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Introducing Myself - Finally


TAnn

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Hello...

I have been viewing this website since being diagnosed in April '03 and finally decided to participate. I guess I am finally comfortable with my disease and hope I can be of comfort to someone out there as you all have been to me over the past months..

I am a 41 y/o never smoker dx'd April '03 with NSCLC Adenocarcinoma of the upper right lung with a malignant pleural effusion, Stage IIIB/IV.

I live in Houston, TX and have the blessing of having one of the best cancer facilities in the nation...MD Anderson. I know some of you have visited and did not have good experiences, but I cannot say enough good things about it. I have been through 5 out of 6 treatments (my blood counts wouldn't come back up for the 6th) of Carbo/Taxol and am now participating in a clinical trial of ZD-6474 with Taxotere. I have completed 4 of 6 treatments and hope to find out if I've been getting the drug at the end of the trial. (It's a double blind trial, which bites!)

I have not seen many posts from people with malignant pleural effusions and was wondering if anyone has any personal information on the subject. It is not a good complication to have (duh!) and I'd like to know what to expect.

Thanks for this website and I look forward to getting to know you all.

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Welcome to the silent minority of the silent disease, TAnn. Then again, I'm not real silent when I feel my toes have been stepped on even here with some people assuming all lung cancer is caused by smoking....that's me, champion of the underdog...

No experience with malignant plueral effusion, can't help with the "what to expects" of that...

MD Anderson - my oncologist thinks highly of MDA and sent me there for my second opinion. Guess I just wasn't sick enough for them as I went down less than a month after surgery to remove the little gremlin (and believe me, I hope to stay "not sick enough" to be of interest to Houston!). Can't say the trip was all bad, got to spend time with a work contact from Freeport - she came up to Houston with her husband and the four of us (my hubby, too) spent the afternoon around the town and out to dinner at Dave & Buster's...she's a lil' Texas spitfire, that girl!

ANYHOW, welcome to the family. Step up, speak up and feel the let up of some of the stress... Strength in numbers...

Take care,

Becky

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Info from http://www.smokinglungs.com/pluefcha.htm

Malignant Pleural Effusion

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Pleural effusion is a common and devastating complication in patients with malignant neoplasms. It is usually caused by disturbance of the normal Starling forces regulating reabsorption of fluid in the pleural space, via obstruction of mediastinal lymphatics draining the parietal pleura. Tumors that metastasize frequently to these nodes, i.e. lung cancer, breast cancer, and lymphoma, cause most malignant effusions. Pleural effusion restricts ventilation and causes progressive shortness of breath. Pleural deposits of tumor cause pleuritic pain. Lymphangitic pulmonary metastases further worsen pulmonary function. Management is usually complicated by the presence of disseminated tumor, with bone, brain and other organ metastases. In addition, the patient is often malnourished and debilitated. Untreated, death usually ensues within a few months due to the primary disease or to complications related to the effusion.

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Diagnosis

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The new onset of a pleural effusion may herald the presentation of a previously undiagnosed malignancy, or more typically, complicate the course of a known tumor. The first step in management in almost all cases is thoracentesis. An adequate specimen should be obtained and sent for cell count, glucose, protein, LDH, pH, appropriate cultures and cytology. A negative cytology result is not uncommon, and does not rule out a malignant etiology. If no specific diagnosis is obtained after thoracentesis, and malignant disease is still suspected , pleural biopsy was previously the typical next step in the workup, with minimal diagnostic yield. Currently, thoracoscopic examination is emerging as a more reliable technique. It has a low complication rate and allows a comprehensive visualization of one pleural cavity with the ability to biopsy areas of disease. It also offers the opportunity for simultaneous treatment by pleurodesis or pleurectomy. This will provide definitive diagnosis and allow the pathologist to suggest possible sites of primary disease based on the histo-pathologic appearance of the tumor. This technique will also allow diagnosis and staging of malignant mesothelioma if this disease is the cause of the effusion.

