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New card-carrying member
I just wanted to introduce myself. I'm a 43-year-old postop day four now out from a 15% partial nephrectomy for a 12-mm, T1a, Fuhrman grade 2 clear cell renal cell carcinoma. Like many of you, I ended up here completely by blind luck. Less than a month ago, I had some weird abdominal pain going on, classic for gallbladder…
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A little heartbroken
I guess things just seem to be getting worse for me.Already lost my right kidney now my left one has a tumor that is about a 1.4 cm.Will find out today how the surgeon is going to remove it .I guess things could be worse but it is very hard for me to be thankful right now, I will keep everyone posted when I can.Have A Nice…
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Mother diagnosed with Stage IV RCC
My mother (who just turned 70) was hospitalized for 3 days last week to do tests after her MD found alarming results on a chest x-ray and CT scan. Then in the hospital they did a contrast CT scan of the kidney and lower chest and then an MRI of her spine and a bone scan, as well as multiple blood tests. She had small…
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The Thing from outer space v the biological programming error
Some of the books I've been reading lately have the same underlying theme - a great favourite: clear thinking. The excellent "Bad Science" by Ben Goldacre contains material flagged by the eponymous title but the book is really about correct thinking. Charles Merrett's "The Origin of Anxieties" could have taken its title…
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not Von Hippel Lindau... now what?
I had genetic testing done to see if I had the Von Hippel Lindau gene, my urologist swore that is why I got kidney cancer at 28. Well guess what, I dont have the gene. So what the Eff does that mean? Why did I get kidney cancer at 28? Did I do something, eat something, breath something? If just doesn't make sense. I wanted…
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Big decision
Hello Everyone, I hope someone can advise me please. I have had a 2.5cm tumor under surveillance for the past 18 months.I had my last CT scan last week which shows that it has not grown. As I see my specialist on Monday, should I tell him to remove my kidney or just keep up with the watching and waiting. It worries me that…
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So Happy To Have Everyone Here !!
Hello Friends!! I have been gone celebrating my 50th wedding anniversary, and as soon as I came home, turned on the computer to see how everyone is doing. So happy everyone is keeping up the fight!! Life is good!
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SARCOMATOID CHROMOPHOBE RCC
I'm looking to compare notes with anyone who has Chromophobe RCC that has become sarcomatoid. I don't want to be knocked down in the rush, so please don't all flock here at once :) In the event that there's anyone out there who has heavily necrotic, metastatic, sarcomatoid chromophobe RCC I'd be happy to make contact…
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Fishknees good luck thread....
Friday the 13th of April will be a good luck day for Fishknees as she will get rid of her unwanted parasite once and for all. She will no doubt do well because she knows what to do. She is smart...she found this site, she asked questions, she was upfront with her doctor, and after she will follow their instructions for the…
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Who's next
I hate to ask who is next for their surgery. I don't have anyone on my calendar. I ask this because I think it is me. I am next Friday the 13th. My new lucky day. I hope there is no one else before me. That is a good sign. Please let me know if you are having surgery soon so I can say a prayer for you. Fishie
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The beauty of health insurance Membership card
Yes I am one of the fortunate ones to have health insurance,I believe my lifetime benefits are about 1 million dollars which at this time leaves me with about 900,000 left give or tae a few dollars.Now to my point,I have had to spend the whole damm week worrying whether or not my cancer has returned or not because on 4/09…
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One Year Cancer Free
One year cancer free today. It's has been one year since my radical nephrectomy and I'm happy to report that I'm cancer free. I remember sitting in my kitchen by myself signing on to this site while my family slept in their rooms alittle over a year ago. I never felt so alone. I posted a short message not really expecting…
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What to expect, determined T2A, one week after surgery
Well we are one week after surgery for my husband, full removal left kidney and mass. We just received the pathological results yesterday. His mass was malignant, and it was 7 x 6 x 5.5 cm. No spreading to lymph node, urinary normal, veins normal, confined to his kidney. He said it is "T2A, stage 2". His creatine (sp?) is…
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shrank by 50%
GOOD NEWS! GOOD NEWS!! I got the results yesterday from my 2nd scan. The tumors have shrunk by 50%! Now to keep fighting to get rid of the other 50%. He does want to reduce my dose to 37.5 a day. The side effects were pretty rough this time around. He is also hoping at some point in the future to do interlukin II. I pray…
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Leg Swelling after kidney removal?
