Guest Karen L Posted February 22, 2003 Share Posted February 22, 2003 Hi all! Is there anyone out there with a malignant pleural effusion? My husband does not have a tumor, per say, but a sheet of adenocarcinoma in the pleura of his left lung. We have asked why they can't just cut it out and they say the risk outweighs the benefit. There doesn't appear to be any mets anywhere. We are with MD Anderson in Orlando and his case was presented to the Tumor Board but they were stumped. We are just now surviving DVT's, with extreme edema and starting a 2nd round of chemo. Quote Link to comment Share on other sites More sharing options...
Marlon Posted February 23, 2003 Share Posted February 23, 2003 Hi Karen, Maybe we can help each other. I know we've met already, but I wanted to tell you that your husband's diagnosis sounds exactly like my mom's back in July 2002. I think your "sheet" analogy sounds the most accurate so far. When my mom was diagnosed, they did every test imaginable (except a PET scan), and found no tumors, no mets anywhere, but the fluid tested positive for "cells consistent with metastatic adenocarcinoma". As far as we know, there have never been any tumors found. She was officially diagnosed as having "cancer of unknown primary", and her only symptoms were pain in the back and around the shoulder area. Somewhere along the line, the lung with the pleural effusion developed into a "trapped lung". That is when the lung becomes encased with a fibrous membrane or "rind", preventing it from re-expanding. This happened because prior to having the Pleurx kit installed, my mom would put off having to go to the hospital to have her fluid drained. One day they even drained over 4 Liters; the X-ray showed the whole right lung was opaque. This is not where you want to be, because then you have another thing to worry about. We would have been better off with a mesothelioma specialist. Luckily we found a thoracic surgeon who is familiar with a minimally invasive procedure to remove this rind. With this VATS surgery, the idea is to try and get my mom's lung to re-expand, in order to expedite the pleuradesis. It is called decortication, and may or may not involve removing the pleura itself. There is concern that the lung may not re-expand(at least not right away), because it has been collapsed for so long. It's just one thing after another! I have learned the hard way that in cases like my mom's and your husband's, it is better to see a thoracic surgeon FIRST. The reason is because malignant pleural effusion without presence of a tumor indicates you have very little cancer at all, and it makes the NSCLC Staging Guidelines completely inapplicable. Cancer cells just settled in the pleura. More experienced thoracic surgeons specialize in pleural metastases, and are the only people who have a direct method of treating MPE. The one we met with even questioned the installation of my mom's indwelling Pleurx drainage kit by a pulmonologist. Apparently, she isn't too keen on those drainage kits. She also mentioned that the top two cancers that cause MPE are lung and breast, that practically any cancer can spread to the pleura, and if there was a primary tumor, then the body probably got rid of it itself. Even though my mom's recent CT and PET scans came back clean, I am still very cautiously optimistic, because there were never any tumors to begin with! After a while, my mom's first oncologist actually said that there were some tumors, but after speaking with the two pulmonologists, I concluded he was just talking out his a$$ just to be able to give us an answer. It really ticked me off when they stopped trying to find the primary site. To hear that MD Anderson doesn't deal with many of these makes me even more worried. I'm just as stumped as you, so I don't have much to offer. But my mom has been doing 7 months of chemo, and the last two tests on her fluid came back NEGATIVE for cancer cells. We are relieved, but now have the trapped lung to worry about. She started on Carbo/Taxol, but that had no effect at all, and she is now on Gemzar/Navelbine. Did your husband have a PET scan? http://www.chestnet.org/education/onlin ... sson03.php http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract Please let me know if you have any thoughts or things you want to warn us about. Thanks. Sorry for rambling. Quote Link to comment Share on other sites More sharing options...
