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Advice - Papillary RCC - Mets to Spine, etc. - Inlyta
Hope all are well! I wanted to inquire if anyone can give any advice on papillary rcc and mets spreading to spine. I was told during my December scans that mets had spread to spine as I had two small spots, but no pain. I have continued as active a lifestyle as possible, working on my old tractor and pickup truck, I coach…
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May I Join the Club?
Hi All, Until recently, this isn't a club I had ever considered joining, but a CT Scan for an unrelated reason resulted in a surprise admission ticket. Clear RCC, at 4cm just made it in as a Stage 1A, which is good. Not so good was that the location precluded a partial nephrectomy, so four weeks ago my left kidney came…
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Scan Results!!! Not what I expected to hear!
Well I have my results and they are not good. The Votrient had stopped working unfortunately I have 30% growth, the lymph in my chest is huge and wrapped tightly around my windpipe, leaving little room to breath. The speed at which the Cancer is growing the pindpipe could be engulfed in a matter of weeks. I have been…
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Open Partial Nephrectomy or Radical Laproscopic?
Hi everyone, a 5 cm T1b tumor was found on the lower lobe of my left kidney last week while looking for a kidney stone. Surgery is scheduled in about a month, in the meantime I am scheduled for a variety of tests and imaging to ensure that it is localized and there are no further surprises. My question is the surgeon has…
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New cheap test for RCC?
Just found this while browsing... A urine sample in certainly a fast and inexpensive way to test! I am always looking for the breakthrough that will allow cancers to be detected early and prolong prognosis for all patients! I'm not sure if this is an old idea, but the article is new so enjoy!…
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Another NED for today
Hello everyone, my turn to share good news. My fiance had his 3 months follow up today. Ultrasound is clear, blood work is perfect except for slight liver enzymes elevation (due to hepatitis C). And last chest x-ray he had was about a month ago - he had pneumonia, but no mets :-) So far so good! Next check is in 6 months,…
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Action to Cure Kidney Cancer
I invite everyone to visit the website of an organization called Action to Cure Kidney Cancer-- ACKC. Just google the name and websites will come up. They are lobbying Congress for money to fund research to cure Kidney Cancer. They visited Washington DC this week on March 16 and 17th. I signed a letter to Congress they…
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newbie
Hi All I'm a newbie to this board. I had my right kidney removed nearly 3 weeks ago. It was a 4.5cm ccrcc stage 1 grade 2 so caught early. I'm feeling strong and happy. Everyone in the community has been so good and kind to me but I think I needed to connect with people who understand what I am going through. Everyone is…
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First 6-month Follow-up <<<NED>>>
Hi, all, Just got back with my first follow-up with Dr. Lallas at Jefferson. It was a nice visit; he said everything looked great, no evidence of disease whatsoever and continued to spout that my chances of recurrence were "around 2%." Can't say anything bad about a visit like that. The plan is ultrasound, chest X-ray and…
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The Politics of Kidney Cancer
As far as I know kidney cancer is a strictly nonpartisan equal opportunity disease, but you wouldn't know it from reading various websites of the Kidney Cancer Association (KCA). While the organization does much good work they post virtually every day to articles from The Heritage Foundation or Forbes or other right…
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Need eGFR advice
I was diagnosed with ccRCC last year and had a partial neph last May. The tumor was less than 2cm and the surgeon told me that he only took about 10 percent of the kidney when he removed the tumor. I just got back the results of some bloodwork I had done and my eGFR went down sustantatially from prior tests (I get regular…
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CT Scan Showed Changes
Yesterday I went through CT Scan, CXR and cystoscopy. The CXR and cystoscopy looked fine, the CT scan, however, showed a lesion on my right kidney. This is the kidney that had the tumor 3 years ago in which the tumor plus 1/3 of the kidney was removed because of tumor location. Looking at the CT scan the right kidney…
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wrong events....
Well,...Spent this past week in the finast institution in America. Yale New-Haven Smilow cancer hospital. Short story. Near total loss of right arm. 70% loss of left. Clots in arm and lungs. Tumor growth from base of brain to about T-2 down spinal canal. Around some nerve roots. And rt. brachial plexus. Did not expect to…
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needing prayers
My mom found out nearly a month ago she has stage 4 kidney cancer. Mom has been being treated for arthritis in her hip for months and months. At long last she finally went to er when her drs office couldnt give her referrals or appointments until 2 months out. Mom was hospitalized for a week and found that it has…
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Blood Pressure Medications
Before my kidney cancer, I was told that my weight made it likely I was going to have blood pressure issues "soon". My blood pressure was actually pretty good even though I was overweight before the surgery. It was generally in the 120's/high 70's range. Since my kidney was removed, my BP has gone up some and so now…
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Pain Resulting from Kidney Cancer
Hi Everyone, I had an open partial nephrectomy in January 2012 which was found after complaint to my doctor of right sided pain. I am curious to know how many of you experienced only pain as a symptom of your kidney cancer? A few months ago I started experiencing the same sort of pain again and unfortunately was in the…
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Some of our story I shared online
I started writing at the advice of my therapist. I've shared some of our story (and a pic of 6 months NED from last april) on the Story Wall for the Ken Burns Documentary "Cancer: The Emperor of all Maladies: Feel free to read. Did anyone else here share on the wall? Is anyone going to watch the documentary?…
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numbness
On Feb 16 2015 I had a partial nephrectomy. It started as a robotic assist laparoscopic but turned into an open partial nephrectomy. My question is -Is lower abdominal numbness normal on the side of the surgery. I was cut at waist line from bellybutton to right hip. If this is normal how long could it last?
