PleurX catheters +/- a talc pleurodesis for bilateral pleural effusions.

[Anneemay]

Just thought I would give an update of how and where I am with my treatment in case anyone else is going through similar situation. I'm now just over 2 weeks post insertions of bilateral PleurX catheters and hubby and I are now managing these ourselves at home twice a week at the moment. I'm virtually asymptotic with regards to the breathlessness and although I have a little discomfort with the catheters this is manageable with analgesia. I am seeing both my oncologist and thoracic surgeon next week and providing all is okay we are hoping to book a few days away in Devon the beginning of May. A couple of months ago I would not even have considered this possible as I was struggling to climb the stairs at home but now I can breathe and trying to get back to some form of normality. Bring it on .........Yes Thanks for the support everyone. Ann xx

[Anneemay]

Thank you Carolyn for your hug and thoughts it is much appreciated. I know that I wrote a bit of a rant but I did feel better after I had posted it. Today is another day the sun is shining and now that I can breathe better after yesterday's intervention we are going out for a stroll around our local country park. Spring is in the air the blackbirds are starting to nest in our garden and I have my positive head on today. 😀 Ann xx

[Carolyn52]

Hiya anneemay.
Sorry you are having a bit of a hiccup with everything.
Just thought I would send u a hug and thinking of you.
Xxxxx

[Anneemay]

Just thought I would update you on my progress as I am now 3 weeks post surgery. Last Thursday I became pro- active as I knew that my breathing was steadily getting worse, so I contacted the lung specialist nurse at the hospital I was being treated at for my secondary pleural cancer, as I was unable to get a GP appointment till the following Monday. I talked to her about my concerns and so she liaised with my GP and hey presto managed to get me an emergency appointment at 6pm that evening. I had a CXR the following morning which confirmed that I had bilateral pleural effusions again and the specialist nurse after seeing the report with a consultant arranged for me to go to the amblutary care unit for ultrasound and pleural tap today Wednesday. She also advised me to attend A&E if my condition deteriorated over the weekend and before attending the unit. I really struggled at home the last couple of days and was not able to sleep but I couldn't face going to A&E so just stuck it out at home, thank goodness for my very supportive husband. I have been to the unit this morning and they have drained 1.5 litres from the left side, the consultant said that there was some fluid on the right side but due to the amount aspirated from the left he felt that he could not justify or risking taking more fluid from me today. 

I will be seeing my thoracic consultant at Guys on Friday morning for my biopsy results and follow up from the previous surgery. She has had my CXR report forwarded on to her so is aware of my ongoing problems and I realise she has not got a crystal ball but I feel sure that if she had inserted a PleurX catheter on the left side as we had discussed pre surgery I could have managed the recurring effusion at home and would not have been in the situation I had to deal with over the last week. I am not sure now what she will advise on how to treat the left side as the right pleurodesis has not been a total success. I'm not sure whether I could cope with the uncertainty again as it is both physically and emotionally wearing. What to do it's certainly a dilemma. HELP.

[scratch]

Hi glo.just to say thanks for the quote from corrie..felt bit low today wil take that message on board.sharon.😃 x

[Glo]

Thanks! I'm preparing myself for chemo, only had 1 lot (taxol for 12 weeks) since diagnosis 5.5 years ago.
In the words of Roy Cropper on Corrie " being negative doesn't change the outcome but makes you feel worse along the way!"
Glo xx

[Anneemay]

So sorry to hear your tumour markers are up and hopefully your scan appointment will be with you soon. I have given myself a good talking too as I know that negativity is not good, and thankfully unlike you I have not got to have chemo at the moment. Trying to be more positive.😊 Good luck and hoping your scan result will be what you want to hear. Ann xx

[Glo]

I had stopped taking painkillers by the time I left hospital. Hopefully things will improve and your consultant will have the answers for you! It's good you've been able to have biopsies done at the same time, I too had this which confirmed I was still ER+ but HER2 neg.
Im pretty sure I'm having profession ATM as tumour markers are up and I'm exhausted, just waiting for a scan appt and then prob more chemo! Yuk!
Glo xx

[Anneemay]