Guest Karen L Posted February 23, 2003 Share Posted February 23, 2003 Marlon I can just about ditto everything you have written. Jeff did have a PET scan in the beginning that lit up bone, adrenal and liver but biopsies were all negative and bone scan neg. That stumped everyone. The biopsy of the pleura showed the CA to be bronchogenic in origin. Up to that point it was unknown primary. (They were never able to find any other evidence and he had every test imaginable.) Sometimes they never find a primary. Our oncologist advised against the pleurex as it is another mode to transmit infection. Their stance is to drain it only if you're uncomfortable or can't breathe. If this occurs too frequently, then they consider the pleurex. I wish we would have known that as the 1st time it was drained he was left with a small pneumothorax, 2nd time his lung tore and he bled internally, 3rd time a wk later with the VATS procedure they found the tear and then he had another pneumo and went home with a chest tube draining into a glove. That really brought him down. It eventually fell out!! I freaked when that happened but I guess the hole closes off quick. He is not short of breath and doesn't need his oxygen. Saturations are good. He would be doing good had it not been for the blood clots but I think we are getting over that hump at last. His INR (clotting ratio) is staying theraputic on the coumadin. When they did the VATS procedure they were not able to re-expand his lung BECAUSE of the entrapped lung. I'm just not wondering if we should get another opinion. The Dr. we went to trained at Memorial Sloane Kettering but ya never know. Is your mom able to get around and do stuff? Jeff is just starting to get better other than the 3-4 days after chemo each week. He was walking with a walker and we did the whole 9 yds with the hospital bed and all because of the edema from the DVT's plus he was dehydrated, anemic and malnourished. So I'm really pushing this time around. We had to get his protein intake up as his albumin was low. But we went out for a haircut today and I think he is going to try venturing out with the guys to an air museum tomorrow. They have a separate driver incase he needs to come home. This is a BIG change and I'm so glad to see him enjoying himself. He was such an active guy who loved his work. Ramble all you like. I'm pretty good at it too. Karen Quote Link to comment Share on other sites More sharing options...
Marlon Posted February 24, 2003 Share Posted February 24, 2003 Yea my mom is able to get around well now because she is on supplements and a strict diet. She hasn't been wasting away since like October. She recovers from chemo after about 2 days, instead of 3-4 days like before. Maybe it is her young age, 50, but they never gave us take home oxygen. Our new clinic let us borrow an oximeter, and her oxygen levels are always above 95, even with basically one lung. I am kind of disappointed with the fact that the first hospital let it progress to this trapped lung BS, but then again, they aren't the nicest people to begin with. My mom is on coumadin too. My concern has always been: once we get rid of the cancer, what do we do about the trapped lung? The pulmonologists also told me that my mom was not a candidate for pleuradesis because of the trapped lung. However, that is only because theyr don't know about any other options. I've been reading that once trapped lung has developed, and the patient is a good surgical candidate, then decortication should be performed. The longer you wait, the less likely the lung will re-expand. I asked the pulmonologist about this decortication thing, and she said it was a major surgery that no one would put my mom thru. Then again, I can't have any peace of mind knowing that my mom constantly has this fluid around her lung. Good thing I didn't stop there, because this thoracic surgeon we found is one of the best in the area; She is a professor as well and I've even found research by her on PubMed. Her plan is to remove the fibrous peel around my mom's lung, and if it re-expands completely, then she can do the pleuradesis. She gives it about 30-40% chance of working, but a lot of the stories I've read say it usually will over time. Just the fact that she knows these other options is great to us. I even asked her why the pulmonogists told me it was a major surgery, even though my research indicated otherwise, and she said it was because they don't know a anything about the latest minimally invasive procedures. She said, "When are they ever in the operating room?". She said that they wouldnt even have to crack the ribs, and my mom could go home in 3-4 days. Quote Link to comment Share on other sites More sharing options...
Guest Karen L Posted February 25, 2003 Share Posted February 25, 2003 Do they remove the fibrous tissue from just around the trapped part and do the pleuradesis at the same time? My husband's trapped part is 4 cm because they were originally calling it a tumor, but it biopsied negative. VATS found it to be lung. I'm thinking maybe my husbands sheet tumor is too advanced so that wasn't an option. Is your mother's PE clear of malignant cells? Quote Link to comment Share on other sites More sharing options...
