I was diagnosed with Stage 4 Lung Cancer in July 2015. Was put on Afatinb until July 2016 but drug resistance appeared in Apr 2016. Did 15 x RT to 2 nodules in May 2016 in the hope to be with Afatinib for as long as posible but unfortunately pleural effusion started to increase since end of June 2016. Stopped Afatinib on 27-7-2016 and was put on chemo (Carboplatin + Alimta) on 27-7-2016 & 18-8-2016.
On 3 Sep 2016, Tagrisso was given to me free of charge under a compassionate scheme so I Chemo was quit even though it worked for me. CEA has dropped from 24 on 2 Sep to 6 on 14 Oct.
On 3-6 Sep 2016, 2.3L of pleural effusion (PE) was drained out but the X-ray showed that my lung could not re-expand to the original position. My Onc asked me to try practice breathing exercises at home but another X-ray today showed that this didn’t help. The empty space is now occupied by fluid. The problem with this PE is that it has caused me coughing for 3 months and my Onc told me to live with it for the rest of my life!! He said as far as he was aware, there is no treatment method to re-expand the lung.
Consulted a lung specilist in early Oct. He was of the opinión that the trapped lung was due to the tumors that had entangled the lung membrane. He asked me to be patient and wait until the effectiveness of Tagrisso to penétrate. By then, the lung will re-expand.
On 21-24 Oct 2016, 2.7L of pleural effusion (PE) was drained out. No sign of re-expansión was found. In fact, the situation has deteriorated. Now I need to use oxygen concentrator at home.
I am most grateful to have your advice how this problem is overcome. Many thanks in advance!
Reply # - October 26, 2016, 08:55 AM
Hi k1m1w1,
Hi k1m1w1,
Welcome to Grace. I'm so very sorry about your diagnosis. I just can't imagine the nerve I understand it takes at least sometimes to maintain a focused living. So thank you for your question and so glad you're here looking for a better life.
Pleural effusions are an unfortunate but common complication of lung cancer. There are several approaches that can be taken to lessen its complications. Below is a series of short videos that discuss ways to handle the problems. Sometimes it happens that reinflation just doesn't happen and continued biuld up continues. If that happens draining the fluid build up may become the best option. If draining on a regular basis is needed it's possible to have a perminant catheter placed and used at home so the need to go to clinic is deminished. Also there are different types of pemenant draining apperatus that you'd want to look into.
http://cancergrace.org/lung/2015/08/03/gcvl_lu-cc01_introduction_malign…
http://cancergrace.org/lung/2015/08/05/gcvl_lu-cc02_managing_pleural_ef…
http://cancergrace.org/lung/2015/08/07/gcvl_lu-cc03_tunneled_pleural_ca…
The below link is to a forum specific to pleural effusion. Looking through some of the threads may give you a better understanding of your situation and how better to handle the really difficult problem.
http://cancergrace.org/forum/lung-thoracic-cancer/lung-cancer-complicat…
Please don't hesitate to ask more questions we want you to find the best possible way to live your life.
Janine
Reply # - October 26, 2016, 10:25 AM
Hi k1m1w1,
Hi k1m1w1,
In addition to the good information on pleural effusions that Janine provided, there was a discussion about a possible surgical technique for this type of problem: http://cancergrace.org/topic/decortication-of-trapped-lung-corrected-ti… With that in mind, you might want to discuss your situation with a thoracic surgeon to see if this is a possibility.
JimC
Forum moderator
Reply # - October 26, 2016, 07:46 PM
Hi Janine,
Hi Janine,
Many thanks for the detailed information. I really appreciate it.
I did discuss about installing a permanent catheter with my thoracic surgeon but he was of the opinión that permanent catheters are normally used for patients with short life expectancy whose have no more suitable drugs to treat the tumors. But in my case, Tagrisso works for me and will be Chemo. His main concern of installing a permanent catheter is the risk of infection. If that happened, it would cause more complications and the chance that my lung could re-expand would be even more remote!
k1m1w1
Reply # - October 26, 2016, 08:08 PM
Hi JimC,
Hi JimC,
Thank you for your reply. I did discuss the possibility of applying decortication with my thoracic surgeon but he insisted that it wouldn't help much and asked me to forget about this. Complications caused by the operation is one of his concerns.
The outlook seems pretty grim unless my trapped lung is really caused by the tumors that have entangled the lung membrane and that Tagrisso really able to resolve that!
k1m1w1
Reply # - October 27, 2016, 08:38 AM
It's good to know you're
It's good to know you're looking into all the possibilities and getting feedback from a thoracic surgeon who knows your case. Your doctors seem to think you've got good reason to hope your lungs will improve. That's a good place to be, if you can look at it that way. ;)
Best of luck and high hopes,
Janine