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planned CSN maintenance this morning
Planned maintenance will be done on CSN this morning between 5:00 and 8:00 Eastern Time. There may be one or more outages during this time. We apologize for the inconvenience. Greta
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No eating
My husband has had RCC since November 2011. On January 13, 2012 he had his right kidney removed and the IVC repaired as it had traveled up the IVC and was touching the heart. 7 weeks later they found it had moved into the lungs and was put on Sutent. July of 2013 the right lung was clear and the left lung had shrunk about…
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HDIL2 treatment centres
Hi all i am investigating IL2 treatment and as it is not a treatment available in Australia I am trying to find the best treatment centre and wanted opinions from anyone here that can advise who I should approach in the US regarding costs etc. Thanks for your help. Sue
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Checking in
I thought I'd pop in with an update on my latest scan. NED for RCC...yay. It's been 3 1/2 years, give or take, since my diagnosis and everything has been good so far. I had stage 2 grade 3/4 clear cell, highly necrotic, 9 cm tumor on my left kidney, removed in Oct of 2010. On another note, I do need follow up ultrasound…
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2 years (21cm tumor)
It's been awhile since I've last been on here. Life takes you all over and sometimes I forget about all this. I have my two year follow up in a couple weeks and so far everything has been great. Not sure if any of you remember, but I had a 21 cm tumor removed. My lone kidney struggled for a little while to keep up, but has…
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Scared
Hello Everyone, I just joined this site because I was browsing for information and found many answers on here. I am a 42 year old woman and I have a 1 inch tumor on my right kidney and it has to be removed. I will be scheduling a robotic partial nephrectomy soon but am really scared. Do you all have any advice or stories…
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One major battle ahead!!
Hi There, I have been having a pretty crappy time since my last post. I had been suffering incessant coughing so my GP sent me for an X-ray which showed a tumour in the left lung. I had been awaiting a full body scan at that time, so this was rushed forward. I then went back to see the Oncologist to discover that not only…
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blkjak's ct update
All of his tumors have shrunk. And there are a lot of them! So the bladder cancer chemo is working, indicating that this might be a transitional cell kidney cancer. The results were great for only five weeks of treatment. The dr said that they rarely see shrinking this early...usually if it's going to work they see stable…
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How/When doc's deliver results of scans
In the blink of an eye, we are heading into 6 month scans. It's so bizarre how the whole ordeal can seem so far away, yet so present at the exact same time. Anyways, my husbands scans are scheduled 9 days before his appointment with the oncologist. I was just wondering what to expect regarding delivery of scan results.…
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GFR Question for you guys
I had my surgery on October 5, 2012. 11CM T3A Grade 3. I know I am at high risk of reoccurence but so far my scans have been clear. When I had my last scan a few weeks ago it was noted my GFR has declined to 55. I don't have a baseline because all my previous bloodwork just notes ">60". My creatinine is also a bit evalated…
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2 weeks in Ipilimimab and Nivolumab Trial
Two weeks in and all blood tests are fine but this week I have really felt tired and just cant seem to catch up on my sleep/rest. Body just aches and I have had some issues with being a bit lightheaded at times. Hands are starting to peel which I was told could happen. 2nd infusion on March 4. Are these side effects…
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Happy Anniversary?
I think? 3 years ago today I finished my workout and had a good 2.5-3 mile run. I have exercised regularly since a teenager. I've run for over thirty years. (and are my legs tired!) Anyway, I had decided to approach my 60's by trying to reach a peak in my fitness. My mission statement was that when I died, I wanted to be…
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New Member
Hello, I’ve been trying for ages to open an account here and never got a password or notification yet it kept saying I was a member. So finally after opening a third email account (since it thought I was a member it kept saying that email address is already in use) I got a password. I just want to say that I’m in awe of…
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2nd scan after surgery(creatinine levels way to high)
well ,I think my scans hopefully went ok because my blood work didnt.My creatinine levels were way to high. Looks like dialisis and on the list for kidney transplant.Looks like the only kidney left isnt working to good.Anyone been in this situation.Can the levels be helped with pills ? See my kidney specalist on next…
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Papillary Renal Cell Type II
Hi, I was diagnoised with Terminal Renal Cell Type II Cancer, As of June 13th of this year. Back History. My journey down this road began: June 29,2008 I woke up and went to the bathroom and as I turn to flush the toilet I got the worst shock of my life. There was nothing but blood. I knew immediately I was in trouble. We…
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upcoming surgery
How do I post a question? I will be going in for surgery April 1.
