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New version of CSN
Well, alas, it looks as though the re-vamp is an unqualified disaster. It seems as though someone doesn't know what he's doing. I just pray that it's still possible to re-instate the previous version!!!!!
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i am new to this site and not sure how to post
Found out tumor is larger then original told and report has other stuff in it i want it investigate after the go to bed. I want to wait till after Christmas and my daughters birthday. I want to have all the information first do i can answer their questions. And i just don't know how to throw one more thing at them. My ex…
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A double crappy day
I went in to participate (with my father) in a familial renal cell carcinoma study. My Dad had a partial nephrectomy 9 years ago, and I was six months ago. This was my first post surgical scan, and there is a 2 cm mass on my left lung. Crap. Now, the double crap is my dad has 9 new modules across his two kidneys. They are…
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planned CSN outage tomorrow night
CSN will be down from 9 pm Eastern Time Thursday (tomorrow) until 9 am Eastern Time Friday getting a badly needed software upgrade. You will notice a few formatting changes and enhancements. Most importantly, site functionality should improve significantly. Regards, Greta aka Your CSN staff
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MY EXPERIENCE WITH VOTRIENT...SIDE EFFECTS ECT.
hi all... just wanted to share my husbands experience with Votrient so far hes been takeing it for about 2 months now...his hair turned gray, the roots that is...his beard was gray, untill he shaved when it turned back to its normal color and the third time he shaved it was back to gray...and he is haveing itchy and…
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Scan reports 18 months
I feel so very blessed. I got the results of my scans that were done this month and here continues to be no evidence if disease. This is the 3rd set of scans that have been negative. I will continue with the 400mg of votrient. I am still very lucky to have manageable side effects and will see the oncologist next month.
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Hello, new here.
I'm not sure if this is the right place to post this, but I'm just going to jump in. I'm having a hard time with this whole cancer thing. I don't really know what to think of it. I think, at the moment anyway, I'm considered a survivor. Funny thing that is. I consider myself a survivor of many things. I survived an…
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RCC return after 5+ years
My husband had his kidney removed 15 years ago. Than this August was diagnosed with Stage IV in bone and lung. Has anyone experienced the reoccurance of RCC?
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The current treatment options, from diagnosis onwards
The article below contains nothing revelatory to anyone who already knows a bit about this area but it is a very good conspectus of the current state of play. It's potentially valuable for those just diagnosed and a useful re-cap for the rest of us.…
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Early Christmas Here Too
I don't want to brag, because I know that others have a much harder road ahead than me. But I did get good news at my first 6 month CT this week. Doctor says he thinks I am cured after a partial nephrectomy in May 2012. I only mention it because I know I felt better when reading the good news of others. Some of those old…
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Musings from my little corner of life
Being fairly new to this club, I am finding a part of myself re-awakening with all of my new emotions and experiences. I feel the need to put some things into words. I was originally a journalism major but never finished, instead falling into the world of mechanics and parts, ended up being a dealership parts…
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18 month CT and not feeling lucky...
It has been just less than a year since I have posted last. At that time I met NED for my 6 month scan and felt great. In the last few months, I'm starting to feel like I did when I went to the ER over a year and a half ago for nearly the same symptoms. Today is my 40th Birthday and it is 1AM and I'm sitting here wide…
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Recently Diagnosed?
I stumbled across this board by chance while searching the web for information about kidney masses. About two week ago I was feeling perfectly fine, but I started peeing blood. After being poked and prodded by doctors, I was scheduled to have a CT scan. The next day, two weeks after I started peeing blood, the doctor sat…
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simple nephrectomy not so simple
You may remeber me from posts over the year over my problems after surgery; maybe not, but the update on me is that my problems are most likely due to the metal left inside me during surgery. My advice: if you think something is wrong do not stop until someone finds it. I have been in a special kind of hell for a year and…
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Friends
Hello all, My prognosis is very good, and I'm 4 weeks out from surgery today. I'm on the mend. I'm feeling good this week but last week I had some emotional upsets and some depression. My best friend and I clashed earlier this week and are not speaking to one another now, which is very upsetting. I wonder if this is…
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Ketogenic diet for cancer...
