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THE LATEST FOR ME


RAY A

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Well today I saw my onoc. for the first time. He is a real nice guy. He told me that after he saw the PET scan and the CT scan that he was 99% sure that there was cancer in my adrenal glands so there is no reason to get a MRI tomorrow. So we discussed the chemo treatments that I will be going through. I start tomorrow on Carbo/Taxel once and just taxel for two weeks and one week off and repeat. Then get scan to see results. They also gave me an option to try a new pill out that doesn’t even have a name yet. Take the pill for ten days and only get chemo once every three weeks. The side effects for the pill are a rash all over you body. They never really tried it for lung cancer just melanoma and kidney cancer. It was a tough decision so I asked him " If I was your wife what would you tell her to do?" He said due to my attitude (which I told him I wanted to kick the SH** out of it) he said he would go with the 3 on 1 off. I kind of asked him a dumb question. I ask him what is the outlook can I live 5 years, 10 years. I thought He said about 3 years. I was shocked and said I knew people that are going through this that have lived 7 and 8 years. He said he could not know until we see how the treatments were working and he said we have a lot of other treatments that are coming out and one came out already such as Irrisa And I said I heard it only has a 10% success rate and he told me he just left a patient that has been on it for a year and she is doing well. . He also brought up the longer we stay alive the more and more treatments are coming out. After he left we got to talk to the nurse practioner, she was real nice. My sister told her the she got a feeling that he knew of drugs that were coming out that looked promising. The nurse said yes he does. He was at the conference and came back very excited. SO my Brothers and sisters Wish my luck and I hope I can report in the GOOD NEWS group soon like all the good news I have been hearing has really given me hope. Right now Im kinda in a daze.

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Dear Ray,

One thing that has helped me to maintain my sanity is that I have never asked any of my doctors how long I have to live. They don't know. There are so many promising therapies on the horizon, don't let negative information get you down.

I am wishing you much luck with your treatments. I think you'll do very well, Ray. I'll be thinking of you.

Ada

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Ray - I don't think its good to let anyone tell you how long you can live. You are an individual, you have a great attitude and for every 100 people who live 3 years there are those out there who live longer and who's to say you aren't the one person who will live 20 more years???? Remember the quote I see so often on this board: No cancer is fatal 100 percent of the time! You know the worst case scenario, try hard to concentrate on the best case.

You have an attitude much like my husband's - you are strong guys. Attitude is half of this! And all of our prayers and thoughts! We are now over 400 strong and too loud for God to ignore.

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RAY!!

YOU CAN DO IT MY FRIEND!! YOU can kick the SHI* out of this, you know you can. Just don't let that mentality ever leave. KICK THE CRAP OUT IT!!! YOU CAN!!!! You are a survivor already, and everyone will be praying for you!! (STRONGEST MEDICINE IS PRAYER)!!!

I will be praying for you (((((RAY)))))

HUGS YOUR WAY!!

Rana

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Ray,

I have every confidence you will skew the statistics. Beat this thing!! You may want to consider going for the MRI because most chemo doesn't cross the blood/brain barrier. I would feel better knowing if I had mets to the brain or not.

Keeping the Faith,

Mary

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Ray,

Sorry to hear the news, but it does not sound too bad. It sounds like your onc is hopeful and willing to work with you which is obviously good. Is there a chance at all for surgery and chemo? Below is an article saying that surgery is an option sometimes.

Lung cancer. Special treatment issues.

Detterbeck FC, Jones DR, Kernstine KH, Naunheim KS; American College of Physicians.

Multidisciplinary Thoracic Oncology Program, Division of Cardiothoracic Surgery, University of North Carolina, CB #7605, 108 Burnett-Womack Building, Chapel Hill, NC 27599-7065, USA. fdetter@med.unc.edu

This chapter of the Lung Cancer Guidelines addresses patients with particular forms of non-small cell lung cancer that require special considerations. This includes patients with Pancoast tumors, T4N0,1M0 tumors, satellite nodules in the same lobe, synchronous and metachronous multiple primary lung cancers (MPLC), and solitary metastases. For patients with a Pancoast tumor, a multimodality approach, involving chemoradiotherapy and surgical resection, appears optimal provided appropriate staging has been carried out. Patients with central T4 tumors that do not have mediastinal node involvement are uncommon. When carefully staged and selected, however, such patients appear to benefit from resection as part of the treatment as opposed to chemoradiotherapy alone. Patients with a satellite lesion in the same lobe as the primary tumor have a good prognosis and require no modification of the approach to evaluation and treatment from what would be dictated by the primary tumor alone. On the other hand, it is difficult to know how best to treat patients with a focus of the same type of cancer in a different lobe. Although MPLC do occur, the survival results after resection for either a synchronous presentation or a metachronous presentation with an interval of < 4 years between tumors are variable and generally poor, suggesting that many of these patients may have had a pulmonary metastasis rather than a second primary lung cancer. A thorough and careful evaluation of these patients is warranted to try to differentiate between patients with a metastasis and those with a second primary lung cancer, although criteria to distinguish them have not been defined. Finally, some patients with a solitary focus of metastatic disease in the brain or adrenal gland appear to benefit substantially from resection.

