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Scared to death
just need to vent.. i learned 3/19/2013 that i have RCC and need surgeyr my tumor is small approx 1.5m. preparing for the surgery i am sceduled for pfts may 7th then will find out when the surgery will be and i am really scared.reading your comments have helped hindered me i need to know this stuff . think i am more scared…
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Joining the "club"
Hello everyone! I had my robotic partial nephrectomy on April 18th, 2013 and just saw the doctor yesterday for the path report. Renal Cell carcinoma, clear cell, T1a Grade 2, negative margins. The tumor was 3.2cm and completely contained in the kidney, thankfully. The note says additional tests will be performed to exclude…
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ACOR discontinued? New website?
I received an email from Gerald White today (because I'm on his email list from ordering his book and CD) that indicated that ACOR was being discontinued and a new website called www.smartpatients.com was taking its place? I have been meaning to join ACOR for some time, but hadn't gotten around to it. I was looking for…
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choices
Hi - I have previously posted about my brother, we are in the UK and his sutent appears to have stopped working (had done very well on it for a year). We are seeing his consultant on Wednesday to discuss next steps, and it would appear this is likely to be enverolimus. He had radical surgery, removal of kidney and massive…
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Thank you for helping me help my daddy
I wanted to thank all of you that have been on this forum for the past few months. I learned so much from all of you. Through this knowledge, I was able to ask the right questions when visiting the oncologist with my daddy - as a Southern girl we tend to call our dads "daddy" regardless of our age! Our journey with this…
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"Most Concerning for RCC"
Hi. Rich, 43, went doctor for stomach pains and after ultrasound and CT w/wo contrast, my GP calls and says I havecancer On March 28 around 7pm. Not what I expected to hear. I have an appt. on April 19, with Urologist and don't know what to expect. The mass is 2cm and I was hoping I may find some answers as to what I may…
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RCC Chromophobe bone metastasis...
My one year post kidney surgery CT scan showed a bone lesion on my pubic bone. I was then given an MRI, followed by a bone scan, followed by a biopsy of the pubic bone and one of another lesion in my shoulder - they confirmed that they are RCC cells. I am a male, 48 years old, my diagnosis was in January 2012, stage 4, my…
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everolimus - any experience?
Hi I am writing from the UK - my older brother was diagnosed with kidney cancer in September 2010 aged 55. He was told it was contained and that no treatment should be necessary once his kidney was removed. On that basis his surgery was delayed twice and he was not operated on until January 2011. We will never know if that…
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Dreams
I have been having the oddest dreams since being diagnosed with Stage IV RCC. The dreams might be classified as nightmares. In the past I would be able to wake myself and remind myself that they are only dreams, but now I can't seem to shake them. Weird dreams - like borrowing my friend's classic convertible and then…
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Excercise after radical nephrectomy
Hi there. I am on my 13th week of recovery from my right nephrectomy. i am back to work (office work only) but i am gaining weight. i am already overweight and i wanted to shed those pounds. anyone here knows what excersise i can engage in? i still have pain in my incision and flank. thanks for you time :)
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Surgery - Round #2
Tomorrow I am going through Round #2 of surgery to remove the kidney flakes from my lung. After they removed the kidney and abdominal wall mass, they told me to recover and then they would start on the lungs. Recovery has been great so far. I think I overdid it a few times such as walking 3 hours on the fitness trail and…
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3 Days Post-Op Robotic Partial Nephrectomy Questions
Update from "Renal Mass at 23!?" Hello Everyone! I had my surgery Thursday the 18th in the morning. They removed a 2x3cm tumor from the right kidney. She said it was a little deep in the kidney and affected the area that filters so they had to repair that a little bit. But everything else went well. Because of that I was…
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DaVinci 'Robotic' issues....
This is just an FYI - A story I came across. We've had multiple threads on this forum talking about 'Robotic Surgery' so I wanted to pass this along as an FYI. There are certainly traditional surgeries with complications and issues as well.…
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Anyone Interested??
ok i have been thinking about this for a few weeks now but would any of you lovely people out there in kidney cancer land like to meet up?? we could maybe arrange a little meeting somewhere in the middle for everyone? i know its a bit crazy but hey ho why not?? well i have put it out there to see what everyone thinks!!!…
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The war rages on, but a battle is won (Good news)
Hello, friends. Today I had my first CT scan since starting on Sutent (2 cycles). (Background - 42yo male, Stage 4/Grade 4 mRCC to lungs, thoracic spine, rt kidney. Radical neph on left kidney/adrenal 5/25/12). Here's the update, and quotes are lifted directly from the scan report. "Significant improvement" of the lung…
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We miss you Paula
We all miss you immensely. Please come back to us. Here is hoping that you are here under another name and will read this. FLY.