Hi Glo I am so glad that your procedure was successful, unfortunately I am not so sure about myself. I had several X-rays prior to discharge and my breathing was better prior to discharge. It seems to have gone downhill since. I am still on a lot of analgesia including opiates to control the pain which I think is getting easier  every day but is like a nagging toothache it never really disappears. I normally have quite a high pain threshold but this is slowly getting me down. Then I can't help wondering if all the pain I am having has been for nothing as my breathlessness is just as bad as it was prior to surgery. I will be seeing my thoracic consultant next week for my biopsy results and will have another CXR so hopefully I will have some answers then. Thank you for listening, I'm just a little bit fed up with myself at the moment. Ann xx

[Glo]

Hi Ann, glad you've had your surgery and it seems to have been a success! I seem to remember after mine last Nov my breathing returned to normal straight away. They did check the re-inflation of the lung with several X-Ray's before discharge. I was tired as a result of 6 days in hospital but no after effects.
Hopefully your breathing will improve soon.
Glo xx

[Anneemay]

I am now 2 weeks post surgery following VATS biopsies and pleurodesis on my right side, they aspirated the left side and removed the drain prior to discharge. Dr said CXR prior to discharge was good which suggests to me that the lungs had reinflated. However I am still very breathless on exertion and although the nurse who contacted me today reassured me that this was normal, I can't help worrying whether the treatment has been successful, or am I expecting too much, too soon. Ann. Xx

[Anneemay]

That is so reassuring Glo, thank you for that. At the moment I am on Exemestane as I am ER+ but as I mentioned before have never been informed whether I am HER2 + or - so I will discuss this with my oncologist on Thursday. Thank you once again. Ann xx

[Glo]

If the pleurodesis doesn't work (I believe it has a success rate of about 85%) they can still put in an in dwelling catheter which you can drain yourself at home. Whichever way you will get relief! I asked for HER2 testing (it was done at my original diagnosis in Sept '10 but I wanted it re-done as status can change and my cancer seemed to have become more active than initially (I got 4 years out of just letrozole with lung mets!)
Good luck
Glo xx

[Anneemay]

That's brilliant Glo, my right side has been aspirated 4 times since dx last September each time draining 1- 1/2 litres last time was November '15. CXR done recently shows around the same accumulation. I know it sounds a bit strange but although I am anxious about the procedure generally, I am more worried that it won't work and that I will be still as breathless as I am now. I am therefore looking forward to next weekend!!! with some anticipation and a lot of hope. As far as I know I have not been tested for HER2 status, it has never been mentioned at my original BC dx in 2002 so I may query this when they take the biopsies next week. Ann xx

[Glo]

I had a pleurodesis in Nov 2015. I had two build ups of fluid on the left side, the first time it was drained (May '15) but it built up again. The initial suggestion was an in dwelling catheter you drain at home. I also wanted a biopsy taken of the pleural to test for HER2 status. The consultant said he would do the biopsy and if the lung looked likely to re-inflate he would do the pleurodesis.
He did the pleurodesis, I was in hospital for 6 days whilst the fluid drained fully, they checked it with several x-rays and it did re-inflated and I have had no problems since! No breathlessness, no return of fluid!
Good luck, just ask if you want any more info!
Glo xx

[Anneemay]

Thank you Carolyn that's good to hear, it is frustrating not being able to carry out just small tasks without becoming breathless. Ann xxxxx

[Carolyn52]

All the very best for next Sunday. I dont know much about it but I sat with my Mum in 1975 when she had a similar procedure and she was made very comfortable and got a lot of relief from the treatment. 

Carolyn xxxxxxxxxxxxx

[Anneemay]

Hi, hopefully within the next 2- 3 weeks I will have some relief from the increased breathlessness that the mets.in my lungs and pleura are causing. Providing there is a bed for me I will be admitted to Guy's next Sunday 21st for VATS and pleural biopsies with also PleurX drain insertions. They may also carry out pleurodesis on my right side as this seems to be the side with the most fluid in my pleural cavity. Has anyone else has these procedures carried out? I am a little bit anxious about these procedures but at the same time just want to get back some quality of life. I am also seeing my oncologist on Thursday with the results of the CT scan I had last week a base line prior to commencing further chemo, more anxiety but trying to remain positive. Xx Ann Xx