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Decisions to make
I saw oncologist this afternoon and everything is still great. Labs are normal. He is leaving the decision up to me as to if I want to stop the votrient. I have been on it 2 1/2 years and scans have been clear since December 2011 with exception of a couple of very small nodules in my lungs that are being read by…
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Marketing research
Has anyone been contacted by a medical marketing researcher?
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So far so good on Torisel...
I haven't posted in a while so I thought I would share my progress - A little background - I was diagnosed in January 2012 - I had a 14.5cm tumor in my left kidney. It was removed and found to be chromophobe RCC. At my 6 month post surgery scan nodules on my thyroid were found - thyroid cancer - unrelated, thyroid removed…
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Got my pathology report!!!
Went in today to get my drain removed and my pathology report had just come through. Clear cell RCC PT1a, pNX, grade two I freaked out for a second before the doc had a chance to explain the report because it said I had a positive margin on the renal capsule. Apparently, my tumor was poking out of the side of my kidney, so…
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Future of Oncology & care
Interesting article..... http://www.cnn.com/2014/03/11/health/cancer-care-asco-report/
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I could use some anti anxiety help, it's scan time
Hi! I'm Britt, I am 27 and was diagnosed with Rcc a year and a half ago, since then everytime I've gone for a scan my anxiety level has increased. So far they've been Ok (knock on wood). Today though just the thought of scheduling the CT almost brought me to tears. The tumor was very small... Maybe 2-3 cm, hadn't moved…
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Can't get comfortable at night
Anyone else have a hard time getting comfortable in bed at night? My back hurts no matter how I try to lay. Heck, I even dream about not being able to get comfortable and then wake up with more back pain. It's not a pain like something wrong but like when you hurt your back lifting something. Thanks Cindy
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I'm back, surgery a success
Had surgery last Monday, came home on Wednesday. Funny but the pain and tugging was not where any of the incisions were so I asked for a binder that really helped. In the 1980's Alabama was my farvoite band so when I heard they were doing a concert at SeaWorld on Sunday I became determined to make it there and I did. I…
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This poor kid beat kidney cancer 4 times and now is dying because a drug company won't give him a dr
This is crazy. You have to read this story to understand. A fellow kidney cancer patient has beated this disease 4 times and is clear of cancer but has a blood infection that a drug will fix but is not being given by the company because it is not approved by the FDA and they say they have "no money" yet the government just…
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Mass in Kidney
HEllo, I am coming over from another board. Today I got a call from the Dr stating that my MRI showed a mass going inside my kidney and he have to remove the whole kidney because of where it is growing. I started having issue with peeing heavy amounts of blood. I did a CT scan and ulta sound but it did not get a good…
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Surgery tomorrow 3/6/14
Have to be at the hospital tomorrow by 10:00am and I have my open partial at noon. Then I can move on to more waiting (for pathology results). Thanks for all the support everyone!
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Not out of the woods
Hi Everyone, I had my post op appointment today and I found out my tumor was an Angiomyolipoma. They told me that on the phone but all I heard was benign. Now that they know what it was they want to follow the cyst or tumor in my other kidney because these Angiomyolipomas can grow fast, impair kidney function, and can…
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The lessons we learn....
In response to Fox's post about putting some thoughts out there.... I'll post a few topics that have been on my mind. This post is an open question to the forum of lessons learned or gifts received as a by product of the RCC journey. _____________________________________________________ For me, I've come to realize every…
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Numero Uno Scan post Operative.
So tomorrow I go in for my first post operative scan. Barium sulfate cocktail at 10 pm followed by another in the morning. Chest and abdomen. Now the concerning part besides the obvious is that this appointment had been set up since November. I returned from a business trip this week, and I had not heard anything about…