Has anyone had any leg swelling after their surgery? Mom had her surgery A week ago on Thursday and her legs have been swollen for the past 4 days. She is having a bit of trouble breathing as well when she walks. None of this before the surgery... Thank you!
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Disappointing HDIL2 News; MDX 1106 with Sutent/Votrient Clinical Trial may be next step
John (and I) met with Dr. Hammers today after John's scan to see if the HDIL2 had been successful. He said the scan reflected a mixed response, with most of his lung mets showing some growth, but one met showing a slight reduction. So--bottom line--no more HDIL2. As way of history, John had received 14 doses in the first…
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Study
The hospital just called and asked if I want to participate in a study. They did not go into detail. They just said that they would talk to me at my blood typing on Thursday. The guy did say that my doctor said I was eligible. I don't know what it involves but I guess I will find out Thurs. I tried to find out what it was…
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Universal Cancer Vaccine
I tried to post the link but I could not. It is in The Telegraph, Thursday April 12, 2012. "Universal" Cancer Vaccine Sounds very interesting. If someone can post the link I would appreciate it. New things everyday it seems.
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looking on the grim side but keepin hope alive
sorry havent been on in a bit got results not lookin real good found three at esophagus,one at top of lung one at diaphram, 2 or 3 goin down back and one where my kidney was just removed can you believe it speechless to say but life goes on went to the radiation dr they gonna start radiation on my arm did i mention its in…
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Tuesday is fast approaching .... I am ready...I think
Tuesday at noon is my lap robotic partial neph. Thanks for all the tips for a comfortable (as possible) recovery. I assume when you are put under there is no recollection. Has anybody had their procedure video taped? I am going to the University hospital and of course signed the waiver that they may use this as an…
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hubby's pathology report received today
Doc says it was all contained in the kidney but I have a question. Do you mind if I post the report and get some feedback? Is there a way to attache it here??? probably not. Furhman nuclear grade 2 Clear cell renal cell carcinoma TNM descriptors: N/A Primary Tumor: pT1b Regional lymph nodes: none resected Why were no lymph…
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Limelifes CT report not the best
Hey everyone got called into the docs office today and was told there was a abnormal growth on the left kidney ,needless to say I feel like I just took another left hook from the devil.I have to go in Friday for an MRI to try to establish what it is ,of course doctor said not to worry. Since it could be a lot of things,not…
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Nutrition after nephrectomy
After having a right, radical nephrectomy on 3/12/12, my doctor has stressed that I need to be very aware of optimal solitary kidney health. All I have been told is to avoid contact sports, tea, spinach, nuts, chocolate and all colas. This list seemed very vague. Any more specific resources, recommendations regarding…
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dx with clear cell kidney cancer need all information i can geta
WOuld like all information i can obtain on clear cell kidney cancer just had left kidney removed on 3/28/12 and this was thte cancer type. If any one has had this diagnosis please reply with information
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Surgery date April 30
Just got brave and set my surgery date today..Now all I have left to do before the big day is the pre opt appt's. Feeling tired but a little better now that I have made the decision to go ahead with the surgery.. LD
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Social Security Disability and Stage 4 Kidney cancer
I'm not sure if this has been posted before. You might want to log on to or call your Social Security office and find out about this little known fact. I found out from a friend who pasted on from Kidney cancer. If you are diagnoised with stage four Renal Cell Carcinoma.You are eligible for Social Security Diability. Here…
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Maybe a silly question...
Here's what might sound like a silly question. If having elevated BP is a sign that Sutent is working, then if you take more BP medicine and lower your pressure, are you counteracting the Sutent?
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Limelifes first CT scan 4/09/
Hi everyone yes my first scan is Monday ,yes my tumor was 5cm and 2 grade so I know the odds are in my favor,I was told at the time of my surgery I had a 80% chance of never having to deal with this cancer again.So I keep thinking what if I'm in the unlucky 20%.I used to feel sorry for myself only to join this website and…
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Nodules in lungs after Kidney Cancer
Hi everyone, You may remember I posted a while ago about my mom having breathing problems. She received some unfortunate news that she has nodules in both her lungs. They are going to do a needle biopsy next week to find out for sure if it's from the kidney cancer or if by chance it's from her appendix she had taken out…
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Gerald White - "Three Months to Life" MAARS CD
Just received Gerald White's book (signed with a nice little note) and MAARS CD, and I enthusiastically delivered it to my husband who was watching television Can't say he shared my initial enthusiasm as The Masters was on. And my excitement was short-lived when I realized and voiced, "I don't have a CD player in the…