Hi there,
I was wondering if there is anyone out there with malignant pleural effusion.
I was first dignosed with BC in February '07, had a WLE no lymph nodes involved and 15 sessions of radiotherapy.
In June '09 was dignosed with magnant pleural effusion, biopsy showed that my lungs were clear of cancer.
Had chemo 3 FEC and 3 Tax which finished on Oct '09
Would be lovely to hear from anyone in a similar position.
Thanks
Chris
Hi Chris, Sorry I cannot help but replying to you so that your post is bumped back up the line. I have bone mets and have had for over 10 yearss. I do get breathless but no diagnosis of lung problems so far. Hope someone sees your message and repleis soon, from Val
Hi Val,
Thanks for your reply.
The chemo seems to have done its job and I feel alot better. the fluid has reduced, although there is still small fluid around the bottom of my lung. There is some fluid in my stomach which scan has indicated there is no spread to my liver. but there is a lesion there. So will have to wait and see.
I’m seeing the oncologist on the 26th so fingers crossed.
Thanks again for your reply.
Chris
Hello
I have a malignant pleural effusion I was dx with this straight off in March 2007 I had the fluid drained off and also had 6 sessions of FEC.
This gave me a lot of releif from the coughing and breathlessness
It wasn’t until a year later that I started getting breathless again and then they drained my right lung. I also had fluid around my heart which they drained off as well.
I am still having problems with my lung mainly pain and sometimes short of breath. I am on several painkillers and steriods which have helped.
I also have cancer in my liver as well
What chemo are you having?
I am glad that you are feeling a bit better
Caroline
Hello Caroline,
My dx was stage 1 with no spread - my surgeon told me to go on and have a happy long life. What a turn around hey?
It took them 6 months to dx the spread to the pleura - they just could not believe it.
I was under the lung specialist and they drained the fluid which was 2.5 litres. Unfortunately for me it was back within 3 days.
I saw the oncologist who organised chemo of 3 x FEC & 3 x Tax which I finished 21.10.09.
The last ct scan shown the reduction of fluid, but there is still fluid at the bottom of my right lung. I have a spot on the lung and a small spot on my liver, but they cannot find any evidence of the spread there. obviously concern because of the swelling in my stomach which has reduce and they thinking about draining it off.
I still have pain which i’ve been advised is probably the fluid pressing on the nerves. I take pregamblin and co-codamol for the pain which seems to be working for me.
I was like you very breathless but never had the cough - I feel quite well.
Thanks for you reply.
Love & best wishes
Chris x
hi girls
a similiar problem but not the same. i was diagnosed two years ago april, had mastectomy and have secondaries in bones
like you i was happily tottering around until near christmmas my tummy swelled that much i looked 9 months pregnant.
i was told i have ascites in the lining of my tummy, which needs draining all the time. it will improve when i start chemo, but i cant seem to pick up enough to start it, ive had lots of viruses and infections, i now have drain left in even though they dont like doing it, but it is so much more comfortable
when i was first drained i lost 5 litres in one go and then a regular amount each day, and it is so uncomfortable like you say
another thing i was wondering do you have problems getting the drainage done, i have to phone everyone to sort it out, theyre doesnt seem to be anyone at our hospital who will take responsibility. and once i have bag in and go home, district nurses dont want to touch it saying theyre not trained. i end up having to phone everyone, its a nightmare!
hope your all improving and things are getting better x
Hi Everyday,
I like you was walking around look very expectant. The fluid has subsided since the chemo, but not gone completely. I don’t know if yours seems to go up and down but mine does. Its better when I not active which is very hard for me.
Before the chemo I couldn’t do anything and was very breathless. Have they offered you any other treatments apart from draining the fluid off? I spoke to the MacMillan nurse and she advised me to ask the oncologist if there were any other treatment available to reduce the fluid. Don’t know if anyone else is in your position to ask. I would have thought the onc would be responsible for getting the drains sorted.
hope you’re doing ok and let me know how you get.
Best wishes
Love
Chris
xx
hi chris
they think it will get better, when i start chemo, just wish i could get well enough to start it. i only see my onc now and again, and the drain thing is a regular problem at the moment,
so they put it in in the xray dept, and then its left until i sort it out. but no one gives me an appointment, and they all pass the book on whos going to do it!
thanks for your reply i hope you continue to do well, and fluid doesnt build up to much, because its an awful feeling.x
Hi everydaymatters, It saddens me to see you have to seek out help with your problem and no one seems to want to know. This is the type of thing no-one talks about and it is just not on. I now feel angry about it too. Is your BC Nurse aware of your problem? Is she any help? I feel less breathless now that my recent chemo is over but I seem to have problems with a bloated tummy and they have checked things out for me but can find nothing seriosly wrong. But it is a day in-day out problem and has been going on so long that I begin to think it is something I just have to live with. A friend said today perhaps I have a food intolerance of some sort. But I cannot pin it down to anything specific. I thought it was the pips in tomatoes, then fatty food and so on but cannot pinpoint the cause ( I do have IBS and diverticular disease) but I even wake up in the night and have to make a run for the loo. I know it is not the same problem as you…but I do feel that I am somehow just left to get on with it…I have been following your posts…sending a hug to you, love Val.
Hi - interested in our posts. I was DX in December 1997, had mastectomy and chemo then 5 yrs on Tamoxifen. 2005 diagnosed with secondary in ovary andd pelvic. I too get a lot of fluid round lungs and heart area. I have had 4 courses - 9 at a time -of Taxotere and Xeloda. This reduces fluid and the tumour.
When chemo stops everything starts again. October last year was so ill went to hospital as emergency and drain put in. 7 litres drained away and when i got home had lost over 1 stone. I looked 9 months pregnant and none of my clothes fitted. I do have every faith in my oncologist and he says that there is no other treatment. I don’t have problem at hospital getting attention - BCN sorts everything for me. it is a small oncology unit and they know me very well. I am a young 60!! and feel my life ahead of me is just chemo after chemo. It becomes more difficult each time. I just hate it. On chemo just now - 5th tomorrow but don’t know how many I’m getting. Had scan on Friday to see if things were improving.
I get breathless, light headed and very tired- ,my energy levels are very low. I have 2 grandchildren 3 years and 15 months who I love looking after but do get tired.
Take care everyone
Sheila
Hello Cammie,
Just wondering how you are and hope you’re chemo is working. Did you get your results from the scan?
I know from my own experiences how painful the fluid is which in my case affected the nerves. Even through the fluid has subsided with the chemo there is still something there which presses on the nerves. But the pregamblin adn painkillers are working for me.
I hope evderyone is doing well.
Best wishes
Love
Chris
x