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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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surgery
Well surgery is tomorrow. Have to be there at 545 am! Fine by me just a little nervous i guess. Just drank 10oz of some magnesium lax...gross to say the least hahah. Take care all.
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I hate the Hubble telescope!
2 1/2 year scan passed without remarks = NED. My 2 lung nodules are now definitely classified as benign after no changes for almost 3 years. Thumbs up on that. Thas all dandy and nice of course, what I really need to vent about is that I HATE THAT "#%¤¤%&"% CYSTOSCOPY!!!! What did I do to deserve having the Hubble…
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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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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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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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Dumb Question...
Now that I have kidney cancer, what can I safely drink? I have both of my kidneys so far but since this whole cancer thing started up I have limited myself to water or water with Mio (flavoring) in it. I have had the occasional lemonade. I will stay away from liquor and beer. I used to drink coffee all morning then a soda…
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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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Lupus, Dysautonomia and kidney tumor...
Hi my name is Jackie and this is my first time visiting your forum. I was dx with Lupus after a sudden illness in 2009, which then led to brainstem/cervical surgery last July which then I was told I have severe hypermobility of my spine. I have had awful headaches, low grade fevers, night sweats, severe tachycardia and low…
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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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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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My Votrient arrives on Monday....
So I guess I will start my new journey in the adventures of Kidney cancer! This is my first cancer drug and I am praying for my body to play nice and let Votrient do its thing for a long time with much success. I need to find the bedtime routine so I can sleep through the nausea if there is any. I also found out why the…
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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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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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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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RCC Chromophobe
It is almost that time again when I get my scans to see if the cancer is still gone and I start thinking (and worrying) about it. My doctor said RCC Chromophobe rarely reoccurs and I shouldn't worry about it but I am just curious if there is anyone out there that has a similar diagnosis with recurrance? I was 38 years old…
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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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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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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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KIDNEY CANCER AND BONE CANCER
Hi All, Hope everyone is doing well. I had a question regarding recovery of rod placement in femur bone to support the femur bone. The bone had cancer found after the kidney was removed last year. All went well, surgery was done 1/15/2013 and I have been recovering ok. Lateley tho, the last few weeks or so, I have been…
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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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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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BLKJAK needs positive stories and good vibes!
My husband Brad will be starting on Votrient as soon as it arrives. He was diagnosed with Stage 4 Renal Cell Carcinoma. A 2cm mass in his left kidney has metastacized to his liver and several lymph nodes. We are praying for good results, few side effects, and many many more years together. He is nervous and needs some…
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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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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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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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I don't know what to think
I need a little help with a report. Here is the history, I had RCC clear cell a 2.7 cm Stage 1 Grade 2 tumor removed by hand assisted laparoscopic surgery June 18th all clear margins, thought that was it. I would just have to keep and eye on it, scans every 6 months then every year after that. First CT scan November of…
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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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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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NED
Prelimiary diagnosis July 2012 Partial Nephrectomy Nov 7 - Path results - T1a CT April 9 NED! now to focus on living and being healthy....