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Cathy B
07-09-2004, 07:23 AM
Has anybody out there ever had a drain put in to help in getting rid of pleural effusions? I am on Gemzar and herceptin but, while the combo is working to reduce size of mets in lungs, it is not working fast enough to get rid of the fluid so my onc is suggesting a drain that I will empty myself when needed. I asked him how many months this would go on and he told me it would probably be a matter of days or weeks. I would appreciate ANY info anyone out there has regarding this subject. Thanks in advance!!!

Christine
07-09-2004, 02:27 PM
Cathy
I had pleural effusion in my left lung from enlarged nodes under my chest wall that was pressing on the cadio-pulmonsry arteries. When taking A/C chemo for 3 cycles the effusion increased. I complained about this progession and pushed for the next line of therapy, Herceptin/taxol combo. After 3-4 days the litr. of fluid evaporated and fizzed away and never came back. I can't say the same can happen for you, but I thoght I should tell tou about how my effusion was was resolved. If I was extemely uncomfortable and breathless, I guess I would have been forced to have a drain put in. I remember as I progressed I couldn't sleep laying down flat and kept myself upright. OBVIOUSLY A/C PROVED TO BE INSENSITIVE TO MY HER2 CANCER.
LATER FOUND OUT THAT Her2 cancer can be ineffective with some of us.

Anonymous
07-10-2004, 01:05 AM
Christine - thanks for your reply. I know exactly what you mean when you say you couldn't lay flat on your back. I am only comfortable on one side or the other right now.
I had a thorocentisis a few months back but the fluid came right back in a matter of days. I had A/C my first go round with BC back in the fall of 2001. Had a recurrence in Oct 03 and was on herceptin/taxotere when the fluid started accumulating this spring so that combo did nothing. The Gemzar actually did give me some relief for awhile and my onc thinks that it will continue to be of help if I can just get rid of the fluid faster. Who knows. Anyway, I appreciate your response and you are right - this her/2 is a tricky thing to deal with, as we all know only too well.

susanne
07-10-2004, 08:34 AM
You might ask a doctor about pleurodesis. It takes care of the fluid problem.

Maggie in Maryland
07-10-2004, 10:11 AM
Dear Cathy,

Your post reminded me of my situation from October 2002 until March 2003. The fluid kept accumulating on my left side and I was quite short of breath. The young pulmonary physician spoke to me about the talc process and/or installing a drain. I went to an Onc at Johns Hopkins for a second opinion and she told me my object should be to stop the disease because this type of surgery is not pleasant.

After lots of serious infections and frequent hospiltalizations, my guardian angel (an old and wise pulmonary professor) entered my hospital room when all the drs. were giving up on me and concluded I was suffering from "Radiation Pneumonitis" or some call it Radiation Recall. He immediately ordered large doses of steroids through the IV. I was able to leave the hospital five days later without oxygen.

It is now 16 months later and I am happy to report the fluid in my left lung is not a problem. Yes, the malignant pleural effusion is there (because there is no Cure for this disease) but it is minimal. I do know that Gemzar can excerbate the fluid. I am currently on Herceptin weekly, Navelbine (2 weeks on and one week off); Prednisone 10 mg one day and 5 mg the next. and Femara. The combination of drugs are keeping me alive and well. This week I saw both the Onc. and the Pulmonary phys. and both said they would not change anything because they do not want to rock the boat!

I find the fluid business to be very scary so I really relate to your problem. I do not know if my experience will help but steroids have contributed to my functioning on a normal basis.

Hugs,
Maggie

cathyB
07-10-2004, 11:44 AM
Maggie - thanks for getting back to me. I, too, have heard that the talc procedure is not pleasant but have also heard that the drain is not supposed to be too bad. Will be meeting with a pulmonary doc early next week and will get his thoughts. I know that my fluid is not malignant as they ran a test on it when I had a thorocentesis a couple of months back. Of course, as we know, everything with this disease is subject to change.

I am very intrigued with the Radiation Recall business and will certainly quiz my onc and the pulmonologist about that as well as the fact that Gemzar can exacerbate the fluid situation. I really appreciate hearing from you and will have much to discuss with my docs. Glad to hear you are feeling better. This SOB really cuts down on your quality of life!!!

PS - I am in Gaithersburg, where are you?

cathyB
07-10-2004, 11:47 AM
Suzanne - sorry to be so unknowledgeable but what is pleuralodesis??

cathyB
07-10-2004, 11:48 AM
sorry - pleurodesis

susanne
07-11-2004, 03:06 AM
Pleurodesis might really help you. It is the fusing of the pleura (the lung lining) to the chest wall. This is done with talc, bleomycin or some other sclerosing agent (scarring).First, tubes are put in the chest to drain the lungs as completely as possible. After a few days, the talc is put through the tube and the pluera scars down against the chest wall. I was really adverse to do this, and it was NEVER talked about by the oncologist and pulmonologist. I guess they wanted to drain until my demise. All told, I got about 20 thorocentesis'. Eventually I had a "trapped lung". By the grace of God I found a pulmonary surgeon in another town who knew alot about this and I had surgery 4 days later. Sometimes he fixes it surgically like he did me, as I now had a collapsed lung and trapped fluid. He is the best. He will not just "blow in" talc in the lung as many pulm onary doctors do. He believes that that is archaic and ineffective. Where do you live?

susanne
07-11-2004, 03:12 AM
ps. Don't let thorocentesis be the primary way that you treat this. My pulmonary surgeon told me that I had about 19 thorocentesis' too many. It is very tiring, weakening, and takes protein out of your body. It realy woke me up to the realization that you are viewed as "on your way out", and the thorocentisis is thought of as a palliative or symptomatic treatment, and it is--but it doesn't last long at all and there are terrible side effects. Pleurodesis is so much of a higher quality treatment!

cathyB
07-11-2004, 03:25 AM
Suzanne - FYI, I live in the Maryland suburbs of Washington, DC.

CathyB
07-11-2004, 03:26 AM
Suzanne - I have heard that the "talc" procedure is very painful. What was your experience?

susanne
07-11-2004, 06:54 AM
It doesn't have to be painful---if you are medicated before the proceedure and afterward/
But pleurodesis is not painless--but it is far preferrable to fluid on the lung and not being able to breathe.
There are better methods than the old "blow the talc in through the chest tube" method. My doctor says that it went out with the dinosaur, and there is a more precise and accurate way to scar the lining. You need to see what you are doing.
Don't wait till your lung is so damaged that surgery is nessessary! Itis worth your time and money to find a pulmonary surgeon , one which (if you can) specializes in pulmonary surgery and ideally (like my doctor in San Jose) specializes in pulmonary oncology---not a common thing.
Write me, I'll try to help you!

eleanor
07-12-2004, 01:50 AM
Hi,
the pulmonary surgeon is called a thoracic surgeon and he would be your best bet for a consult.
i had the pleuradesis done on both lungs last year, yes it is effective, but there are drawbacks which were not mentioned. possible lasting side effects could be a lung that doesn't fully inflate and you could end up with trapped fluid that cannot be removed.
the surgeon is going to be your best advisor and will be able to explain the pros and cons (you actually have a few options) and be able to answer your questions.
i personally chose not to go the drainage tube route. I have four children and felt that was not an option for me. I was on the tax/carb/herceptin combo at the time.
el