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Affraid
Hello, I'm 33 years old and had a radical nephrectomy of my right kidney in January 2013. It was stage 1 clear cell renal carcenoma.. My left kidney is functioning just fine right now. I've had 2 scans since surgery which were ok! I do however have a couple nodules on my lungs which my doctor said were " nothing" but this…
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waiting, waiting...
Scanxiety in effect! Had a core needle biopsy yesterday for a breast mass they've been ingoring for 2 years (and that had lit up on my PET last Oct), but my recent MRI showed growth, so Dr Evil stuck a staple gun in it yesterday (just kidding, was a special needle), and now it's off to path....and I wait most…
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Care and feeding of the head...
Hi All..! Time for me to post on my latest "Care and feeding of the (my) head"... So one of my main interests or is that obsessions, is having my bike race on the IOM. I have been going almost every year to the IOM since 2000. And last weekend was crunch time.. I did 3 all nighters in a row.. needless to say Monday I was…
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like father like son
There are words to describe my frustration at doctor's office this morning but they aren't suitable for social media. In fact, I'm sure I'd be banned from this site forever if I said what I am thinking. Suffice it to say, I could make a sailor blush. Today was to be my 1 year post-op with urologist. Per last visit, he said…
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The latest from the AACR
Hi All..! I had not posted much here, and it is time.. I just got back from the annual AACR conference in San Diego. American Association for Cancer Research. No, I won't be typing that out again here.. I attended this conference as a Survivor / Advocate, which got me there for FREE..! There were in the range of 25,000…
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It's been quite a week
Hi all! As some of you know, we have been doing some renovations in the house. For quite a while now we have had no water in the kitchen, no stove, no oven. Every inch on the main floor has junk on it. Lots of stress! Work has been insane as we are very short staffed and we are headed into super busy season. In addition,…
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Scans
my husband had his 3 month scans this morning; the doctor's office called to let us know that they look good. slightly elevated creatinine (probably the coffee he drank just before) but other than that (1.3 to 1.5), no evidence of disease. the appointment is on Thursday but the news was good; now, we can leave for Hawaii…
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Help reading dad's path report.
The sample is largely necrotic with only rare epithelioid cells with malignant cytologic features. Immunohistochemical staining shows focal cytokeratin CAM 5.2 staining, and negative CK7 staining. A CD10 stain is non-contributory. The morphologic features are suggestive of a renal cell carcinoma primary, but given the lack…
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Rapid Heartbeat
Since my partial nephrectomy in March I’ve developed periodic rapid heartbeat. I never had this issue. I could be just sitting or resting and wham, it starts speeding. My doc examined me today and said yes, it was beating too fast and wants me to see a cardiologist, which I’m going to do. Anyone experience anything like…
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Waiting and waiting.........
Hey all Had chest CT at beginning of week as a run up to op and I have been calling specialist nurse every day and results are not back. Also I have no date yet for op and no follow up appointment with urologist booked. I am stressing about all this, did you all have to wait and wait for any news? Perhaps I am being…
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A little late asking - but
does anyone know just how they reconstruct our kidneys after a partial?
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Adhesions, neuropathy or is it just anxiety
Its been nearly 3 months since my partial nephrectomy and I find myself experiencing more pain in my torso than I ever did before I had the nephrectomy. These pains really only started to become bothersome over the past few weeks. Right after the surgery I didn't really hurt at all for several weeks. My brother thinks its…
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Just having a hard time right now
I first want to begin and tell you that this forum and you people lift my spirits all the time. I have some good laughs reading your stories and jokes. I appreciate you all. I have had pneumonia all of april into last week. My lungs are weak ,I have COPD, asthma, and I am seen every 3 months by my lung doc and my lung…
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Travel Insurance
Hi All... OK, just set up my summer travel... And I wanted to get the travel insurance. I know this has been brought up before... But, so I was reading the insurance policy info and the policy is available for people with pre-existing medical conditions. So, I called the 800 number.. The regular policy for my trip is like…
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2ND CT Scan-Prelim Results
This CT Scan compared to the first which is now 16 weeks old. right Lung- One nodule gone all others at or slightly smaller lymph nodes- same size or slightly smaller No new growth I guess the CT Scan now goes to a "specialist" who will actually measures out everything and gives me a final % but no new growth, no…
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Please help...lymphatic system involvement
Hi, I'm hoping someone can provide me with any information they know about involvement of kidney cancer with lungs/lymphatic system. My sister was diagnosed with Stage IV RCC about 2 years ago. At that time it was our understanding it was just in her lungs and liver. She started on Votrient and had an excellent response…
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Genetics
I was wondering if any of your kids have had kidney cancer. I have been told by some drs its not hereditary and some say it can be.
