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What are the odds?
3 1/2 years ago I was diagnosed with stage 4 RCC. Had my right kidney removed and I am on 800 mg Votrient for just over a year now. So far so good. I am 54 years old. Last week my sister found out she had a 5cm x 4cm mass on her right kidney. They took the kidney out 2 days a go. Her right kidney. The pathology report is…
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Planned CSN Outage Tonight
Dear Users, CSN will be down for routine maintenance tonight from around midnight to 3:00 AM Eastern Time. We apologize for any inconvenience. The site will be up and running as quickly as possible. Thank you for all you do for CSN! CSN_Nick
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Over & Out
Hi, the surgery is omover and the cyst is out. I don't feel too bad. They did it robotic. I feel bionic. many doctor thinks it looked benign. I need to wait for sure. Phew!
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GFR Question for you guys
I had my surgery on October 5, 2012. 11CM T3A Grade 3. I know I am at high risk of reoccurence but so far my scans have been clear. When I had my last scan a few weeks ago it was noted my GFR has declined to 55. I don't have a baseline because all my previous bloodwork just notes ">60". My creatinine is also a bit evalated…
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Possible met to remaining kidney
Hello all, I have been reading previous posts to learn as much as I can from others here. And I appreciate how supportive this community is. Does anyone know about the possible course of action for deailing with a potential metastatic lesion to the remining kidney? recap on my dad's background: primary tumor discovered and…
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Birthday scan
Well, it has been a long wait since my CT on Monday (note it is now Thursday evening in Sydney). My oncologist just phoned - nothing new but a small increase in tumours. She did not have the full report but I hope to get a copy tomorrow. I had my hopes up for shrinkage and feel a little deflated but am pleased that there…
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Scanxiety. Typical I guess.
Next Wednesday I go in for my full scans. It's the one year date for the Everest trial I'm on. So I take my last dose of Affinitor on Tuesday the 18th. Hard to believe a year has gone by already. I'm really anxious. I wanted to put together a party to celebrate finishing 1 year of this drug trial, but I didn't do it. I…
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Brain MRI, Stress test passed--it's a go for IL2
Got a call from the doctor today and my brain MRI from Monday was clear and I did OK on the stress test too. It bothered me to find out that my gfr was 45 which I guess means my one kidney isn't doing such a great job, but the doc says he has taken that into account. Also on Smart Patients I got a study mailed to me about…
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SNOW!
I have about 10 inches on the ground and 10"-14" are expected tomorrow. Fun travel weather for my surgery. Today is another day at the grind at the office....
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Spousal scanxiety
it's that time again; my husband is going in for scans and his second follow-up visit; he's feeling good, gaining weight and muscle tone but has a minor (nothing minor with stage 4) neck issue. he feels a muscle pull when turning his head on both sides of his neck; So, another bone scan is scheduled. he will have an MRI to…
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Some test results back
After kidney cancer in 2012, colon cancer 2013, both primary tumor sites, no spread from either and I am so thankful. All this pain I have in my R hip area the PET scan lit up in iliac crest and my onc thought it could be bone cancer. She sent to me to another onc who does bone cancer only and he done MRI of hip and pelvic…
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Abnormality in my blood work
Hi, I got back my blood work results and all looked to be within normal levels except 2 tests. I wanted to know if anyone has any knowledge on this stuff. My HDL was 61 mg/dl. Normal showed as <40 low >60 high. I guess that isn't terrrible. The one that concerns me is the C Reactive Protein. Mine showed 0.44 mg/dl. Normal…
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father's stage 4 RCC
I will try to post again for help as we still need help to feel positive. I need something that my dad can read to feel like he is not alone in this fight. Some facts on his cancer. In december 2013 during a CT scan of his colon for an unrelated problem they found the mass on his kidney. After meeting with the surgeon, two…
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Clinical Trial-Ipilumab & Nivolumab
Well, after waiting some 4-5 months I finally got all the go heads from the Doctor, Cancer Center, Insurance Company, and the Sponsor. I signed my contract about two weeks ago and tomorrow I start the trial. Get both Ipilumab and Nivolumab every three (3) weeks for 4 sessions.then only one of the two drugs every three…
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Insurance considerations.
