Malignant pleural effusion?

[Minh]

Thank you Lou,

Just came out from pulmonologist office. He said I might have trapped lung complication because of recent lobectomy which required surgery to repair. And the X-ray I just had confirmed the trapped lung diagnosis. I don’t like it. I just had lobectomy. I don’t want another lung surgery to repair lobectomy complication. When will it end? Surgery to repair another surgery’s complication. I am not sure if I can survive this many surgeries in a few months.

[LouT]

Minh,

Oh wow...another complication.  Okay, it appears that "trapped lung" is the inability of the lung to expand properly against the chest wall.  I'm assuming that whatever they do will be with the purpose of releasing tissue so it can expand properly as it should.  I'm so sorry you have to go through this.  Know that we are pulling for you.

Lou

[Carla G]

Hello Minh, 

I just read your story. The header caught my attention since I was diagnosed with malignant pleural effusion in April 2021.  First, I'm sorry to hear about all of your complications.  I had 2 thoracentesis procedures to drain the fluid.  The first one was the day after diagnosis and the 2nd one eight days later.  I felt immediate relief once it was drained.  It was initially 75% full.  Doc told me 50% of time the fluid will come back and it did.  In June, I had a pleural catheter inserted since my fluid also became loculated.   I was afraid to have it inserted but it was so much easier than going to the hospital for the thoracentesis procedure. Best news is that my fluid has been gone since July.

I believe the combo of chemo and draining it through the catheter (which involved training my husband to do every other day) eliminated the fluid.   The biggest downside was getting comfortable while sleeping. I couldn't lay on my right side for 2 months.  I hope by the time you read this you have found some resolution.  

I also had random fevers and they disappeared after the fluid was gone.  I still have a big tumor in my lung but my breathing is very good at this time. 

Carla

[Minh]

Hi Carla,

I am glad you are doing well and thank you for sharing your experience.

Here is a quick summary of my situation. Initially I had 3 Thoracentesis for my left lung prior to my lower right lobe lobectomy in November 17, 2012. I was doing well during the lobectomy recovery until after Christmas when I felt shortness of breath and had 7 days of fevers. I then checked myself into ER where they found out I had pleural effusion and Covid 19 infection. They had to use pta/dnase to break up the loculated liquid and then drained it (1.2 liter). They did not give me and treatment for Covid 19 since I was vaccinated with booster. So the fluid was drained and they sent me home 7 days later on Jan,13,2022 (about 2 weeks ago). I came home and followed up with my pulmonologist two days ago (Jan,27,2022). He had me took a X-ray which showed liquid had reaccumulated again in my right lung. His diagnosis is I had a trapped lung (right lung that had surgery) which most likely requires full open chest surgery again. Even with the surgery, it may not fix the problem and the risk of major complications is very high. I am not sure if I can survive another surgery so soon after the recent lobectomy. My prognosis doesn’t look good. At this time I have very bad shortness of breath. I can’t walk 50 feet without taking 10 minutes break by laying down. I am waiting to hear back from my pulmonologist as to what other treatment options available beside surgery. I try to avoid surgery if possible. But I may not have other choices.

[Minh]

I am still in process of diagnosing trapped lung. It will take another couple weeks for pulmonologist to get all the tests done. At this time since my mutation is egfr deletion 19, my oncologist offered me Targrisso even though I am stage 1a? Not sure whether I should take it because typically  adjuvant therapy is only offered to stage 1b-2.

What a dilemma! If I don’t take it I might regret it later when it comes back. And if I take it, cancer will mutate and become resistant to Targrisso which take away my best available drug for egfr deletion 19.

[Minh]

After three months of RLL lobectomy, now I am diagnosed with trapped lung and required another lung surgery to hopefully fix it. Surgeon said successful rate is 50/50. Surgery is scheduled for next week 02-Mar-2022. I have had 3 major chest surgeries in the last 10 months. As of now I am more likely to die of cancer treatments than cancer itself. I have gotten on this treatment treadmill and may never get off from it!

[Tom Galli]

Minh,

I we’ll know the back-to-back-to-back thoracic surgery shuffle. I had 3 open thoracotomies in the span of 6 months. Then three rigid bronchoscopy stent insertions (all failed). So I know what you are going through.

