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New Member with questions


Jen

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Hi Everyone:

I want to say I think this website is amazing and so are the people on it! I feel so strongly for anyone trying to fight cancer and I am learning that lung cancer does not get the recognition it deserves.

My father was diagnosed with Stage 3B adenocarcinoma on May 9th of this year. To say that the family is severely devastated by this is an understatement, which I'm sure you can all well imagine. Luckily, we are very close emotionally and in locality (central Jersey). My father stopped smoking 11 years ago. His cancer is in the right lung and it has spread to his hip and spine as well. Because of this, he is told he is not a surgical candidate.

I think the question we are asking ourselves now is, is he getting the absolute best treatment he can get. His oncologist knew in the beginning of treatment that his right lung was partially collapsed with fluid in it. She decided not to do anything about it because she wanted him to begin chemo right away. Meantime, 2 months into the chemo my father's entire right lung collapsed and he had such difficultly with tremendous fluid build up that he just had a catheter surgically implanted, which he now has to wear all the time. His oncologist had originally put him into an experimental program and she now feels this was not working because of the complications he encountered. She is now going to switch him to taxotere. She feels if the chemo is successful, the fluid build up may diminish and the catheter can possibly be removed.

We were given the impression from the nursing staff on the oncology floor of the hospital, that lung collapse and fluid build are very common in this type of cancer. My concern is that had this Dr. been proactive in the beginning and removed the fluid could this whole situation with the catheter have been avoided? His lung has come back about 50% now, but the fluid is obviously still a big issue. I am trying to urge my father to get a second opinion from Sloan-Kettering. We only live an hour away from this hospital that is known for it's cancer treatment. He seems very concerned that they deal with many very dangerous clinical trials. Has anyone had any experiences with this hospital and have they been positive or negative?

Any feedback you can give is greatly appreciated.

Thank you & God Bless,

Jen

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Jen-

When my husband was diagnosed this past December, the first symptom he had was sudden shortness of breath, which come to find out was cause by fluid on his lung. Our Oncologist insisted that he have the talc pleurodecis done before anything else. They inserted a tube (under anesthesia, drained all the fluid and blew in talc...the talc irritates the linings of the lung so that they scar and seal together, therefore eliminating any space for the fluid to build up. He had this done 1/24, was in the hospital for 6 days, then he came home with the chest tube for a week. Once they removed this, she started him on chemo and the chemo did shrink the cancer enough for the lung to completely re-expand (it had come back about 80% after the procedure) and the fluid was just about no-existent and obviously what ever was there had shrunk because the tumor was irritating the lining of the lung, creating the fluid.

He has had no shortness of breath since...just when he walks up the stairs fast, but for that matter, so don't I !

Just thought I tell you our experience... my prayers are with you !!!!

Kathy

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Jen-

When my husband was diagnosed this past December, the first symptom he had was sudden shortness of breath, which come to find out was cause by fluid on his lung. Our Oncologist insisted that he have the talc pleurodecis done before anything else. They inserted a tube (under anesthesia, drained all the fluid and blew in talc...the talc irritates the linings of the lung so that they scar and seal together, therefore eliminating any space for the fluid to build up. He had this done 1/24, was in the hospital for 6 days, then he came home with the chest tube for a week. Once they removed this, she started him on chemo and the chemo did shrink the cancer enough for the lung to completely re-expand (it had come back about 80% after the procedure) and the fluid was just about no-existent and obviously what ever was there had shrunk because the tumor was irritating the lining of the lung, creating the fluid.

He has had no shortness of breath since...just when he walks up the stairs fast, but for that matter, so don't I !

Just thought I tell you our experience... my prayers are with you !!!!

Kathy

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Jen-

When my husband was diagnosed this past December, the first symptom he had was sudden shortness of breath, which come to find out was cause by fluid on his lung. Our Oncologist insisted that he have the talc pleurodecis done before anything else. They inserted a tube (under anesthesia, drained all the fluid and blew in talc...the talc irritates the linings of the lung so that they scar and seal together, therefore eliminating any space for the fluid to build up. He had this done 1/24, was in the hospital for 6 days, then he came home with the chest tube for a week. Once they removed this, she started him on chemo and the chemo did shrink the cancer enough for the lung to completely re-expand (it had come back about 80% after the procedure) and the fluid was just about no-existent and obviously what ever was there had shrunk because the tumor was irritating the lining of the lung, creating the fluid.

He has had no shortness of breath since...just when he walks up the stairs fast, but for that matter, so don't I !

Just thought I tell you our experience... my prayers are with you !!!!

Kathy

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Dear Jen,

So sorry to hear your dad's sad tale, but there is hope there for him. Although I don't personally go to Sloan Kettering, I know they're one of the top rated cancer centers in the country, probably in the world. Their reputation is excellent, my friend was treated there and she is doing just fine. Try, if you can to look at their website (i'm not sure of the address, but maybe www.sloankettering.org). I live in NY and found my dr. thru my brother-in-law, so i wound up at Beth Israel with great care. I might have gone to Memorial when it all started, but my insurance doesn't participate there. However, i have NO REGRETS where I go.Please feel free to e-mail me if you wish. I wish you the best.

Joanie

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Hello Jen, glad your here! :)

I think your very right in your thinking and I would highly recommend a second opinion. I live a bit north of you in Sussex county. I had my second opinion performed at the Sloan- Kettering facility in Dover, NJ. They were extemely comforting and very professional. I like the fact that my case was reviewed by a team of doctors. I was a bit torn on if I should have gone to Sloan in NYC but their faciclty in Dover worked for me. I was operated on at Morristown Memorial Hospital. Their cancer facility is also state of the art with very experienced doc.'s and the latist in equipment and methods. I also hear that the Robert Wood Johnson cancer center in New Brunswick is excellent but have no experience with it.

I had a left pneumonectomy performed a bit over 2 years ago and needed no chemo or radiation, ( as of yet anyway ), so I can't help you there. But if you want names of Dr.'s or other info., or even a place to lunch let me know ! In any case your dad will be in my prayers.

God bless and be well

Bobmc - NSCLC- stageIIB- left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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I wanted my dad to go to Slone, too. But he liked his dr. too much...and it when we handled the brain mets with Gamma knife, we went to Mem. Sloane Kettering in Mercy hospital in Nassau county. I must say that what I like about Sloane is that from research my sister and I did, it seems that they see more LUNG CANCER patients in a month than many onc. see in a year! So we figured they'd have the most up to date treatments. If your dad is up to it, a second opinion wouldn't hurt. Keep us posted, and good luck. I live on Long Island, not too far from you. Take care, Deb

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Hi Jen,

My Aunt is currently being treated at Memorial Hospital and she is happy with her treatment (she has extensive SCLC). :cry:

If it's only an hour from you I would check it out...no one can place you in a clinical trial without your consent...

Best, Lynn

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Hi Jen,

I believe a second opinion is needed for any serious illness. The doctors will not do anything without your father's consent. Please urge him to go so that you will know everything has been done in your power to help him. An hour away in not far at all. Good Luck and God Bless.

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Here is some the sloan website

http://www.mskcc.org/mskcc/html/44.cfm

They do clinical trials but they also would use the standard treatment

I am sure. In anycase, clinical trials may be something to consider since standard treatment is not that sucessful for advanced stages.

Some clinical trials are just the addition of supplements such as EPO (procrit) and vitamins to standard chemo, so all clinical trials certainly are not dangerous.

Clinical trials are done in phases. Phase I-Phase III. Phase III trials will be safer since they have done the safety and does studies already.

It wouldnt hurt to get a 2nd opinion at least you have another option and no obligation to go into a trial

Take care

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