Marlon Posted February 25, 2003 Share Posted February 25, 2003 In my mom's case, the CT scan shows the entire lung seems to be entrapped. The best way I can describe it is it looks like a shriveled up version of a normal sized lung. No one knows for sure because the idiots at my mom's first hospital never bothered to actually look inside to identify what the pleural thickening was; they based all their assumptions on the scans. They could not tell me whether it was tumor or not. Since her recent CT and PET scans are clean, I have to assume it is not tumor tissue. I've read that trapped lung happens in about 10-30% of the time for MPE. The idea with the decortication is to remove this fibrous peel, and if the underlying lung parenchyma is relatively normal, and there are no tumors obstructing airways, then it should re-expand, making her a candidate for the pleuradesis. They do it at the same time, if and only if the lung can be successfully re-expanded. If not, then she will leave the drainage tube in there. The surgeon likens it to peeling a navel orange; in some cases it peels off without a problem, in other cases its harder. She doesn't think its too major procedure because she would not be removing any lung tissue, just this membrane that's not supposed to be there. It formed as a result of the pleural effusion midway between my mom's treatments. They say that decortication can be performed years after the formation of the peel. Yes, her fluid only recently tested negative for any cancer cells, twice, meaning it responded to the chemo. My mom's doctors said initially that any surgery was not an option because of the live malignant cells. Back then, if they were to remove the pleura, the chest wall would still be infected, so the idea is to treat the cancer systemically. The cytology report at the beginning reported "cells consistent with metastatic adenocarcinoma", which they say can start on the secretory glands of the lung, ie, the pleura. My thinking was that if there are no more cancer cells anywhere, then they should try and do something about the fluid buildup so we can have some peace of mind. See attached link. http://www.chestnet.org/education/onlin ... sson03.php Quote Link to comment Share on other sites More sharing options...
carlton Posted April 8, 2003 Share Posted April 8, 2003 Have just recently found this site wish i had a long time ago. I had a plural effusion last july that was positive for cancer cells. Also had a biopsy which confirmed cancer. Was shocked as i had some conjestion that over the counter meds did not help. Had a complete physical just six months prior and all was well. Docs said all that was available to me was a round of chemo taxol and cisplatin for six months. I Jan. bone scan neg. for spread chest scan shows no change as they said no worst no better the same brain scan and liver all okay. Still have problem with fluid buildup and breathing. Had not had pain until the last three weeks have pain in upper shoulder and back all around theleft rib side where tumor is. Docs never say much about tumor just that the cancer i have is bad and no cure so depressing. Gave me some pain medsthat made me sick and i felt like i could not breath kinda closed in my throat. Stopped taking them put have to do something tylenol not cutting it. Would like to hear from anyon on this matter . Thanks Carlton Quote Link to comment Share on other sites More sharing options...
Guest Tim'sKathy Posted April 8, 2003 Share Posted April 8, 2003 Carlton, My husband Tim was diagnosed 12/27/02 with a malignant pleural effusion...never been sick a day..and then, all of a sudden out of breath. They at first thought it was pneumonia, but no.... He had a VATS Pleurodecis done in January, which sealed the 2 linings (pleura) of the lung together, so there is no more fluid buildup. It was 90% successful with just a small leak...but now he does not get out of breath at all He has had 3 treatments of 6 with Carboplatin/Taxol (Once- 6hrs- every 3 weeks). after the 2nd treatment, he develped a cough during the period where his cell counts are low and they took an xray to make sure he didn't have pneumonia..he didn't and his onc told us that the remaining effusion has gone way down (which I am hoping means that the chemo is working). She has been very positive with us...told us that she will do radiation after chemo and as soon as the FDA approves Iressa she will put him on that. She has never said that there is only one treatment and then thats it.... He has no symptoms at this point other than the few days of nausea and then being fatigued from the chemo, but his breathing is fine...and his onc says his blood counts are bouncing back good, he is tolerating treatments real well ( I am the food police,,,he has gained 2 pounds) and she said his lung sounds good. He has no spread...the bone scans , Brain MRI and CT scans all came up clean. He has one tumor in the lung (Large cell I believe)..if we had just caught this earlier, they could have removed a part of his lung... But...we are staying positive...we believe in Miracles and have a lot of people praying for us. WE will overcome this..... So, hang in there...hope this has been helpful.... Kathy Quote Link to comment Share on other sites More sharing options...
