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Living with pleural effusions

19 REPLIES 19
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Community Champion

Re: Living with pleural effusions

Hi Jenn, I'm sorry I couldn't post sooner. I saw your message this morning but I was headed out the door for work. Then after work I had a root canal. I just got home then few minutes ago. I live in the USA and we are behind you by 5 hours. 

I have lung mets and have had them almost 13 1/2 years now. I have only ever had very small pleural decisions a n d never noticed any difference.I do know that if your lungs get fuller you might need them drained..Sometimes you need them talced. I haven't had ribociclib but have had palbociclib. They are very similar. At my 3 month check-up palbociclib hasn't done much, but by 6 months it locked butt! I did become majority short if breath two different times. Once was bc tumors had grown and I needed radiation. Then from the radiation I got pneumonitis. This is When your lungs become inflamed and swollen. After a few weeks I was fine. Then years later I was on gemcitibine and after 10 months I had a toxic reaction to it and couldn't even walk to the bathroom without grasping for air. I was taken off of it and my body bounced back. 

 

DO CALL YOUR DOCTOR!  There is no way of knowing what is going on without speaking to him/her. DON'T PANIC!!

 

Hugs, FF

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Re: Living with pleural effusions

Hi, this is my first time posting, I am really suffering with breathlessness and think it may be pleural effusions, but my oncologist hasn't mentioned this. Does the drain help with the breathlessness as right now I am totally struggling to do anything, and not sure how to get through each day any more. I do try and plan nice things, and think positively for the future, but right now it is really hard. Any advice would be amazing. I don't know anyone going through this, so I am hoping joining and posting in these forums will help.

I was diagnosed in Jan with secondaries in my bones and lungs, so still in some shock over it all. Am on letrozole and ribciclib, but this doesn't seem to be working, but maybe 2 cycles isn't enough.

 

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Re: Living with pleural effusions

I had a drain fitted during my chemo treatment of carboplatin iv without complications x

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Re: Living with pleural effusions

I'm also on a diuretic too which has really helped. They showed my a chest x ray taken a few days apart and the diuretic had really helped to reduce the fluid before I had the drain fitted. 

 

Vicky

Member

Re: Living with pleural effusions

Thank you Vicky, that’s really helpful. I’m seeing my oncologist tomorrow and want to discuss this with her

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Re: Living with pleural effusions

Hi there

I have a drain fitted and am on weekly Paclitaxol.  It's hoped that the chemo will help to reduce the fluid too.

Hope that helps.

 

Vicky

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Re: Living with pleural effusions

Can anyone tell me if it’s possible to have a drain fitted and have chemo at the same time?

They are struggling to control the effusion, despite having pleurodesis last time. Oncologist is swapping me onto Cape tablets, but I feel I’m losing treatment time waiting for the fluid to go. She seems reluctant to give chemo with the drain in situ

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Re: Living with pleural effusions

Thank you Sarah and everyone 😊 Hope and Faith will be the mantra. At least I know that I’m not alone thank to you all xx
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Re: Living with pleural effusions

Vicky yes I can identify with what you said about family - for me that is the most harrowing heartbreaking part of all this seeing the worry and concern on my loved ones every time I cough. You seem to have adjusted to life with the drain hope your treatment has good results.
Funny face you really are inspirational keep smiling😊.
Best wishes Sarah x
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Re: Living with pleural effusions

Scrummy you really are going through the mill - I really hope you start to feel better soon and your treatment has positive results for you. I have always been a positive person trying to look for solutions to problems but I was very unwell at the time my drain was fitted and bedridden for 2 weeks that was a very low dark time for me as I thought there was no way back and I was on a slippery slope. It is far easier to be positive when you feel physically well. As soon as I felt physically better I wanted to make the most of every moment!😊. Keep hope and faith that things will improve with treatment. Take care sarah x
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Re: Living with pleural effusions

Hi Scrummy 

I had my rocket drain fitted in December and am learning to live with it.

My secondary diagnosis was 2 years ago and I have worked since then with a relatively normal life.

I am 47 and currently on paclatoxal so signed off but desperately hoping I can return to work in the Spring. 

I'm hoping that the chemo will help reduce the fluid and I also take a diuretic.  It isn't too intrusive in my life and I'm draining twice a week and the amounts I'm draining are reducing. 

I totally understand your head is all over the place but things will settle to a new normal. We all understand the living in limbo and not knowing what's ahead. I'm angry that my family is affected again and the upset and worry it causes them. Life really isn't fair sometimes. 

Come and have a rant on here whenever you need to. It's the only place where people truly understand what you're going through.

