time that he could always do rads on the lump. Would things progress in another week? I will phone the breast cancer nurse tomorrow and ask her.
I may phone the onc secretary anyway so she can at least let him know. Just don’t know what to do for the best.
It’s a mess!
Had the appointment with the onc and my Mum starts Taxotere tomorrow at Christies.
Has anyone had this chemo? I would be grateful if you could let me know how you got on with it.
Holly
Holly - it’s good they have a plan now for your mum.
there have been many threads about taxotere so if you go to the search facility on site you should find loads of info on it.
It can also depend if she is having it weekly or 3 weekly as to side effects.
Hope it is going OK - I used to find days 3-6 really bad but altogether I found taxotere the worst chemo I’ve ever had but lots of other people are fine with it.
Kate
Hello Holly - Like Kate, I’m sorry that you have not had more replies. But having said that, Kate has clearly being doing a fabulous job, and I hope you won’t mind my joining in. I had three lots of Taxotere and found them not too bad really, main side effect was bodily aches and pains, but they were controlled with pain killers. I know it’s different for everyone. As Kate says, there are lots of threads about it. I can only re-iterate everything Kate has said, and hope that you get good support for yourself. What a terribly hard time for you, caring for and supporting your mum and also looking after a new baby. If you and your mum can continue to be open and honest with each other I am sure that will help her more than anything. No one can predict with accuracy how long she has, but she clearly wants to make sure that her affairs are in order and I am sure that if you can support her in this and know what her wishes are then that will give her great peace of mind, although clearly painful for you. Do get back in touch with the MacMillan nurse for support for YOU. Thinking of you both.
Hi Kate, I know this is Holly’s thread really, but I have read a lot of your postings, and here you are again with wonderful advice and words of wisdom when you are in a situation where you would be forgiven for being entirely self-absorbed. I am sure that you are a total inspiration to everyone who reads your postings - and indeed to everyone who knows you. Your children are incredibly lucky to have you as their mum, you are clearly a very special person. Hope the good days far outweigh the difficult ones. Love Sarah xx
Hi, Holly
Sorry it’s taken me so long to post a reply. I’ve looked on the site a fair bit but have been busy what with one thing and another. No excuse, I know, but you know how it is.
I’m stage 4, and was at diagnosis in 2005. The bc had spread to the bones and was in both hips, spine, ribs, arm and sternum. I, too, was told two years would be a good lifespan for me. That was then. Nearly three years on, I’m doing things I couldn’t do in 2005. It was my son’s wedding on Saturday and we had a ceilih band and guess what - I hardly sat down!!!
I had taxotere last year. It certainly wasn’t a walk in the park but hey, people don’t die being on chemo! It will probably be rough on your mum but I just kept telling myself it was only a temporary state of affairs and WOULD get better. I had terrible aching legs and needed stronger meds than paracetamol. Can’t remember now what I had, think it was co-codomol or something. Also had hair loss, loose fingernails and toenails; some fell out. I should have had six sessions but they abandoned it after five because by then I was sleeping/resting about 20 hours a day and, quite frankly, was a bit of a sorry sight. But I’ve recovered from all that, my hair’s grown back, I’ve had it coloured, my fingernails and toenails have sorted themselves out, I’m walking without a stick - and planning a cruise to Alaska next year 
All being well, your mum will be in a similar position to me in the not-too-distant future. As I said, it won’t be a walk in the park for her or you, but she’ll get there, and tell her from me that she’s very, very fortunate to have such a caring daughter.
I hope this helps.
Good luck to us all.
Maureen xx
Hi Holly
just to say I was treated at Christies before I moved to Cornwall my bc nurse was Sue Nayler and she still helps me with problems 6 years after leaving Manchester. She may be of use to you.
Good luck with her treatment and try not to panic too much. I know thats easier said than done.
