bobmc Posted January 7, 2004 Share Posted January 7, 2004 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 , 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!! 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!" Quote Link to comment Share on other sites More sharing options...
BarbaraL Posted January 7, 2004 Share Posted January 7, 2004 Dearest Bob, Hang on, like you are in your picture ! 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 Quote Link to comment Share on other sites More sharing options...
Don Wood Posted January 7, 2004 Share Posted January 7, 2004 Sorry, Bob, that the saga continues. But, I agree, hang in there, buddy. Don Quote Link to comment Share on other sites More sharing options...
Tiny Posted January 7, 2004 Share Posted January 7, 2004 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. Quote Link to comment Share on other sites More sharing options...
LindaMRG Posted January 7, 2004 Share Posted January 7, 2004 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. Quote Link to comment Share on other sites More sharing options...
berisa Posted January 7, 2004 Share Posted January 7, 2004 Bob, you are in such high fighting spirit with no doubt that you must be the winner. You can do it.! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 7, 2004 Share Posted January 7, 2004 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 Quote Link to comment Share on other sites More sharing options...
Ry Posted January 7, 2004 Share Posted January 7, 2004 Well I have it on good authority that it's ok to cuss in that chat room . You want to meet me there sometime and test it??? I am pulling for you bob. Rochelle Quote Link to comment Share on other sites More sharing options...
Snowflake Posted January 7, 2004 Share Posted January 7, 2004 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 Quote Link to comment Share on other sites More sharing options...
Fay A. Posted January 7, 2004 Share Posted January 7, 2004 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... Quote Link to comment Share on other sites More sharing options...
john Posted January 7, 2004 Share Posted January 7, 2004 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. Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted January 7, 2004 Share Posted January 7, 2004 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 Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted January 7, 2004 Share Posted January 7, 2004 Hi Bob, I know you can do it. Hang in there. Pulling for you. Peace, take and God Bless. Rich ************************************************************* The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / United We Stand, Divided We Fall / That’s The Key ************************************************************* http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (PLWC Feature: Financial Support Resources) http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals) https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy /Sign the Petition) http://www.cancersymptoms.org (Oncology Nursing Society) 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) http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free) http://www.drugs.com (Drug Information Online) http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education) http://www.nlm.nih.gov (Unites States / National Library Of Medicine) http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia) http://www.google.com (Great Search Engine) http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients) http://www.cancer.org (American Cancer Society) http://www.cancer.gov (Cancer Information Service / NCI) http://www.cancerresearchcenter.org (Cancer Research Center) http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR) http://www.cancerhopenetwork.org (Cancer Hope Network) http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders) http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library) http://www.lungusa.org (American Lung Association) http://www.ama-assn.org (American Medical Association) http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer) http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder) http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net) http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory) http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research) http://www.patientadvocate.org (Patient Advocate Foundation) http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects) http://www.cancerlinks.org/lung.html (Lung Cancer Links) http://www.cancer-free.com (Cancer Free Connections) http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite) http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page) http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary) http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages) http://icare.org (ICARE / The International Cancer Alliance) http://www.vh.org/index.html (Virtual Hospital) http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues) http://cancernews.healthology.com/focus ... cancernews (Cancer News) ************************************************************ If I Could Catch a Rainbow: If I could catch a rainbow, I would do it just for you, And share with you its beauty, On the days you’re feeling blue. If I could build a mountain, You call your very own, A place to find serenity, A place to be alone. If I could take your troubles, I would toss them in the sea, But all these things I’m finding, Are impossible for me. I cannot build a mountain, Or catch a rainbow fair, But let me be what I know best A friend that’s always there. Author Unknown ************************************************************* Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 7, 2004 Share Posted January 7, 2004 Bob, So sorry to hear the latest news. I know that you will go after this problem aggressively, just as you always have in the past. You have my prayers friend, and of course God's blessings. Peg Quote Link to comment Share on other sites More sharing options...
cathy Posted January 7, 2004 Share Posted January 7, 2004 Bob, sorry your test results were not what you had hoped for. I just wanted to let you know I'll be thinking about you often and hoping for the best. Quote Link to comment Share on other sites More sharing options...
luvmydog2 Posted January 7, 2004 Share Posted January 7, 2004 Bob, Sorry to hear that you have hit a "small pothole" in the road. Hang in there and get your wheels to moving again and kick the crap out of the beast that is causing all the trouble. Hang in there friend and I will be praying for you. Good Luck. Bruce Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted January 7, 2004 Share Posted January 7, 2004 Hey Bob, Hang tough. Distract yourself long enough to enjoy today. We're all pulling for you/with you. But you knew that. Hugs... MaryAnn Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted January 7, 2004 Share Posted January 7, 2004 bo, I aam so sorry about this latest crook in the road and you are right- the waiting stinks. Glad you are getting another opinion. Will keep you in my prayers as usual. I have confidence you can beat this too. You have such a wondrful attitude. God Bless Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted January 7, 2004 Share Posted January 7, 2004 well my mom always used to tell me I have a mouth like a sailor so if you want me to do the cussin for you I will. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted January 8, 2004 Share Posted January 8, 2004 Here's to hoping for scar tissue. If it is yet another challenge, I hope and pray it does not interfere too much or too long with your determination to enjoy each day -- and that you beat it in no time. Lisa Quote Link to comment Share on other sites More sharing options...
Connie B Posted January 8, 2004 Share Posted January 8, 2004 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! Quote Link to comment Share on other sites More sharing options...
karen335 Posted January 8, 2004 Share Posted January 8, 2004 Bob, Connie just confirmed what we talked about in chat Tuesday. On the PET an infection or scar tissue can show up as a Hot Spot. We are praying real hard for you. Hang in there... Peace and God Bless Karen Quote Link to comment Share on other sites More sharing options...
lilyjohn Posted January 8, 2004 Share Posted January 8, 2004 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 Quote Link to comment Share on other sites More sharing options...
Guest Estrea Posted January 8, 2004 Share Posted January 8, 2004 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! Quote Link to comment Share on other sites More sharing options...
candee Posted January 9, 2004 Share Posted January 9, 2004 Bob, Sorry to hear about this dilema of yours. The additional opinions will surely get to the bottom of it Have always contended that life like a carnival and I just don't know what ride I will get on next, but with this disease I don't even know what the rides are. Sure does bring new adventures, to the state of living! Sending positive thoughts and wishes! Blessed Be Quote Link to comment Share on other sites More sharing options...
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