Best wishes

 

Vicky

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Re: Living with pleural effusions

Wow you have gone through so much Funnyface it gives me hope. We are all so different yet have this common bond. Cancer absolutely sucks !! I will be thinking about you as I continue my treatment. Hugs xx
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Re: Living with pleural effusions

Your right Vicky and I understand the anger you must be feeling especially around family. I very much doubt I will be returning to work. Been signed off since October when I got this bombshell of a diagnoses. So angry and becoming very tired of it. I want to rant constantly about the unfairness of it all!! Not in a positive place but this may change. You sound positive even with everything you are having to cope with. I’m hoping for positive news on Friday after a meeting with the thoracic team. That would give me a lift. Thanks Vicky xxxx
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Community Champion

Re: Living with pleural effusions

We all go through the anger and resentful stage. I was 10 years out when mine came back. You have a lot going on. My right lung middle lobe has been collapsed since they found the Mets, 13 years ago. Then the upper lobe collapsed. The upper lobe reinflated after a couple of months of a new treatment. I had ended up on O2 and was able to get off of O2. This was 2012. Then in 2015 ended up on O2 again. Changed treatment and got off of it again. I wish you the best and hope your treatment kicks in! FF

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Re: Living with pleural effusions

Hi Scrummy 

I had my rocket drain fitted in December and am learning to live with it.

My secondary diagnosis was 2 years ago and I have worked since then with a relatively normal life.

I am 47 and currently on paclatoxal so signed off but desperately hoping I can return to work in the Spring. 

I'm hoping that the chemo will help reduce the fluid and I also take a diuretic.  It isn't too intrusive in my life and I'm draining twice a week and the amounts I'm draining are reducing. 

I totally understand your head is all over the place but things will settle to a new normal. We all understand the living in limbo and not knowing what's ahead. I'm angry that my family is affected again and the upset and worry it causes them. Life really isn't fair sometimes. 

Come and have a rant on here whenever you need to. It's the only place where people truly understand what you're going through.

Best wishes

 

Vicky

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Re: Living with pleural effusions

I do want to smile again Funnyface. I thought I was strong and a fighter but this has floored me. I thought I’d beat it first time so feel very angry and resentful that it’s back! Just don’t know what the future holds........Hugs xx
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Re: Living with pleural effusions

Sarah Lee thank you for your response. It is very difficult. I had my drain fitted mid december due to the amount of fluid build up. Also have multiple blood clots so inject daily. I’m on Letroze, Palbociclib, Zoladex injection monthly. I was only told last week that it is in the lungs also. This was by a general doc in A E as he printed of the histology report from 12/12/18 that had not been shared with us All a bit of a mess. The lung is also complicated by the fact that they created a pneumothorax when they put the drain in and it is partially collapsed? A “tethered lung” has been mentioned a number of times. Told I can’t fly 😢 Will know more Friday after meeting with the thoracic team. You sound so positive 😊 There’s hope to get rid of the drain if you managed it. Glad to hear you have a new normal. I appreciate your quick response to my plea. If it wasn’t for the drain and breathlessness I would probably have the strength to manage the liver / lung cancer / lung clots etcetera. I’m on my second cycle of the oral chemo and as you say it may help reduce the amount. The district nurse comes every other day to do the drainagage. I am not confident enough yet to do the draining yet..... Thanks and Hugs xx
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Community Champion

Re: Living with pleural effusions

Scrummy, I'm sorry. I have lung mets but no experience with draining. I have had small PE, but a change in treatments has amalgamated them up. It is amazing what becomes daunting for each of us. We each are so different in what drags us down and how we handle things. No right or wrong! No judgement! I just like everyone to find their smile again.Hugs! FF

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Re: Living with pleural effusions

Hi scrummy
I have a similar diagnosis to you - diagnosed 2 years ago. It is completely overwhelming being given that diagnosis and also having to deal with the chest drain. Give yourself time to adjust and try not to think ahead - I could only think a few weeks ahead initially now I do make plans in 3 months stages (around scans!). How long have you had your drain fitted? Have you or someone in your family/friend been taught how to care for the drain I found once my husband and I took care of the drain ourselves I felt more in control and gained confidence and freedom which allowed me to enjoy lots of holiday's abroad. What treatment are you on chemotherapy and hormone trestment (if you are hormone positive ) can help dry up the fluid so you may find you won't need to drain as often I went down to once a week which is more manageable. 10 months after having my drain I felt well enough to return to work.. I did used to hate doing the drain as it made me feel an invalid but once it was done in would get on with my thing and forget about it and it soon just became part of my daily routine you learn to find a new norm - that being said it is so hard letting go of some of the old. I had the drain for 18 months. Make nice little plans like going for coffee with friends so you have things to look forward to may help.
Hugs Sarah x
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Living with pleural effusions

In October I was diagnosed with pleural effusions in both lungs, liver cancer, lung cancer. Pleurodisis done on the right and a rocket drain fitted on the left lung. Breathless still an issue. Draining 3 times a week on average 450ml. I’m 51 and feel completely trapped as I can’t get away from it! Got a thoracic appointment Friday to discuss the drain etc. Feel like I can’t live with this both the drain and diagnoses. Can’t work anymore and feel like my life has come to a standstill. Not a great talker but need someone who gets it. HELP