Love Debsxxx
Hi Holly
I’m writing to you because I am about your mother’s age and I have two daughters about your age. One of the hardest things to face when I knew I was stage 4 was telling my daughters as I knew how frightened and wretched they would be and their unhappiness was as upsetting to me as my own fear. I also found it necessary to sort a lot of things - everything from financial stuff to putting together photo albums for each of the children. Once that was out of the way I found it much easier to get on with living day by day. Some time on, with a few tears shed, we are getting on with our lives. We see more of each other than we used to, we go out together - to the theatre, to meals, to the pictures, we’re going on a cycling weekend together in France this summer… We speak on the phone more than we ever did. We all know why this is - we are trying to pack the twenty years we thought we would have into one or two - but we no longer need to talk about it. What am I trying to say? I suppose that I understand how dreadfully afraid and unhappy this is making you, but that almost everything becomes sort of normal after a while. My Dr gave me 2 years (I have mets to lungs and liver) but 12 months on and a course of taxotere later I am very fit and it looks as though I might do rather better than that - predicting life expectancy really isn’t an exact science … We know I probably won’t see my grandchildren but I am making sure that we have good memories of this short time ahead of us. Sorry to waffle on and I don’t know if any of this helps, but if you can just live this day by day and help your mother to do the same you may well find you have a lot of happy days ahead of you.
BTW - taxotere is not fun but the effects vary hugely and it can be very effective. It shrank my tumours by 50% and some of the lung ones disappeared entirely.
lots of love and will be thinking of you
Barbara
Thank you for your posts.
It is good to hear from ladies that have done Taxotere. I have got to try and be more positive. My Mum deals with it in a funny way. She says it’s as if it’s happening to someone else. She doesn’t like talking about it. I feel like I am asking her things all of the time. She has never really cried in front of me.
Sometimes I feel like it would be nice to both have a cry together. Does that sound silly?
She has been really tired since her 1st Taxotere on Thursday and hasn’t slept very well.
Barbara thank you for your reply
Holly
It doesn’t sound silly at all. All I can say is that I don’t feel I can cry in front of my daughters because I still feel I need to protect them and be brave. Your mum may feel the same. You haven’t got to try to be more positive at all - you are entitled to be afraid and upset and to cry if you need to.
xx thinking of you
Barbara
Hi Holly
I don’t know if any of this will be helpful to you but I can relate in some ways to your post. My Mother also has Stage 4. She had bc 13 years ago, no lymph involvement and treated with rads plus tamox. We were hopeful for the future. Last summer she started to limp a little as the top of her leg was hurting. Her gp diagnosed arthritis. 4 months after that severe neck pain, gp said neck spasm. Around that time was her annual check with the onc. Scans showed bone (hip and spine), liver and lung mets. We were in shock. How did it all creep up like that. The first step was an op. on the fluid around the heart very scary but she got through that. She started FEC in Jan but changed to Tax after 3 as scans showed no improvement. Such a blow and morale plummeted. My Mum has just had her 6th Tax today along with hercep. The last lot of scans showed a reduction on the liver and lung stable. I have so far managed my tears in private, I know my Mum couldn’t handle seeing me upset and I want to be strong for her. It is so very hard. She is coping with the Tax but the side effects kick in after 3 days and the battle is tough. The most depressing aspect for my Mum is the dreadful metallic taste where everything she eats or drinks tastes vile. This was particularly bad after the last dose when for two days she didn’t even want to eat. I felt totally helpless and so worried about her. She managed to pull through it and had a ‘good’ week. We have found the one of the vitamin drinks tolerable and I try and put as much food and drink in front of her to encourage her to build her strength up again. She too says she can’t believe this is all happening. We take every day as it comes and make the best of the good ones by trying to go out somewhere enjoyable even if only for an hour. Somehow it seems ‘normal’ for a short while. We have found some strong fruit flavoured gum helps a little with the disgusting metallic taste, mint tastes foul to her.
Her bones have strengthened from the rads on hip and the bone strengthening tabs. She has also found good pain relief with the fentanyl patches which the Macmillan nurse recommended.
She has lost all her hair now but has a brilliant wig which she wears all the time. She says for her it would be harder to cope to see herself in the mirror and be reminded of the seriousness of it all if she didn’t have the wig.
I have young children and my Mum stays with us during treatments. I just try to keep everything as normal as possible. Some days, I do better than others! I have told my children that Nanny is having special medicine for her illness and have answered their questions honestly.
I hope the doctors can find the right combo. of treatment for your Mum that will keep it all at bay. I also hope that with the all the continued research and new drugs coming in, there may be something just around the corner that will help our Mums. I have found this site enormously helpful and gained strength from the information it has provided.
Thinking of you and your Mum
Lx