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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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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…
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Funny bonz...
As I was lying in bed pondering the problems of the world, I rapidly realized that I don't really give a rat's hiney. It's the tortoise life for me! 1.. If walking is good for your health, the postman would be immortal. 2.. A whale swims all day, only eats fish, drinks water, and is fat. 3.. A rabbit runs and hops and only…
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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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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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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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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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New to site - Questions re high dose steroids
Hi all After 2 1/2 years navigating the turbulent waters of mRCC I found my way to CSN. I hear you all are a great group and might be able to offer some suggestions for me. Hubby is currently on BMS936558 + Votriet trial. Responding well to the meds but hit a snag in Oct when he developed pnuemonitis. Took a while, and…
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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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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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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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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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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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Have I mentioned
how much I dislike the high dose steroids? 5 more weeks. The irritability is making us all miserable. Anything over 60mgs ought to come with a dose of happy pills on the side. He drops down to about 200mgs a day starting tomorrow. Sure hope it helps....don't think any of us can take this much longer.
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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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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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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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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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Just wanted to say hello......
Hey Friends, I am guilty of not coming here very often anymore, but think of you all often and just wanted to drop in to say hello. A big warm hello to Fox, TX, MNGirl, Gary, Raj, Rae-Rae, OLG and many others, (Sorry for those I missed!). I am hoping and praying you are all doing well. How is everyone? I hope you all had a…
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Da Vinci
I was lifting something heavy at work and bam! Tremendous pain in my back followed. I went home and could not stand up. Never felt anything like it before. Like I had been shot in my lower back right side. Dr. sent me for and MRI and the rest is history. He said I am very lucky he found a tumor on my right kidney. I said,…
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Trial in Nashville MPDL3280A (PDL)
It's been a long 3 days. I arrived home about 2 hours ago and I cannot tell you how good it is to be here! I want to share my experience with you, but I don't want to get too detailed and bore anyone. Suffice it to say that the scans that were taken on Tuesday showed no NEW growth anywhere, and the spots that they already…
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What's New in Kidney Cancer?
Hi Everyone, I got this link today via social media. It looks very interesting and I thought I would share it. It's subtitled "A Patient-friendly Summary of the 11th International Kidney Cancer Symposium." I've browsed some of it and I'll be reading a lot of the articles. I hope it's helpful to all.…
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Kidney constant dull pain
Hi everyone! Figured since I hadnt been on here in a few months I would check in. Been doing fantastic these last few months. Almost 9 months after having the tumor and grade 1 and 2 removed I have been all over the USA traveling, got a work promotion and have an awesome new boyfriend. The only thing that worries me is…
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RCC Clinical Trials List
I got this link from the Kidney Cancer Association's Twitter page. It lists trials that are currently recruiting:…
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stage 2, clear cell RCC, grade 2, need encouragement
Hi My husband had radical neph 2 weeks ago for 12 cm mass on his left kidney. RCC, clear cell,stage 2, grade 2, no lymph node involvement. Cancer was confined to the renal capsule. Vena cava not involved - no thrombosis. SO, I guess if he was going ot have a tumor this big, so far the test results are encouraging. He is a…
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First 6 month test results are in..
Just a little update and some good news..My results are in and all is fine. Dr says no more tests needed all is clear. So now it's onto living my life again and dealing with some heart issues like my CHF and some gastric issues which are just getting under control again, I hope. Got my finger crossed on that one. So it's 1…
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Tivozanib – Coming soon another New Drug in the arsenal to fight Kidney Cancer
Posted November 28 2012 AVEO Oncology and Astellas Pharma Inc. said it has received approval from The U.S. Food and Drug Administration for filing the New Drug Application for Tivozanib. Tivozanib is an investigational compound with proposed indication for the treatment of patients with advanced renal cell carcinoma. The…
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Low-dose aspirin daily...
Given that aspirin is an NSAID... those of us with one remaining kidney should technically avoid it however I was told by my specialist to take one daily (81 mg) in order to prevent heart disease. It has also been shown, at least in a few studies, to have some cancer benefit. Does anyone else here take an aspirin a day and…