Hi I’m new to the forum so not sure what I’m doing - not too good at tech stuff!!!. Anyway wanted to post something about my experience of living with a pleural chest drain as I couldn’t find much info on the forums when I started looking for others living with this. I was diagnosed primary breast cancer in 2011 stage 2 after treatment all seemed well until developed cough in 2017. To cut a long story eventually diagnosed with secondaries to the pleural lining bones and liver may last year - I was very unwell at the time and thought there was no way back but following treatment that involved draining fluid from my lung with a permanent chest drain, carboplatin chemo and letrozole my condition greatly improved. I have since then enjoyed lots of travelling (you CAN fly with a drain - something that worried me!!!) I have just returned from a fabulous trip to vegas with no issues ( insurance a struggle but had it via MIA for £800). I have also returned to work part-time although still weighing up taking I’ll health retirement. I walk my dog daily and go to the gym when I feel able. My husband and I take care of the drain - draining the fluid weekly - as it gives us more freedom. I just wanted to reassure anyone who finds they may need a drain you can still have a good quality of life. I have lived with it for 10 months and was desperate to have it out and became increasingly disappointed when the fluid persisted but now I have learned to live with it and make the most of live whilst I feel well!
Hi Sarahlew,
I don’t have this particular problem at the moment, but I’m quite new to Mets, and who knows what the future holds! Just wanted to thank you so much for sharing, it is SO heartening to read someone’s positive experience. We all need a bit of encouragement sometimes! I love your can-do attitude. Good for you!
Thank you nicky and tatyana for your kind words. Life seems so bleak at the time of diagnosis and it’s important to know there is hope and life can go on albeit with a new norm!!!
Sarah xxx
Hi Sarahlew,
I’m new to this plural fluid build up as only got diagnosed with with a secondary to lung 2 weeks ago. I had BC in 2016 & only a year out of treatment May 18. Came on with breathing problems that started in nov 17. Breast care been investigating me since January 18 & it’s taken this long to get a final diagnosis. They told me twice nothing sinister. I’m in hospital having my second chest drain due to lynfrangitus?? They are hoping to do a powder blast to seal the lining in between the plural & lung tomorrow. Reading your post is this something that will be a permanent thing for me as they have not really informed me of this yet? I’m due to start chemotherapy in tablet form on Thursday. I must say though you appear to be enjoying life & this has lifted my spirits as I’m due to go on a family holiday in May am hoping to be ok with this?
Sorry I’m new to this forum so still finding my way around the information. Lots of useful information.
Sandy
Hi sandy
Sorry for late reply been away over the easter. Your story sounds familiar to mine in that diagnosis of secondaries took a while. I hope the talc procedure went well how are you doing after that? . Hopefully that will resolve the issue of the build up of fluid for you now. The hope was that after a while of my drain being in the lining of lungs would Seal and the drain could come out I’m still waiting!!! Where are you going on holiday - if you are flying get a letter from your consultant saying you are stable and they are happy for you to fly for insurance purposes. Feel free to pm me if you want anymore info. Take care sarah x
Hi again Sarahlew lovely to hear from you it’s my 1st reply so must be getting used to this site. I’m off to have a chest x-ray today & then a meeting with the oncologist to see the state of play for starting chemotherapy tabs tomorrow. I’ve already had a 3 week delay due to this fluid. If you were to ask me honestly do I feel as if the fluid feels better the answer is no. However I am wondering if it’s the worry of everything.
Our holiday is to lanzarote Porta del carman staying in a villa with the family. To not make this holiday possible would be devistating for all of us.
Thanks for the tip
Cheers Sandy x
Clinic today after repeat chest x-ray says fluid back. As bloods ok they want me to start chemotherapy tabs tonight. Consultant thinks the treatment maybe the only relief I can get from the symptoms. She didn’t install me with much confidence on my pending holiday in May though. Thinks the airline won’t take me with fluid in the lung?
I’m gonna fight & try & prove her wrong.
Wish me luck Sandy
Hi sandy
Sorry to hear the fluid is still there - did they say how much ? . Chemotherapy can help to dry up the fluid but can take a few weeks - if your having a lot of symptoms from fluid - coughing, breathlessness , chest pain etc would they consider draining the fluid until the chemo kicks in to make things more comfortable for you?
When I had the permanent chest drain sited none would give me an answer if it was safe to fly - after I did a lot of research found there was no contraindication . I had my oncologist write a letter saying I was fit to travel and informed my insurance company of the drain - I didn’t inform the airline but did get stopped in security and they examined me - I showed them the oncologist letter and all was fine. I have flown 5 times since with no issues. I suppose the issue would be if your condition is stable by the time your holiday comes around. It can be so frustrating and upsetting as spending time away with the family is so important and precious to us isn’t it . I really hope the chemo helps I know it has with some ladies.