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Treatment

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Malignant pleural effusion should be treated aggressively as soon as it is diagnosed. In most cases, pleural effusion will rapidly reform after treatment by thoracentesis or tube thoracostomy alone. If it is decided to treat the underlying primary malignancy with chemotherapy, in tumors such as breast cancer, lymphoma and small cell lung cancer, it is important to carefully follow the patient and treat immediately upon recurrence of effusion. If a malignant pleural effusion is left untreated, the underlying lung will become encased by tumor and fibrous tissue. Once encasement atelectasis has occurred, the underlying lung is "trapped" and will no longer re-expand after thoracentesis or tube thoracostomy. Characteristically the chest roentgenogram will show resolution of the pleural effusion after thoracentesis, but the underlying lung will remain partially collapsed. This is often misinterpreted by the inexperienced clinician as evidence of a pneumothorax, and a chest tube is placed. The air space persists and the lung remains unexpanded even with high suction and pulmonary physiotherapy. Allowing the chest tube to remain in place can worsen the situation by causing bronchopleural fistulization and empyema.

To avoid this disastrous complication, the pleural effusion should be treated definitively at the time of the initial diagnosis. Multiple physical techniques of producing adhesions between the parietal and visceral pleura, obliterating the space and preventing recurrence have been used, including open or thoracoscopic pleurectomy, gauze abrasion or laser pleurodesis. Surgical methods have not been demonstrated to have any advantage over simpler chemical pleurodesis techniques in the treatment of malignant effusions

Multiple chemical agents have been used. The largest experience in the U.S. has been with tetracycline. Tetracycline pleurodesis results in a lower incidence of recurrence , when compared with tube thoracostomy alone, but often causes severe pain and is no longer manufactured in the United States. Doxycycline has been recently advocated for the same indications and a single are retrospective study indicates that doxycycline is roughly equal to tetracycline in effectiveness. Intrapleural bleomycin in a dose of 60 units has been shown to be more effective than tetracycline, is not painful to the patient, but has a high cost. Absorption of the drug can result in systemic toxicity. Talc pleurodesis was first introduced by Bethune in the 1930s, but has not been widely used in the U.S. until the past decade. Numerous studies indicate that it is an effective method, preventing recurrent effusion in 80-90% of cases. It is less painful than tetracycline. Cost is minimal, but special sterilization techniques must be mastered by the hospital pharmacy. Talc can be insufflated in a dry state at the time of thoracoscopy or instilled as a slurry through a chest tube. The dose should be restricted to no more than 5 grams.

With any form of pleurodesis, a 24-32F tube should be inserted through a lower intercostal space and placed on underwater seal suction drainage until the pleural drainage is minimal. Because severe lung damage can be produced by improper chest tube placement, it is imperative to prove the presence of free fluid by preliminary needle tap and enter the pleural space gently with a blunt clamp technique, rather than by a blind trochar insertion. In the case of large effusions, especially those that have been present for some time, the fluid should be drained slowly, to avoid reexpansion pulmonary edema. If doxycycline or talc is to be used, the patient should be pre-medicated with narcotics. Intrapleural instillation of 20cc of 1% lidocaine before the chemical agent may help reduce pain. Following instillation of the chemical agent, the chest tube should remain clamped for at least two hours. During this time, the patient should be encouraged to role into prone, supine and both lateral decubitus positions in order to bring the drug into contact with the entire pleural surface. If high volume drainage persists, the treatment can be repeated. The chest tube can be removed after two or three days, if drainage is less than 300 ml/day. Follow up films at monthly intervals are important to assess the adequacy of treatment and to allow early retreatment in case of recurrence.

If encasement atelectasis is found at thoracentesis or thoracoscopy, then tube thoracostomy and pleurodesis are futile and contraindicated. Surgical decortication has been advocated for this problem. This is a potentially dangerous procedure that may result in severe complications such as bronchopleural fistula and empyema. Placement of a pleuro-peritoneal shunt may be helpful in some cases, but obstruction of the system by fibrinous debris is a potential problem. Intermittent thoracentesis, as needed to relieve symptoms, is probably the best option in patients with a limited survival. A pleural "spigot" has been created by inserting a peritoneal dialysis catheter and connecting it to a closed system drainage bag. The patient then merely unclamps the catheter and drains the fluid in response to dyspnea due to reaccumulation of fluid. Experience with this technique is limited. Fourteen published cases experienced good palliation. with no major complications reported. Sterile technique is important, as infection of the pleural space would worsen an already bad situation.