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Hi All! Checking in!
I've chosen to stay away for a bit to get my head right and to get ready for my surgery. I now wonder why I decided to stay away. I think it was the fact that I was making OTHER PEOPLE uncomfortable (like my wife and grand daughter) in researching and chatting with everyone. They convinced me that I was becoming obsessed…
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Been silent in the week since NED
A week ago I got scan results back, which gave no evidence of disease. This was my first NED; background diagnosed with RCC 5/1/2012; nephrectomy 6/19.2012: path: T1b (5.5 cm) grade 4 with Sarcomitoid differentiation. Six month scans showed a solitary 1cm mass on the lung( upper left lobe); wedge resection on 2/5/2013…
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Hello, from the UK, advice& positivity needed
Hi Everyone, I've been lurking on this site since October last year when we found out my Dad had Kidney Cancer and have found everyones stories very inspirational when at times I have really needed to be positive about the future. Long story short, dad diagnosed at the time with stage 3 grade 4 but were warned very high…
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New member here with possible kidney cancer, Got some questions about telling
The doc ordered a cat scan just before my gallbladder surgery. They found a 1.1 cm complicated cyst/solid mass with an attenuation of 32.5 in my left kidney and a 1.8cm cyst / solid mass on my right kidney with a attenuation of 38HU. I visited the urologists and cancer was the 5th word out of his mouth after introductions.…
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New Fella with questions.
Don't really know how to start sooo I guess the beginnig. My name is Chris and Im 35 been in the Mil for 15 yrs working on jets. 1 day i woke up with orchitis and thay did a CT scan on me and than came the CALL. U all know the one Im talking about haha. Anyway went to see the Onc at Virtua and he seemed very capable. I…
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Votrient
I have benn on Votrient for almost a month. So far other than a bit of nausea and diearea everything is OK but one thing. Nothing tastes right. Can't taste salt. Does this go away?
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VEGF vs mTOR Inhibitors
I know I've asked this before, but I'm still puzzling over this. When I was looking at clinical trials, I took a look at the drugs currently the standard in metastatic disease, and for the most part it was VEGF's until they don't work, then try an mTOR inhibitor. When I asked the oncologists I know why that was the case (2…
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Game Plan Set
Just found out that I am scheduled for a Open Partial Nephectomy on June 13th to remove my 2.5cm tumor. Because of my blood disorder, I will be admitted 1 week prior to surgery and they are planning on keeping me up to 3 weeks after, so basically a 1 month hospital stay.
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Nivolumab/Ipilimumab Trial vs. Sutent?
Hi all, My mom was recently diagnosed with Kidney cancer. They removed her kidney about two weeks ago. The tumors have also spread to her lungs. She is 72 years old and in pretty good health otherwise. She is now weighing the choice between starting Sutent or entering a trial that combines Nivolumab and Ipilimumab. Is…
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SUPPLEMENTS AND TKI DRUGS
As many of you know I am fortunate to have Hans Hammers, a nationally recognized expert in RCC,for my oncologist. Recently he responded to some questions from Susan Poteat on the ACOR KIDNEY-ONC site. While some may have already seen it (Neil) I know others not familiar with the site may have missed it. With Dr. Hammers…
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hypermetabolic lymph nodes
Hi all. I had a radical nephrectomy in February for a 7.4 cm chromophobe carcinoma, stage 2a, confined to kidney. path report negative for necrotic areas and for sarcomatoid features. Recent PET scan shows "hypermetabolic" lymph nodes. My oncologist says this could be mets but more likely isn't because of no enlargement…
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Torisel/Temsirolimus question
Hi all. For once, this question isn't for me. I have a family member who has advanced RCC. He is going to start treatment with torisel on Thursday, and I was wondering if there was anyone here who could tell us about any experiences they had with that particular drug. How bad were the side effects that you had or saw?…
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Causes of Kidney Cancer?
Hello everyone and happy "day after the world ends!" I am doing some research online and doing some reading about the causes of kidney cancer. I really haven't found anything definitive. My urologist could not give me much information on it, except to say it was more common among men, smokers, and the elderly. I am none of…
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Recently Diagnosed Renal Mass...
I'm a 30 year old male in Columbia, South Carolina. In September of 2012 I experienced painless gross hematuria, which was quite a shock. I visited a general practitioner who advised that given my youth and otherwise healthy condition, I likely had a severe urinary tract infection. I began a course of antibiotics, and the…