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On the lighter note
Within two months following my surgery my hair turned white. I am not talkin grey here --I am talkin Santa Claus terrirtory. It was amazing just how many people remembered that TV show " Twin Peaks" from 20 years ago and gave me a hard time. This annoys me because while I may have been overweight I had a pretty good head…
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Bloodwork done, 6 month post op scans one week: UPDATE: NED
UPDATE: My husband ended up getting verbal scan results over the phone Friday afternoon. Our planned weekend of "distraction" at Disneyland while we waited for results turned into a celebration of NED. 6 months down. I'll take it! It has been 6 months since my husbands radical nephrectomy for his T3a 7.5 cm chromophobe…
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Hopefully, Just A Short Break From Votrient!
I had my first full MOT at the Cancer Clinic this mornng, It was a 2 1/2 hour appointment. Unfortunately my liver enzymes are out of wack, I have reached level three in toxicity. Anyway! I have to come off the Votrient for one week, then get retested. If there is little change I will be retested each week until I come up…
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Extreme Fatigue attacks under Sutent
Anyone else have a few days of extreme fatigue attacks during breaks in Sutent? I have been having them for months. I consulted with my oncs today and they have a theory I wanted to share with any other Sutent users who might have had the same problem. I may have been causing the attacks myself by stopping the blood…
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14 months post op...now feeling some discomfort
Had a partial done 14 months ago. My first scan at 6 months post op was clear. About 2 months ago I started feeling some discomfort on my left side (where my partial was done). Not really pain, but definitely some new sensation that feels like it's not on the surface where the scar is, but rather deeper. Is that common to…
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Votrient working
I wanted to share the good news that my latest scans show shrinkage in most turmors so the Votrient was working. Unfortunately, he had to take me off of it a week and a half ago because my liver enzymes were too high. He wants to wait until they come back down and then try me on a lower dose. It has also affected my…
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Rib removal (Not talking about BBQ)
Has anyone else that had an open surgery had a rib removed? My 11th rib had a good portion of it removed during my surgery to allow better access to the kidney (I had a partial) My surgeon told me in advance that he might have to take all or part of it out based on how easily he could reach things. My understanding of…
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Remembering 8 years ago
This the anniversary of the "Cancer news." On 4/27/06, I had gone to my new PC for the annual check, which is required for any medication renewal. As an afterthought, I mentioned the periodic (every couple months) epicosedes of nausea and sometimes vomiting I'd been experiencing since the previous fall. There always seemed…
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hoping for a fix
Hey y'all! I've been so busy lately...what with seeing Cher in Cleveland, and all. Yep, Cher. She was AMAZING! I saw Bruce Springsteen two weeks before Cher and Billy Joel two weeks before "The Boss". I'm hoping to be down and out for the next 2-3 months...literally speaking, so I'm doing all I can, while I can. Tomorrow…
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Are there any runners?
Had a right partial 3/3 and have just started training for summer races and tris. again. Just wondering if anyone is as well.
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ipilimumab and nivolumab Trial Updates
As many of you know about 1 month ago I fractured my right arm and had to have a rod placed through what was at the time an un-diagnosed met of my RCC. The fracture went right through the area and well a 3-4 week period of pre and post surgery complications/testing with extreme pain was had. Not much fun at all. The good…
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Getting a little frustrated
I started having an intermittant cough over the past few weeks that has been slowly increasing in frequency. Last week I started getting some chest pain associated with it so I went to my PCP to check up on it. He listened to me breathe and had a chest x-ray taken which came back clear. So he diagnosed me with bronchitis…
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Scanxiety May 2014: or where is it?
Scans are tomorrow: CT of the chest and MRI of the abs and pelivis. For the first time, this is not the center of life right now...I will miss a few hours of work, and probably go back. I have no reason to suspect anything other than NED. I expect NED. Emotionally, for the first time, I am not treating this as a big…