carlton Posted April 9, 2003 Share Posted April 9, 2003 Thanks Kathy for the reply I live in ocala wonder if we have the same doctors. To be honest don'tlike the one i have was called in when i was in the hospital having my lung drained. You mentioned sealing the lung is that the talc like powder they put in to try to seal the lung. had that while in the hospital but fluid is back. Will continue to watch posts to learn all i can . Thanks again carlton Quote Link to comment Share on other sites More sharing options...
Guest AnneDan Posted April 15, 2003 Share Posted April 15, 2003 Carlton, Most of the pain meds made me nauseous (sp?) as well.... but here's what worked for me... darvocette - contains acetomenophine also the duragesic pain patch worked amazingly well and you just apply it every 72 hours... talk about freedom! Also, there is a trial being run at Jefferson Kimmel in Philadelphia for people with cancer in the pleural lining.... they have done 38 patients, with over half quadrupling their life expectancy times... I had my fluid removed and the fluid was cancerous and the biopsy they took from the lining was cancerous as well... no primary in my case either.... cancer both sucks and is a blessing all at the same time! Quote Link to comment Share on other sites More sharing options...
carlton Posted April 16, 2003 Share Posted April 16, 2003 Hi Anne Just read your post I have had a pres. for darvocette but it did not help. Gave me a pres. for dodeine with what tylenal has in it expensive but as i was taking it i was having more trouble breathing like my throat was closing in .Had a scan in jan to have another one in may (chest and abdomen) no change no better no worse the same but thepain is getting to me have pain upper back and all around rib cage on side of tumor . I still cough and have fluid can feel it and do get short of breath also have numb feeling around lowere rib .Do you have this numb feeling? I think pain meds slow down the breathing but what can we do if we are in pain? Well i will close keep posring it is good to learn from others. Thanks carlton Quote Link to comment Share on other sites More sharing options...
carlton Posted April 23, 2003 Share Posted April 23, 2003 Hi Anne Was reading your post again you mentioned about sime test being done at jefferson kimball in phil. When you have time could you post what you know about these test or where i could find out more info. Thanks Carlton Quote Link to comment Share on other sites More sharing options...
Guest AnneDan Posted May 12, 2003 Share Posted May 12, 2003 I have that EXACT numbness and pain inthe EXACT SAME AREAS of my chest.... AMAZING....... the numbness actually spread to my underarm and of late is trying to spread to my left elbow.... so i've been studiously massaging my arm and doing yoga poses to help out my spine.... scary stuff sometimes..... the dargesic patch has been wonderful for me... i was scared to go on it at first... but the freedom it gives you is incredible... only have to change it every 72 hours.... yippee!!! talk about quality of life.... k.... the jefferson kimmel thing,, let me find the paper.... hang on.... if you give me your email address... i can email you a bunch of info i researched on the web re photodynamic therapy.... i'll send you another reply with the website..... hang in there.... and that's so strange about the numbness.... i was not a candidate for radio frequency ablation and that bummed me out for a while , but i'm over it now.... moving on to find out about this surgery thing... take care Quote Link to comment Share on other sites More sharing options...
Guest AnneDan Posted May 12, 2003 Share Posted May 12, 2003 http://www.kcc.tju.edu/Clinical/CancerC ... er=02.9061 Quote Link to comment Share on other sites More sharing options...
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