I saw a special on this tonight and there was a man there who had three months to live and gave this a try. He is alive a year later with no cancer and no treatment. Anyone hear of it! May also be called the metabolic diet. http://www.theketogenicdiet.org/the-ketogenic-diet-and-cancer/ Www.nbcnews.com has info on it as…
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Christmas come early
Hello and Merry Christmas to everyone. My Christmas gift for this year has arrived already. It was a big NED on December the 6th. After a removal of left kidney in 2011 and two Cryoablation treatments on three small masses in my right kidney this year,after a complete CT scan, Dr Henry Krebs at St. Josephs in Atlanta told…
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Kidney Cancer Association Patient and Survivor Conference
I got this email from the Kidney Cancer Association today. If any of you are in the North Carolina area and are interested here's the info. I pasted in the url for the PDF of the agenda. It looks interesting. --David ========================================== SAVE THE DATE Kidney Cancer Association Patient and Survivor…
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Payment for clinical trials
OK, here is one for those in trials, and for our beloved lawyers. Remember that I've made lots of jokes but none about lawyers. Last year when I went to Yale, I was pleading to be treated with IL-2 as I thought that was my only chance for survival. As you all know, I was offered a placement in the MDX-1106 trial if I…
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Can someone help?
Since my diagnosis I have been volunteering with Iberman Angels. http://www.imermanangels.org/ The organization matches volunteers with someone newly diagnosed with the same kind of cancer you have/had. I've been matched with 2 ladies with kidney cancer so far and one really needs help. They found 2 spots on her lungs and…
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Definition lifted from another magazine
I have a subscription to "The Family Handyman," and they explained what a Field Editor is/does as a do-it-yourselfer. "Field Editors contribute tips, share their wisdom (and goofs!), answer questions, test products and help us create content for...(the magazine)." Sounds like kidney cancer patients on this board to me.…
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Just curious...
Today I went for my three month after surgery labwork and chest xray. My surgery was back in August... radical nephrectomy...right kidney... got it all... good report. My curiosity is stirred and maybe some of more experienced people on the site can fill me in. I go to the doctor on Monday for test results. I'm just…
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Prognosis is good, why don't I feel better?
Hello all, I had my surgery on November 16, a partial nephrectomy, done laparascopically and robotically-assisted. I am recovering well, though I did try and go back to work part-time this week and I may have pushed it a bit. I have yet to speak with my doctor in person, but we discussed the path lab report over the phone.…
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? Karma?
OK. Here is the thing. I have expressed frequently that I think I am doing well due to Karma. However, I also admit that I don't really know what Karma is. I do believe that whatever it is it only works when it is shared. I am not religious. In any denomination.( I don't know what that means either.) Anyway, I know there…
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Surplus 50 mg Sutent
Started 28 day on/14 day off regimen of Sutent in Jan 2012. My Oncologist lowered dosage to 37.5 mg when CTs showed tumors shrinking (rapidly!) in August. Have 21 pill "surplus" of 50 mg dose. The pills were dispensed in a conventional prescription bottle (not in bubble pack). Cost almost $400/pill but my employer's health…
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I had cancer and part of my kidney removed robotically on October 22, 2012
On October 22, 2012, I arrived at Johns Hopkins Hospital, Baltimore, Md. To have a 1 cm Chromophobe Cancer removed from my right kidney. Dr. Allaf and his great team removed the cancer using a robot in a laparscopic procedure. This was a major surgery, but less invasive, I have seven small cuts on my abdomine, the largest,…
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Interesting article about the many doctors who had their cancer cures stopped!
http://www.examiner.com/article/dr-burzynski-free-to-continue-curing-cancer This is an excellent article and really raises some eyebrows. Makes me feel like getting a petition started to change the laws and even have the FDA investigated. People are suffering needlessly. It sure doesn't feel like a free world when success…
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1year completion
Well here it is. I get my 18th MDX infusion tomorrow. It is now a year of treatment. Can't believe it. I would have never thought I would still be here if you asked me in Dec. 2011. Response has been incredible. Soft tissue tumors are essentially GONE! And there were plenty of them. A couple of painful spine and hip mets…
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Clinical Trials and the Outcome!
I would like to get some feed on any clinical trials and the outcome of them. My husband is on Afinitor 7.5 mg right now and he is doing okay with it. I just want to make sure we are fighting this with the best possible treatment out there and wondering about clinical trials. They have had a few at Duke but none he…
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Mom has RCC 4
My Mother was diagnosed with RCC stage 4 on 12/23/11. She had her left kidney removed 4/2012. Her recovery was fast she was very positive and strong. Had some pain but was given medication to help her. She started sutent end of May, did 2 rounds but it didnot help her at all. She did have side effects like mouth, hand and…