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Lung secondaries- newly diagnosed

23 REPLIES 23
Salzie
Member

Re: Lung secondaries- newly diagnosed

Sorry what is lymphangitis?
Mollymop
Member

Re: Lung secondaries- newly diagnosed

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

Amalfi
Member

Re: Lung secondaries- newly diagnosed

I went onto capecitabine. 

 

HelenAquarius
Member

Re: Lung secondaries- newly diagnosed

Hi Amalfi. 

Thanks for sharing this. What was the chemo you were on that helped your breathlessness?

 

thanks

helen

Amalfi
Member

Re: Lung secondaries- newly diagnosed

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.

Verity
Member

Re: Lung secondaries- newly diagnosed

Helen, I suppose at least they aren't taking at chances. I hope your breathing improves with treatment and that chemo isn't too gruelling second time round. X
HelenAquarius
Member

Re: Lung secondaries- newly diagnosed

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!

Helen xx

 

Verity
Member

Re: Lung secondaries- newly diagnosed

Hi stresshead,

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.

xxlucy

stresshead
Member

Re: Lung secondaries- newly diagnosed

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

Verity
Member

Re: Lung secondaries- newly diagnosed

Katie,
So sorry you have been diagnosed with lung mets like me. One thing I'm learning is everyone's treatment is individual so it's hard to advise. I saw my onc on Tuesday and now have a plan. I feel so much more hopeful now. It also gave me something concrete to tell my kids. We are all getting our heads around things. I've joined the private group now so you may want to do that? Seeing as our situation is similar it would be good to support each other. I know you have a two week wait to see your onc. but hopefully support and a plan ell follow. Take care
Lucy
Carolyn52
Member

Re: Lung secondaries- newly diagnosed

Welcome back Katie. Sorry you have had to rejoin after so long but most of us here felt the same way when we were dx with secondaries.
I normally lurk on bone Mets thread and at present don't think I have lung Mets but once you see the oncologist in May ..will be able to focus on a treatment plan and you should then be a bit more informed .
There are a lot of experienced ladies here that hopefully will reply with some good advice and support.
Keep reading and posting as there is always someone awake and reading the posts so you are not alone.
Hugs xx
Katiej
Member

Re: Lung secondaries- newly diagnosed

Verity I am almost identical haven't met oncology team but do feel positive it happened when I had BC in both my lungs then disappeared with Herceptin medics are very puzzled as to how it's come back but looking at comments it's more common than I thought
Feel lucky I had pneumonia as don't think it would have been picked up
Take care will let you know what treatment oncology team come up with app 28th may
Katiej
Member

Re: Lung secondaries- newly diagnosed

Your comment very comforting
Katiej
Member

Re: Lung secondaries- newly diagnosed

Hi this is my first revisit after going through breast cancer in 2007 finishing treatment 6 years ago including Herceptin for 18months , having pneumonia beginning of this March X-ray showed shadow biopsy etc followed and told today that I have metastasis in both my lungs and 1 lymph node in my thorax
Ave appointment with oncologist 18th May
Still HER 2 test not back as first BC was HER 2
Can anyone give me any advice please
Many thanks
Verity
Member

Re: Lung secondaries- newly diagnosed

Gigli, I don't usually read the posts on here to my husband but had to read yours. It's gives me lots of hope and brought a smile to his face. 😀. Reaching your daughters GCSE milestone is just so fantastic. My children are almost exactly the same ages as yours were so it just makes it all feel more possible. As I struggled up the stairs with my breathlessness, today, the thought I might be able to lead an active life going forward is one to hold onto. Thnkyou for all your posts ladies, it's so good to hear that life just goes on...
gigli
Member

Re: Lung secondaries- newly diagnosed

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

Verity
Member

Re: Lung secondaries- newly diagnosed

Helen, your post is especially helpful. I agree with your approach and very much did this last time. I'm hesitating only because I don't have a 'plan' yet. It feels important to communicate something concrete. But I may just go with what you said to yours. Also my oldest is about to do exams and it feels like terrible timing. I will give this some thought while I'm in hospital. My mum has guessed now and so have a few friends. I just need time to get my head around things before I face the concern and worry of others. Xxxverity
HelenAquarius
Member

Re: Lung secondaries- newly diagnosed

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.

 

Helen xxxxx

 

Glo
Member

Re: Lung secondaries- newly diagnosed

Hi Verity,
Sorry you have had to join us!
I was diagnosed in Sept 2010 with secondaries from the start- multiple lung mets. I was given letrozole which I took for 4 years and they completely disappeared! Things have changed a lot since then (that's for another time!)
I also got a pleural effusion in sept 2015 which I had drained and then had a pleurodesis which prevented any reoccurrence!
There are lots of treatments available!
Good luck with your treatment
Glo xx

Verity
Member

Re: Lung secondaries- newly diagnosed

Thank you ladies, I've also applied to join the closed group as you all seem to post there. Marion, it is really good to hear how you are doing. The thought of managing a chronic rather than terminal condition seems so much more of a possibility now that I have read some the secondary posts on here. I have a renewed comittment to self care and hopefully this will help me cope with treatment ahead. I know that when I have a 'plan' I will feel more confident about talking to my kids. Meanwhile my chest drain is a bit grim but I'm hoping the symptom relief will help me get back to walking and swimming- activity I enjoy and know is good for me. I'm going to have to brush up on my original diagnosis- can't remember all of it. I know it was oestrogen + and that my nodes were affected- hence chemo, radio and tamoxifen for 5 years. Thank you. Xxx
Carolyn52
Member

Re: Lung secondaries- newly diagnosed

Verify I'm so glad that Marion has replied to you with such a positive attitude and I'm hoping that other ladies here will pick up the thread and support you.
You will b in a very dark place until your treatment plan is in place but once you know what's in the pipeline for you ...it will settle down your fears.
Once secondaries are dx ...it's always panic about the dreaded chemo again but I was dx last October ..just Adcal calcium tablets , letrozole ( hormone pills) and a bone injection monthly ( denusumab ) so far.
Hugs xx
MarionP
Member

Re: Lung secondaries- newly diagnosed

Hi Verity,

 

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.

 

Marion

 

Carolyn52
Member

Re: Lung secondaries- newly diagnosed

Hiya verity. As I have just dipped in to your thread I will welcome you to the lovely family of ladies here. I'm afraid I don't have any experience (yet) of lung Mets as mine are still in the bones nibbling away!
If you use the search box and type in lung mets you might find sone older threads which will help.
There will b ladies here that will be able to answer your concerns .
You have to trust your oncologist to plan the best treatment for you.
In the meantime; accept all the support and help you are offered from friends and family and its going to be difficult for your children as they are so young but I'm sure once they accept what you tell them ...will be more than happy to pitch in with things!
Sorry not much help but loads of hugs xx
Verity
Member

Lung secondaries- newly diagnosed

Hi all, I frequented this site a lot following my diagnosis and treatment in 2008. Like many, I drifted away as my recovery gained momentum and the welcome pressures of life resumed. Sadly I have been re- diagnosed this week and am keen to nurture this valued source of support again, as I restart the circus that is cancer treatments. I have yet to meet with my oncology team and have no clue what kind of treatment plan may be in store. I'm trying not to read too much about lungs as it doesn't sound great to me. I'm currently in hospital having lung fluid drained and hopeful this will bring symptom relief from my increasing breathlessness. My main worry at the moment is how to drip-feed all this to my 12 and 17 year old children who have already had to face my cancer treatment once in their short lives. The pain of not being there for them is truly unbearable. Any advice gratefully received. X Verity