STAGE IV, PLEURAL EFFUSION AND DOCS - Cancer: Lung Message Board

SEOULWOMAN · 10-02-2002, 12:22 AM

My father was diagnosed in March of this year with stage IV lung cancer, pancoast tumor, mets to the spine, rib and hip. Recently he was admitted to the hospital with pleural effusion. It was in loculations. He had completed radiation 6 weeks prior. The doctors said there was nothing they could do. And said he had a couple weeks left I did alot of research and found an effective treatment, that the pulmonologist did. Last week they got 2 liters of fluid off, and did a pleurodesis. I have since found some new alternatives to chemotherapy. However, the palliative care doctor won't even entertain any ideas, just keeps saying we "HAVE to prepare". I think the most life threatening part of his hospitalization was the pleural effusion. However, the doctors won't even talk about further treatments. I don't totally believe them, I mean two weeks ago they were going to let him drown in the hospital-even though they are a palliative care unit.

I don't live near my father. I spend hours on teh internet everyday doing research for my mom. I need some encouragement.

They say the cancer has spread further in that lung. But they didn't do a biopsy. Just some scans. His mets are the same as they were when he was diagnosed, not really any further mets, except for the pleural effusion.

HOw can the doctors be so shallow. And bull-headed.

We live in Calgary, Canada, and if anyone knows of any good oncologists here, would really appreciate the information.

As well, stories of hope are always welcome.

Thank-you,

Seoulwoman

LeisaH · 10-02-2002, 10:07 AM

Seoulwoman
Hi! I also too live in Calgary. I would check what kinda DNR orders he has. Mom wanted nothing done, so nothing was done. Even when she did get a pleural effusion. And we did try other more natural methods and other alternatives and they did let us try them as they said that they would do no harm but then we really did not give them a choice..... Mom was in Regina and I spent many hours scoping the internet to find cures also.
[This message has been edited by LeisaH (edited 10-02-2002).]

[This message has been edited by LeisaH (edited 10-02-2002).]

LeisaH · 10-03-2002, 01:14 PM

Bill, actually within Canada, they do encourage that you tell your regular doctor everything that you are taking. In other cases if you are in an expermental case study, the doctor does have the right to say to you.... no do not use anything but what we are giving you. Mom was taking iressa and they have very rigid guidelines to what is allowed and what is not allowed. And yes there are always miracles that happen and I personal can vouch for a couple..... but they do not always happen.

NinjaJubei · 10-03-2002, 08:12 PM

Hi,

My mother also has a collapsed lung due to a pleural effusion she had drained a few weeks back. They drained over 4 L of fluid. Now, the fluid isn't coming back as fast, and her pulmonologist is amazed. Today we went to another hospital for a second opinion. This new place knew about the other treatments for pleural effusion(urokinase, streptokinase, etc.), but they are hesitant to use them because, according to them, it would cause too much damage to healthy tissue. These agents are supposed to dissolve the fibrous tissue around the lung so that it can re-expand. I also asked about surgery to remove the fibrous peeling. But they said that this particular procedure carries an 8-10% mortality rate.

Your story sounds a lot like mine. The reason why I took my mom to this other hospital was because her current hospital seems unjustifiably pessimistic in any further treatments, when all the research I've been doing says there are still options left. Like with the urokinase/streptokinase. They didn't know anything about its effectiveness in resolving loculated pleural effusions. I feel like there must be some kind of cost-benefit thing involved.

SEOULWOMAN · 10-05-2002, 04:10 AM

ninjajubei,

it is me mirrell, from the other board. i am looking for solutions for you. i am keeping you and your situation close to my heart and in my prayers. mirrell/seoulwoman, seoul is where i am, i am so far aaway.