But consider that was 18 years ago in the “dark” ages of thoracic surgery, well before VATS and other less invasive procedures were developed. 

I’m still here and if I can live, so can you!

Stay the course. 

Tom

[BridgetO]

Wow, Minh! It's just one thing after another for you. Hang in there and think of Tom, still with us. I'll be thinking of you next week. Let us know how the surgery goes as soon as you are able.

[Minh]

Thank you Bridget and Tom for your support and encouragement.

Decortication is the procedure I will get tomorrow. Surgeon said 50/50 chance it will fix my trapped lung and hydropneumothorax problems. If this doesn’t fix it, then surgeon recommends another surgery called Clagett thoracotomy which requires to remove ribs. I am just totally freaked out thinking about this.  I hope the decortication fixes the problems. As of now, sob is really causing me a lot of distress. Even taking a shower is very tired. I have to get shower done in 10 minutes or I would be exhausted. Same thing with eating, I can not finish a meal in one sitting without being exhausted. I have to lay down and take a break every couple of bites. Quality of life has gone to near zero in 7 weeks since beginning of the year.

 

[LouT]

Minh,

You're in my prayers and thoughts.  You surely deserve relief and healing.

Lou

[Minh]

Not sure when they will discharge me but I am still in recovery room in hospital for my lung surgery for trapped lung 5 days ago on Mar-02-2022. They found bacteria infection in my right lung that was selected for lobectomy back in Nov-17-2021. They put me on antibiotics for 8-12 weeks and hope that will fix it. I will go home with all kind of tubings in my chest and arm. As of now I still have same symptoms of shortness of breath. But they told me I will get better if the bacteria is eradicated in 2-3 months. They don’t even want to discuss about what if the bacteria still there.

[Tom Galli]

Great news Minh.

Stay the course.

Tom

[LouT]

Minh,

All my digits are crossed that the surgery and antibiotics will take care of the SOB for you and restore you so you can take it easier than the recent past has been.

Lou

[Minh]

So I was discharged from hospital last week with chest tube and picc line in arm. Chest tube was removed after i came home for about a week. I still have shortness of breath, but they said it should get better in about 6-10 weeks. I am cautiously hopeful. The picc line in my arm will not be removed for 4-8 weeks depends on how well I recover from the bacteria infection. If not, another extensive lung surgery is required to clean out the infection again. My final diagnosis is empyema without fisstula. Infection bacteria is cutibacteria infected lung. Treatment is a regime of Unasyn antibiotic injects directly into blood stream for 6-10 weeks. 

[Minh]

Today is my last day on antibiotics. I have been on it for 6 weeks since surgery. I still have shortness of breath. Can’t walk for 5 minutes without running of breath. Even sitting up is tired. Appetite is terrible, but hoping it will be better after antibiotics treatment. I will have a followup with dr. in 10 days. Hopefully no more surgery is required. Best of luck to all. Stay healthy!!!

[LouT]

Minh,

It's good to hear from you again.  Sorry that the SOB is still there, but hopefully the antibiotics will have some positive effect.  I'm not sure if you have a spirometer, but if you do using that may help keep your lungs clearer and also give them a mild workout.  Please continue to keep us updated.

Lou

[Minh]

After 10 weeks of second lung surgery, my shortness of breath and chest pain continue. Infectious disease doctor said I had empyema because of bacteria infection of the lung. After 6 weeks of IV antibiotic treatment, they are still not sure if the bacteria is completely dead. But they hope the bacteria has not infected my blood because it could cause serious heart damage to my mechanical aortic heart valve that was replaced last year. The bacteria is known to be indolent meaning it is very slow growth.  So blood testing may not detect it immediately. It may take between 6 months to 12 months for it to show up in the blood test if the infection still there. If it has infected my blood, I will need to have another aortic valve replacement surgery which surgeon does not liken. I still have a lot of trouble breathing and chest pain. I mostly bedridden because when I sit up I can not get full breath. Only laying down will give me some relief. Surgeon said my condition may become permanent. But have to wait 6 to 8 months to find out.

Meanwhile, they kicked me off disability insurance. Trying to figure out how to support my family with two teenagers with no incomes. Savings have been drastically drained since diagnosed last year.