Hugs Sarah x
Just wanted to add I drained 1.5 litres of fluid from my lung initially the amount after chemotherapy and now drain 300-350 m&s a week xx
Hi funny face
Gosh you have really had a tough time. Your story gives some hope that you can live with this for many years - although I know not without pain and sacrifice at times. My hope is that I see my daughter graduate and my youngest on her way to uni. Wonderful news about your grandaughter!
The disappointment is huge when the illness affects plans - but when life gives you lemons make lemonade! .We had to cancel a trip to vegas for our 20 year anniversary last year we went on a cruise to Norway instead (as thought couldn’t fly!!).
I thought I would never make it to vegas ( on bucketlist) and i was distraught as felt cancer taking control of my life but went in marich and had great time I feel so lucky to have done it. Will keep everything crossed for your trip x
Hi sarahlew,
I’ve had the lung drained x 2 in the last couple of weeks & that’s what delayed my chemotherapy treatment. They did the powder (pleuradises) on the 2nd one. To be honest I only really get breathing problems when goon up stairs & doing too much walking. I’m usually a fit person so this more resting than activety is doing my head in. I’m wondering if I should consider a wheelchair so my family can take me our further afield when the weather picks up?
The consultant didn’t say how much fluid was back (had about 900ml) removed last week. I’m just hoping like she said & you have said hopefully the chemotherapy treatment will slow the production of the fluid down.
Day 2 of tabs early days but feel ok.
Thank you for keeping in touch it really helps having someone who understands.
Sandy x
Wow funnyface if you can go through all that & sound as upbeat as you do I applaud you.
Makes my fluid problem seem quite small.
I think if I’m honest it’s because the hospital delayed finding this secondary diagnosis, took 3 months & I feel let down they let my breathing get so bad before treatment. Plus they never really explained this fluid to my understanding. I’ve actually found out more from sarahlew than the hospital. Having an understanding of the problems helps you to face them head on, don’t you agree?
As for making memories I’ve had some wonderful holidays but still want to carry on having amazing holidays. I will fly if possible but if not then the holiday destinations will have to change.
I’ve got 2 beautiful granddaughters age 3 & 6 & want them to have me around for a long as possible. We also are celebrating 35 years of marriage this October. Still discussing what we want to do, watch this space.
Take care of yourself FF
Sandy
I have never had to use a wheelchair so far. I was very fit before diagnosis ran a lot etc and have tried to continue to be as active as possible. Try some gentle walking on the flat I found hills challenging when I had a lot of fluid there. Keep your energy for things you enjoy so no housework???
I have today done some gentle excercise & walking & will say so far feel ok. I know it’s not good to sit around & it’s really not like me. It’s just with the last two stays in hospital really took it out of me.
I believe now I’m on treatment should feel more relieved once it’s zapping those cells.
Plus the sun is due out tomorrow, have a lovely weekend Sarah xx
Just got home from nursing 30 year reunion! Yes you can still party and enjoy???. Have a good wend too xxxx
Hi all with pleural effusions and or lymphangitis I’m wondering what treatments you’re on.or have changed to that have helped dry up the fluid. I’ve had pleural.effusions, chest infections and a pericardial effusion most of the winter and am now in hospital very out of breath, I was on a clinical trial of herceptin capecitibine and tucatinib or placebo but after 5 sessions that doesn’t seem to be working so in going to have to change any ideas? Thanks to all
Hi
I had 6 courses of carboplatin iv chemo letrozole and a permanent chest drain sited. Initially I was draining 1.5 lites a week - following chemo draining around 250mls a week now. I don’t have any symptoms from fluid now as it has reduced and I drain it every week . Hope they can try something to ease your symptoms soon.
Take care x
Hi sandy was wondering how your doing? Hope things have eased for you a little
Sarah x
Thank you so much for posting!!! ? I am having mine inserted tomorrow following a failed pleurodesis ?? and you have made me feel much better! ??
Hi baby star
Hope all goes well today for you . I found I was uncomfortable for about a week after so keep on top of analgesia I had oromorph.
I had my chest drain for 18 months and although daunting at first it soon becomes part of your routine . I have had mine removed now as after starting everolimus I had an infection - hoping that re commencing everolimus will help dry fluid out. Feel free to pm me if you have any questions.
Good luck Sarah x