Verity I was diagnosed with lung mets in February 2013. My initial retun to chemo (had already had FEC and Taxotere to shrink the primary) was vinorelbine which did not work and I had slight progression. However Capecitabine and Lapatinib did work and I was stable on that combo for 18 months. I then switched to weekly Taxol last year and have been stable on that too. I have Herceptin every three weeks and also take Tamoxifen.
I am well in myself and have an active lifestyle. My dog (Molly) is the love of my life and we do lots of walking. I have two sons aged 18 and 15 who were 14 and 11 at the time of orginal diagnosis. I am determined to see them grow up - I eat a low sugar low carb diet and get plenty of fresh air and exercise. I have been a vegatarian for many years.
I will be thinking of you and wishing you well xx
Thanks for sharing this. What was the chemo you were on that helped your breathlessness?
I've got lung and pleural secondaries. Last summer I was very breathless but my lungs where still responding to treatment and the onc didn't know why I was breathless. He decided it was a touch of lymphangitis. He gave me steroids and they definitely helped. I then went on a new chemo and it cleared upcompletely. I'm starting to feel breathless again but I know I have progression. Just waiting to start a new treatment.
This is very interesting as I too haven't been confirmed with lung secondaries but they are so suspicious that are starting me on chemo for it after 5 months of tests and thinking it was asthma.
They think mine are in the airways but can't see it in ct scans nor after a broncoscopy but I am so breathless I can't walk far at all. Maybe we'll start the mystery lung mets club!
My lung lady said it could be the cancer or chronic bronchiolitis caused by the chemo I had 9 yrs ago - great!
I'm calling mine lung secondaries, but pleura is probably more accurate. I have just been discharged from hospital following the same treatments you describe. I found it all quite painful and my breathing is better but still not right. I'm sorry to hear you are on oxygen. My understanding was that once the fluid is removed, we should be able to breath better. But the pleuradesis stiicks the lung linings back together and stimulates an irritation similar to chest infection. I'm hoping mine improves and that yours does too. It's horrible not to be able to have a walk or do some gentle exercise, things that feel like taking care of yourself - because of being so breathless. Take care.
Hello ladies, have read this thread with interest as i'm not sure where i stand on lung mets. I have skin mets and about 6 weeks ago was getting very very breathless. Long story short i had pleural effusion. I had 2 chest drins and pleurodesis and have started on a new chemo (carboplatin).I am a little better bt have to rest totally or get ot of breath and i have home oxygen. Important thing sems to be to put up with breathlesness for while so i can have chemo as this should also help with the fluid build up. The cytology report showed cancer in the fluid and i have been told i have mets in the plera but not the lung...does this sound right? also been told i may have bone mets, spine and pelvis so things not good at the moment. Any advice would be most welcome. x
Hi. I was diagnosed 3 years ago with secondaries to the lungs. My daugher was 12 and son 18. I told them everything from beginning. I had not had primary so it was a huge shock to the whole family. 3 years on and I am very well - running and cycling and live a very active life. Nothing has changed and we don't really talk about it now - maybe when an appointment is due. We are all getting on with our lives. My daughter has her GCSEs this summer and I didn't think i would see her do them and we have just bought her prom dress. There are plenty of treatments out there and options. Keep strong x
Hi Verity, I'm bone mets and awaiting lung mets diagnosis for shortness of breath but it may be some other lung disease, they just can't figure me out yet.
i am completely with you on the kids thing, mine are 11 and 14 and went through it all 8 years ago too.
I have been relatively open with them, who knows the best way to handle things ?
But I knew they would suss out my emotional state and be confused and scared and pick up on things they heard me talking about so I told them straight away the cancer had come back and that this time I'll be on medication for ever and sometimes poorly and that it's not something the doctors can cure at the moment but there is hope that some new drug will come out one day.
Communcation is the thing, as you never know what kids are thinking. Their fears are so different from ours and their understanding so different too. Whilst we adults can chat to friends and cry on their shoulder, children dont tend to do that with friends. They want to be as 'normal' as possible to their peers so many won't tell any friends about it for fear of being labelled 'the kid with the mum with cancer' and hence bottle it all up. So I talk about appointments, tell them what drugs I am having so they understand. I think mine can handle this and are very grounded and happy children.
We have a free councilling service in Berkshire which goes to the school and does one to one sessions with them throughout the period of illness and beyond, mine start next week and are keen to go so hoping it will give them the chance to explore stuff. Maybe you could consider this if something similar exists in your area?
I had a big fear over what they would think would happen after I die as we are not a religious family and so we have talked about ideas of what happens after death and it's been really enlightening.. They have their views and it has been good asking others what they think and sharing this with them. We don't need to know all the answers but talking with them including being open about your own fears is how I have approached it and all is good.
I understand my approach is not for everyone and there probably is no 'right' way but I'd definitely talk to a councilling service who knows about how kids deal with this stuff as they can guide you.
So sorry you had to join this club but you've come to the right place if you need support.
I was diagnosed with lung mets at the end of October last year (originally primary dx was in 2003) so I have a bit of an idea how you are feeling. The first thing to say is that it's not an automatic death sentence any more, there are lots of people living with this condition. The second is that once you know what your treatment plan is, you'll feel more in control.
The pathology of your cancer will help determine treatment. My cancer has the same pathology as my primary (ER+, PR+, HER2-). It's normal for it to stay the same but it can change so it's worth asking for a biopsy if they haven't taken one already.
My treatment so far has been Zoladex (to shut down my ovaries), Anastrozole (to stop my body producing oestrogen), Denosumab to stop bones breaking down and five sessions of radiotherapy (as a little bit of cancer appeared in one of my vertebrae). After a couple of months on the treatment I was no longer coughing and much less wheezy / breathless and my most recent scan results showed that not only had the cancer not advanced any further, it had shrunk in places.
So at the moment, I'm in a much better place than I thought I'd be six months ago. Hope this gives you some reassurance and good luck.