 

[Minh]

I just had my first 6-month scan after lobectomy for a right lung tumor. There appeared to be a 2.3cm tumor on the left lung. But it does not appear to be active. So I guess that is good news. I still have difficulty breathing, shortness of breath, chest pains, and very fatigue and depression.  It’s been 6 months for lobectomy and 3 months for lung trapped surgery. I am not sure when I will return to functional. I can’t do much without running out of breath quickly. Surgeon told me my condition could become permanent, and have to wait and see. Wish everyone stays well!

[LouT]

Minh,

Are you also seeing a pulmonologist?  If not, please do.  I'm hoping that you can get some relief from the S.O.B. so you can be more comfortable and active.  You've had quite a ride with your recovery and I do hope that it improves for you.

Lou

[Karen_L]

Surgeons sometimes think they have "cured" a patient and so make no further referrals. I strongly second Lou's suggestion about a pulmonologist. 

Hang in there, even though it is very hard.

You have been through so much-- have you thought about a counselor who could offer you support? 

Karen

[BridgetO]

I agree with Lou and Karen that a pulmonologist (or two) would be a good idea. You might also consider consulting withta palliative care doctor since you have had such a an array of diagnoses and procedures, and now so many lingering effects. They might help you and  the other medical professionals sort this out and improve your quality of life.

[Minh]

I just came back from cardiologist appointment. I had an echocardiogram done. The result is my mechanical heart valve is still functioning properly. There no vegetation found on valve surface. He suggested that all my symptoms are results of lung surgery complications. I will see pulmonologist soon to diagnose my symptoms. Ideally I should see my surgeon that operated on me, but he has transferred out to different hospital and no longer able to see patients. 

[Minh]

Here is my latest status after 6 months since my last lung surgery, my total lung capacity (TLC) has returned to 63% which still considered as lung severe restriction. It needs to return above 70% to be considered as normal. I still have shortness of breath when walking less than 500 feet or 5 minutes or less. The chest pain is still there even I am taking pain medications. Now I have back pain at night that keeps me from getting a good sleep. It usually peaks between 4:00am and 5:00am and wakes me up. 

[LouT]

Minh,

Some recoveries are more difficult than others.  Lung capacity is always an important part of your LC recovery and when it doesn't go well it can be problematic.  Have you or your medical team considered "pulmonary therapy" to help you to regain more of your capacity?  While I haven't had it others here have found it helpful in recovery.  

Sorry to hear about the pain.  Have the doctors determined the source/cause for it?  My thoracic surgery (lobectomy) left me with numbness and pain on my right side that has only reduced over the last number of months (I had my surgery more than 3 years ago).  For my part I had to take a combination of Advil and Tylenol along with Gabapentin and even then it took a long time for it to fade.  I hope you and your team can find a way to reduce the pain for you.

Lou

[Tom Galli]

Minh,

My TLC is about 40% on a good day and even then I need to stay indoors during bad air pollution and high pollen count days. I also have severe shortness of breath when walking fast, bending over, squatting or walking up hill. I also have chronic pain in the area of my tracheotomy scars and where they removed ribs. This pain is normally about 4.5 on a scale of 10 but can get worse if I sneeze, or experience muscle cramps. My strategy is to avoid taking pain medication. I do take a single 0.5 mg does of Xanax every night to make me drossy and induce sleep. If sleep is difficult, my doctor allows me to take a total of three 0.5 mg of Xanax. I've been on the Xanax therapy for years now and am likely "addicted" to this medication, but my GP understands and supports this use. He prefers Xanax to narcotic medication. He explained I needed to carve out a life strategy to learn to live with pain because nothing will reduce the symptoms.  Indeed, sleep is my most challenging life condition. I've lived with these challenges almost 19 years.

I switched to an electric adjustable bed and high quality high density foam mattress. Elevating the head-end of my bed transfers some of my upper body weight to my hips and reduces somewhat the discomfort around my incision scars. I also spend time standing in the pool such that my incision scars are below the water level. This buoyancy effect offsets the gravity pull on my scars and does provide some relief but only while I'm in the pool. But, this 2 to 3 hours of emersion therapy is a godsend!

I do hope you can find a way to live with your pain. It is challenging, I know, but it may now be a chronic symptom. 

Stay the course.

Tom