Radiation therapy may be indicated in some patients with lymphoma but has limited effectiveness in other types of tumors. It is problematic because of the potential for lung damage in a patient who is usually already dyspneic. Chemotherapy options will depend on the cell type of the tumor and the general condition of the patient.

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Thank you Snowflake for your welcome.

Houston's not a bad town at all, and Dave & Busters is a fun place. My husband & I used to take my son there all the time. (He is now 18 and doesn't go out w/mom & dad too much!) Anyway, about the never smoker comment... I get very annoyed when I tell someone about my disease and the FIRST question they ask is "do you smoke?" No one deserves this horrible disease.

I'm reading more statistics that non-smokers make up a growing (if not greater) percentage of lung cancer patients. It IS NOT a smokers disease.

Take care and God Bless.

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TAnn,

My oncologist listed the risk groups in lung cancer - highest risk is current smokers (both sexes), next highest risk group is former smokers (both sexes), third highest risk group is never smoked young women (like you, me, Hebbie, Beckyg,...)

SO, my guess is that tobacco contains ESTROGEN and lung cancer is linked to ESTROGEN and is yet ANOTHER "boys rule" thing where they get all the GOOD side of the coin toss - standing up to pee without getting their socks wet, having children with two minutes of effort, no PMS....

(Okay, I was kidding, but maybe I'm on to something....ya think?)

Becky

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Welcome TAnn!

You sound as if you have a great attitude and have already "girded up" to fight this awful disease.

My husband had plural effusion. His lung was found to be completely filled at the time of diagnosis. The lung was drained at that time and after having 6 sessions of chemo he has only a very little fluid left on the lung. He says he is feeling quite comfortable, long may it last!

I see Rich has provided you with lots of information, so I will say only that I wish you well and will add you to my long prayer list.

Love

Paddy

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Hi y'all,

One of the first things that hit me right smack in the face when I signed up on this board was the number of non-smokers here and the way that they seem to show even more courage than some of us smokers.I was a life-long heavy smoker and still crave nictotine.I never had any idea that non-smokers were so tied up in this terrible disease.My stupidity for never even reading about it.I knew smoking caused it.I smoked.I am suffering because of that.I was one of those,"well,if you get your regular chest xrays and somehow fate picks you out",you will have time to deal with it.I gambled and lost.I have not given up and intend to fight to the end but I do feel an extra load of sympathy to those of you that never smoked.I admire your courage and I can only imagine your frustration.I never had any smoking related symptoms.By the time I knew I had it in my lungs I was having headaches and hearing noises and loosing movement in my right hand.Brain mets.So much for xrays.I didn't realize how useless they are at times either.I had one diagnosed as bronchitis on 12/8/03.12/24/03 I was in the emergency room basically unable to function with headache and hearing loud noises.We are all here now and in a fight.I just wanted to say that I think that the non smokers out there have even more to deal with when it comes to emotions in this fight.We must stay positive at all times.Can't get into that "why me?" thing that I find myself slipping into at times.I pray for us all and I hope I didn't step on any toes.I feel much better by writing this now.Woke up kinda blue this morning.You all have a wonderful day.And smile when you get a chance.I am headed out to my 13th of 15 radiation treatments this morning.Got to remember to keep this bald head covered.Love to you all.TBone

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If there is one statistic I would like to get out to "the rest of the world" it is this: While the rate of lung cancer among smokers has remained fairly steady (15 to 20 percent), the rate of lung cancer among NON-smokers has risen DRAMATICALY (from virtually zero to over ten percent).

Dean

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Thanks to all for the warm welcome.

T-Bone,

I try not to think about how I got this horrible disease, I've got it and I have to fight it with all I can. It was hard at first, but when I knew that I would never have the answer to that question, I knew I had to move on.

I too had a rough day today. It's raining and dreary in Houston, so maybe it's just the weather. We have to let ourselves feel, get it out of our systems and then we can pick ourselves up and get the fight back in us!

I really appreciate your kind welcome and will keep you and the others in my prayers.

Hope you have a better tomorrow!

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