Since my family is just in the beginning stage looking for systemic RCC treatment I am wondering if we are going to come across issues with insurance. And i know all insurance is different, but I am curious if any roadblocks with insurance were a problem for anyone here. My dad has medicare and anthem (don't know the…
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Chromophobe RCC and Upcoming Cedars Sinai Conference
Hello everyone, I have been lurking for a while, trying to decide if it was a good idea or a bad idea to join and connect online with others. Well, here I am. My 47 year old husband had a radical nephrectomy (and adrenal gland removed) in October for what turned out to be stage three chromophobe renal carcinoma. His tumor…
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a change in scan schedule
Having mixed emotions. I met with oncologist yesterday to discuss the results of my early January CT's. Initially doc said he wanted me scanned every 6 months. Yesterday, he changed it to every 3 months. According to him, the enlarged lymph node in my lungs is not too worrisome and the 1.5 cm spenule, aka accessory spleen,…
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Presurgical Testing Monday
I have my presurgical testing scheduled for Monday and reality is starting to set in. Sometimes I'm calm, sometimes I'm scared. My husband has been acting like this is no big deal. Well, not for him! I'm feeling blue again. My sister in law had a laporoscopic surgery to remove a dermoid tumor from her ovary. I went to see…
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Informal survey
there have been a few on this board who have gotten bad news from their check-ups lately. my husband is now scheduled for his scans, including another bone scan to rule out any progression from a slight neck rotation issue. my question is whether those who got news of progression, either recently or earlier, had any hint…
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Anyone ever hear of Doxorubicin (Adriamycin)?
Got a bizarre email out of the blue (no idea how they got my name) from a company calling itself "Eurasia" offering vaious inhibitors, including Sutent and Doxo, which evidently is experimental. I am suspicious. ANyone know anything about this stuff?
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Numerous lung nodules - Anyone else have experience with this?
Hello Everyone, I am new here. My dad was diagnosed with clear cell RCC in November 2013 and had a radical nephrectomy. He is in his late 60s. Primary tumor was quite large ~13cm though thought to be encapsulated in the kidney. We are now 3 months out and had a follow up CT scan which revealed metastatic disease to the…
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NED no more :(
Well I just returned from a trip to MD Anderson. I had been having trouble getting my insurance to approve my 6 month scans, so I went to see an oncologist there that specializes in the rare forms of kidney cancer (mine is unclassified) in order to find out my chances of recurrence and how often I really needed scans. He…
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Does my caregiver need to be there for all three weeks of HD IL2?
My wife and I both work at the same place and she's trying to figure out what leave she needs to take. I go in for HD IL2 on Monday 2/24 and get out Saturday and then go in again on Monday Mar 10 for the second round. The hospital does accomodate caregivers on a cot in the private room and she's willing to do that if…
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something my doctor said
Something I read on someone else's post caused me to have a flashback, so to speak, and I remembered something my doctor told me during my surgery consult. It kinda went in one ear and out the other, I guess because I had so much info coming at me. At any rate, once I had this flashback, I referred to my medical records to…
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Change of pace
I was thinking... No Thaxter, the smoke is not from the MJ... I was thinking. Cancer sure does change us. The shock. The panic. The praying and deal making. The acceptance. The short term plans vs. long term plans. At first I dealt with the diagnosis and surgery pretty easily. I expected to get better. No big deal. 6…
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Ron!
How was your first official day of retirement? Hugs, Jojo
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CAT or PET?
During the Super Bowl I was visiting with a friend who was formerly a Xray Technician. He had not heard about my RCC, so as I was filling him in on the details I mentioned that I have my first scan since my surgery coming up. He asked if it was a PET scan, and I replied that as far as I was aware it was just a CAT scan. He…
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Hi de Hi Campers!
It has been a little while since I posted! I had a biopsy some weeks ago which confirmed what everyone with half a brain suspected, the cancer had spread. The doctors are concerned about the rapid growth in just a matter of months, also the spread of cancer to my lymph. The consensus of opinion is that this is very rare, I…
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newly diagnosed on 1/28/14
Hello, Everyone So I was diagnosed with type 1 papillary renal cell carcinoma in my left lower pole. They are going to do a robotic laparoscopic partial nephrectomy on 2/12. I feel very comfortable with this. My problem is this. This past July I was admitted in the hospital for over 2 weeks for E Coli 157, which is a…
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dancing with ned
Well got the great news for my first 3 month scan and blood work.Ned came a calling and everything is great ,hope everyone is well out there.3 month scan again inapril ,can relax til then. Thanks everone for your support. Brian