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AHHGG!! Just feel like cussin sometimes, - Results of PET


bobmc

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Hi all!!

feel like cussin!!

But I won't, wouldn't want to incurr the wrath of the Dave's :):):) remember humor is healing!! specially for me!

Results of PET scan showed hot spot, (very small) in the mediastinum area. OK, so that sucks :x , also confirmed that I have only two small brain mets. That we already new about so thats OK. Now, whats going to happen with the new "hot spot", Don't know ???, Yep, that sucks. I swear, if the treatment for this disease did'nt make your hair fall out, half of us would pull it out anyway based on shear frustration!!!!

So whats happening is that I got wired and called all my docs to discuss this as well as the person at MSKCC thats suppose to be handling the arrangements and insurance. Apparently, what I was told is not necessaryily whats gonna happen and it's gonna cost me some bucks, which is OK if I'm comfortable BUT I'M NOT!! :x So to make this short and sweet, I'm going for an additional opinion at Overlook Hospital, in Northern NJ. They're also a state of the art facility and perform both stereotactic radiosurgery as well seed implants, and WBR. They're also in the same network and group as my original surgeon and lung doc that removed my cancer 2 and 1/2 years ago.

So I kinda feel I just questioned what needed to be questioned, I need to feel right about the treatment, so I'll keep ya posted. But I'm really anxious, Ya know the waiting sucks.

So I'll end with " but for the grace of God here go I"

And, really glad were all here!!!

God bless and be well

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

MRI's taken 12/18/03 - 2 brain mets found- named em Frick & Frack

PET taken 1/5 - hot spot in mediastinum May be cancer??

"Absolutely insist on enjoying life today!"

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Dearest Bob,

Hang on, like you are in your picture ! :wink:

G*d knows I know how hard the waiting is. If you're not satisfied with your docs in short order, let me recommend the Cancer Institute of New Jersey in New Brunswick. When I called for a second opinion, and faxed over a couple of reports, I had an appointment within the week. It's the only NIH recognized Comprehensive Cancer Center in the state (aside from the NJ branches of Sloan Kettering, I suppose).

Also, the hospital facilities are top-notch. Right now, they're mostly at Robert Wood Johnson as the CINJ is still being finished inside.

PM me if you want more info.

Best wishes, and keep the faith!

Barbara

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Bob-

Well, CRAP and Double CRAP!

Not much else to say at this point except I'm glad you're going for the 2nd opinion and that I'm really praying hard for you! You're one of my icons representing humor and courage under the burden of this rotten disease. Big Time Hugs.

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Okay, so you know exactly what youre dealing with now. My father has a mediastinal node. Have you asked about IMRT, (intense modulated radiation therapy) mega doses of radiation, very specific so surrounding tissue is spared; hence less side effects. Actually, my father didnt have any.Thats what they were using on my fathers node till he got the brain mets. Ive mentioned it here before and if you need any other info let me know. We went for a second opinion at Sloan Kettering in NYC and he agreed with how our onc is handling it. He just finishing WBR and if anything is left over they will do stereotactic radiosurgery, but he wont have an MRI till the end of Jan.

We are also going to a doc/nutritionist dealing with alternative medicine next week so his own body will help in this fight. Tomorrow we are back to onc for new chemo plan.

We're praying for you, friend, keep us posted.

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Bob

That does SUCK! Sorry about the news, this disease is just one BIG ride and we never know whats around the next corner. I have heard that adversity makes you stronger, BOY are we a strong group or what! Seriously Bob I am sure you can whip this thing into shape, keep the faith and keep fighting

Bess B

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Well, POOP!

Gee, Bob....remember when a "Hot Spot" was just a happenin' place? Kinda like that ol' country song (can't remember who sang it, but I CAN remember most of the lyrics) "I remember when Coke was still cola and a joint, a bad place to be..."

Find your answers....dig, dig, dig!

My thoughts are with you,

Becky

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Bob,

I'm rooting for you, along with all the others. With a cheering section this large and so widespread we'll make enough noise to cover up any cuss words you might let slip. :)

We take it one day at a time, but when we do it's two fisted and no holds barred.

Best Wishes to another one of my heroes...

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Bob - hang in there. The PET can be a false positive. Also at least it is just be a lymph node vs the liver or other vital organ. You dont need the mediastinum to live ( I never knew I had one before researching for my mom).

Praying that it is nothing. One thing you can ask the Dr about (if you want to know) is the SUV (Standardized update value). This measures the amount of uptake of the sugar. From what I remember a value of 4 is the cutoff for saying it is possibly cancerous. The higher the value I believe the worse it is.

Remember though it can be caused by other things.

But again it is only in the mediastinum it isnt an organ or bones.

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Hey Bob, I'll let ya in on a little secret. God's OK with us getting mad at him every once in a while. He's big enough to handle it. Go ahead and get mad, then get goin' again (I know you will).

On the up side: When I had my bone scan I had a "hot spot" on a rib next to my tumor. Turned out to be nothing. Who knows?

And waiting IS a b****. What I do is try to get REAL involved in something else. Kinda like the old "Don't think about a zebra" idea. The only way to not think about a zebra is to think about an elephant. :)

Good luck!

Dean

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Hi Bob,

I know you can do it. Hang in there. Pulling for you. Peace, take and God Bless.

Rich

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http://www.plwc.org/plwc/MainConstructo ... 08,00.html (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

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http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

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http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

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Hey Bob,

Does your HOTSPOT light up brighter then my HOTSPOT??? Well my dear, I had my CT Monday and I'm doing the waiting crap right now. But, it's true when they say HOTSPOTS can be Infections, Scar tissue, etc... Not always is it cancer! So, I'm going to think positive for you just like I am for me. #()U(@&*%&(#(*&%()$#*%_^(_^($)&(*^&@%@_!!!@$%^&*()_+}{":?>

There I said it all for you !!!

Stay strong my friend, we'll see eachother through! We're one HECK of a powerful family here!

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Hey Bob sense I've become aquainted with lung cancer I learned to cuss. Never said a cuss word in my life that I can remember. Some things just can't be handled any other way, so cuss as much as you want. It cleanses the spirit or at least makes you feel better for a while. Best of luck to you and hope that soon you will be able to say"remember when I had that scare and cussed so much? Sure is nice that it turned out to be nothing. I wonder if the cussing did it?"

All kidding aside you are strong and you will make it through this. Just look how far you have come already. Lillian

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Guest Estrea

I don't blame you for cussin"...I would be saying a lot worse than you are. Please keep those spirits high...that's the way to beat it. Not to mention entering any clinical trial you can!

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