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URGENT: Dad given no hope. Please help!


needhope

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Hello Everyone,

My dad is still in ICU after a month. We just met with his oncologist and critical care team and they said in so many words that he was going to die.

A month ago, we brought him to the emergency room because of the shortness of breath. The oncologist believes that his cancer is causing interstitial fluid to build up that it can't escape his lungs, thus causing them to stiffen and not work anymore. He has nodules throughout his lungs and apparently it is trapping the fluid. He is currently on 95% oxygen using a ventilator. His oxygen saturation levels are around 95-96%. The doctor asked did we want to take him off the ventilator. We said no but if his heart stops he will not be rescusitated (sp?). So now we are on the wait and see road, praying for a miracle.

Question: Is there a procedure to get rid of interstitial fluid?I know there is one for pleural fluid but the oncologist and pulmunologist said there was absolutely nothing we can do for this type of fluid build-up. Therefore, I am desperately trying to find out who may know something so that I can save my Dad.

While reading the old messages I did see that a rare side effect of Tarceva, which was what he was on, could be Interstitial Lung Disease. Don't know if this has anything to do with dad's case. If you have any information that may be of some help, please let me know. We are running out of time. Thanks a million!

Sincerely,

Rochelle

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I am so sorry. The only thing I can tell you is that it is also a rare occurrence with Alimta-- I believe Stand4hope (Peggy's) husband died from this. Maybe you could search her posts - it seems she put quite a lot of information on the site about this at one time.

Rochelle2

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Here is what I could find out by various links;

1)http://www.mayoclinic.com/health/interstitial-lung-disease/DS00592/DSECTION=8

2)http://www.lungusa.org/site/pp.asp?c=dvLUK9O0E&b=35436

hope something helps Let me know if anyhting else I can do or look up.

can not get a lot of answers only descriptions of the problem. Let me know wha tewlse I can do whenand if possible Saying a prayer.

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Hi Rochelle,

I am so sorry to hear you and your Dad going through all of this, and so sorry for everything. My Dad is Stage IV as well, with a May 1 diagnosis, so though your situation and relationship with your father is preciously unique, I can partially imagine how all of this must feel for you and your Dad. My father and I experience something similar every day, or, more accurately, every minute, every second, since time has become so condensed and collapsed for us now and we are really never guaranteed another day.

First, let me say, I am praying for both of you. I'm not sure what has happened between your post and today, but I do know that 3 days can be a few lifetimes (both good and bad) in Stage IV, so please let us know how you are. Also, I am new to all of this, so please verify everything I say with all of the others here.

Yes, there is a procedure called pleurodesis that can remove some of the fluid from your Dad's lungs for symptom relief. It is "minimally invasive" and you or your Dad can calculate the risks/benefits of it. My Dad had it done, though his doctors initially resisted, and his response to that and a start of Tarceva was encouraging. The fluid built up again (it's the cancer "shedding"...my term), but it offered him some relief and ability to keep food down, sleep, breathe. Has your Dad had the fluid drained?

Again, I am so new to this, but it also seems as though the initial round of chemo on your Dad may have been too harsh, and that his immune system may have been weakened by it. Has your father responded to anti-biotics for pneumonia? If the Tarceva isn't working, is there another "gentler" chemo combo you could consider? Hopefully Dr. West and others have pointed you toward issues/approaches your oncologists may not have mentioned yet.

I know from experience, that the fight must be fought for as long as the patient (the Dad!) wants to fight it. And our Dad's know, they really do.

I also know that cancer is a very, very strange animal. You didn't go looking for it, you didn't want to meet it, you wish you never had, you'd rather help it gallop it's way toward extinction, but, when you dig deep (deeper than you ever thought you would/could/or should have to), you do get a sense somewhere that --though 100,000 times more ugly-- the cancer is not more indominable than the spirit; it just is not.

You doctors don't know how much time your Dad has left, but you should know that your Dad is not his cancer. And your relationship with him is far, far greater and more powerful than the cancer.

My Dad and I were sitting in the hospital room one day after a terrible series of days where we had to fend off not only the disease but doctors who seemed more defeated than the patients...and the sun was shining through the window and the sky had sooooooo many blues in it...and we were doing crossword puzzles...and everything seemed so okay. Right then and there, I knew that no matter where we were in the world and no matter what his condition, we would be doing something as silly and ordinary and completely fulfilling as crossword puzzles. No rocket launching, no literary masterpieces, no medical breakthroughs, maybe even no "defying the odds"...and, oddly enough, for the first time in so many days, minutes, seconds, that was more than enough. And I couldn't have asked for more.

Rochelle, this is long-winded, but I wanted to tell you that you are not alone. You and your Dad are unique and wonderful and not alone.

I will be rooting for you!!!

Best,

Yirol

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