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The doctor said he doesnt consider surgery because its in both adrenal glands and he doest think thats a option. I would have to be on drugs for the rest of my life and the cancer will still be in my body to pop up some were else.

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Ray A.

I think your assertive attitude is going to stand you in good stead while doing the chemo. It sounds as if you have an onc that is really on the ball and staying current and that you have confidence in him...that is a good pairing. Keeping you close to my heart and in my prayers--GO GET 'EM, RAY :!:

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ray,

just a few tid bits I have picked up with mom on the Carbo/taxol cocktail

Taxol causes joint pain so pop the darvocet like m&M's if you have too. it also causes anemia so drink drink drink.

if you ever get full head radiation then the blood/brain barrier is somehwat breached and chemo can enter the brain. Not that you have brain mets. I am just including the information.

oh and one more thing. Taxol is mighty powerful and mom has had great success with it, so I have a good feeling you will too.

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Sounds beatable to me Ray. We'll be doing the chemo thing together it seems. This is round two for me, round one wasn't so bad. Of course I'll be getting different chemo this time. I might as well try as many different ones as I can. I always thought that variety was the spice of life,as they say.

I plan to be back at work full time by October.

OK, let's kick some cancer arse and then go fishing.

Sam

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Ray, buddy, how is that twitch coming?? Your doc and nurse are right-there is new stuff coming out all the time. Treatments now are so much more advanced than 10 years ago. Attitude is is the difference. When I was Diagnosed I researched and saw the horrible statistics and started thinking I only have a year or a couple of years left and then I said to myself-the hell with the statistics. Statistics do not apply to me, they never have. The only thing that cannot be accomplished is what you tell yourself cannot be done. Roll with the chemo, it effects everybody differently. I have done pretty good with it just fatigued all the time and have to drink constantly because.........well, email me privately if you want to know why for that one. I figure even if mine does come back, or if it truely is not all gone then all I have to do is wait it out for a couple of years and there will be a cure. Like Sam said lets kick some cancer butt and go fishing, come to think of it it's a good idea to go fishing while the battle is on-just stay out of the sun while on your chemo. You can do it Ray, keep the good thoughts.

By the way, you getting a port?

David C

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Hey Ray!

Sounds like you got a good doc. there; and I know you got a great attitude; Your right, you can beat it!!!!; My prayers will be with you.

God bless and be well

Bobmc NSCLC - stage IIB - left pneumonectomy- 5/2/01

" absolutely insist on enjoying life today!"

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Dear, dear Ray,

DO NOT LISTEN TO STATISTICS - ONLY GOD KNOWS WHEN OUR TIME IS UP!!!!!!!!! Based on stats, my dear husband Bill would be in heaven. He was diagnosed in Nov 02 - given 2-6 months.... No treatment has worked yet and he is feeling fine. His attitude is great and I know that this has alot to do with it. YOU WILL BEAT THIS FRIEND!!!!

Blessings to you as always,

Peg

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Ray

You have been on my mind the last several days so I knew you'd be posting.

Just want you to know that last Oct the Onc said I had about 6 months to live because they found a lesion on my liver. Well, after a PET and liver biopsy the spot proved negative for cancer. On my Apr CT scans the lesion spot was totally gone. And............the best part is that I'm still alive.

It will work for you, too! Go fishing with Sam and drink a glass of wine for me.

Good Luck and God Bless - I'm praying for both of you.

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I almost posted yesterday to find out how you were doing. It sounds like you have the right attitude and youve been given such good advice above. Things change with cancer every day, we all know that. Just had to let you know youve been in my thoughts and prayers.

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Ray, one more thing. Music Soothes The Savage Beast!!! Bring a walk-man or a disc-man to your chemo sessions. You can tune out the surroundings and be in your own little world. It worked wonders for my mental state while taking chemo. I listened to Shostakoviches 5th Symphony for most of my chemo sessions. I would be glad to send you a copy if you would like, it is an awsome Cancer fighting symphony, you can see the cells dying by the thousands.

David C

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