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possible prostrate infection after kidney removal
Good Morning: I wrote before regarding my husband who had a kidney removed in Febraury. He now has a possible prostrate infection. I say possible because that was the doctors diagnosis. We went in yesterday thinking a uti from foley catheher. Anyway doctor put him on a strong antibiotic which would take care of either…
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just had a nephrectomy, unsure about future care
I had a radical nephrectomy (though just the kidney, no adrenal gland or anything else) 2 and a half weeks ago, to remove a renal cell carcinoma. I know I am very, very lucky since it was caught at 5 cm and looks like it was completely encapsulated in the kidney. Still, I went from not knowing there was even an issue with…
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1st Follow-up Ct
Having my first CT since surgery 6 months ago tomorrow. Wasn't anxious but it got me tonight! I can't sleep a feel like all those little issues i have will lit up on that scan tomorrow. Also bothered that i'll only receive the results in beginning of April, isn't that long?
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Living with 1/2 Kidney for 45 years
My daughter said that a person she knows has been living with 1/2 kidney for 45 years, having removed 1 1/2 of kidneys previous to that. Is that possible without some type of dialisis? My dad is living with 1/2 kidney function in both kidneys due to a drug he took that compromised kidney function. But if you combine 1/2…
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Trial Update
As some of you may know I am enrolled in a trial going on at UCLA in southern ca. I was randomized to the MPDL3280a + Avastin arm of the trial. Next Monday I will receive my third infusion of both drugs. So far the side effects have been minimal except for some severe shoulder pain that I went through for about two weeks.…
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I'm Back...Member for Life
Hi Everyone, I haven't been on the boards in a while (shame on me). It's been a tumultuous year. Diagnosed in Nov 2013 with RCC in left kidney, I had a left kidney nefrectomy in Dec 2013 with 10 surrounding nodes removed. CT/MRI every 3 months since. My wife's father sadly passed of esophogeal cancer August 17, 2014. We…
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total removal of kidney
2015-03-10 Hi: First time posting here. My husband had a total removal of kidney with 3.0x2.0.1.5 tumor by robotic surgery Feb 4, 2015. Foley Catheter was removed last week. This is his third week back to work staying about 5-6 hours each day. He is quite tired every afternoon, sometimes with some pain. I have told him…
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Husband has cancer
Hello: I'm usually posting on the colorectal board, hence the amount of my posts. My husband just found out that he has kidney cancer while we were vacationing. We were getting ready for a dinner/show for valentines day and he was showering and blood started dripping from penis. After getting out of shower he urinated…
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Sigh... Back at Jefferson Hospital...
Hey, guys, Well, I'm posting this from my hospital bed. Some of you may remember how my cancer was diagnosed; for those who don't, here's the Cliffs Notes version: I had a gallbladder attack and the abdominal ultrasound that my doctor ordered led to my kidney cancer being discovered. I'd had another attack back in November…
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Doctors use device for blood clot removal to suction man’s kidney cancer tumors
What a fascinating read. This procedure helped him get into a clinical trial since traditional surgery to remove his tumors would be dangerous. Very interesting. http://www.foxnews.com/health/2015/03/05/doctors-use-device-for-blood-clot-removal-to-suction-mans-kidney-cancer-tumors/
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Chemo/med therapy and RCC
I’ve always been confused about something. It is said that chemo as follow up to RCC is ineffective so it isn’t used unless there are mets. But aren’t those mets RCC? In other words, if something shows up in our lungs or bones and it’s RCC then how come chemo/meds are thought to be effective? Why is chemo ineffective after…
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New Concern
For background, my wife who is 26 was seen last Sept. for kidney stones. They found a mass that was 3.5 x 3.0 x 2.5 cm in her right kidney (RCC). By late October the mass was removed by partial nephrectomy. They said margins were negative and the Fuhrman Grade was only a 1. The Doctor assured us that it was very unlikely…