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living with nephrostomy tubes
Hi! New to this board, but unfortunately, long time "lurker" and occassional contributor to the breast cancer board, starting 6 years ago. Being treated for BC mets to the adrenal since last April. Last scan showed hydronephrosis in kidney on other side. Ended up this week getting a nephrostomy tube. Not that hard to…
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survey of nivolumab and other pd-1/pd-L1 drug trialists
Hi, I am a caregiver/advocate for my mother who has stage IV, grade IV, clear cell renal cell carcinoma with rhabdoid features and necrosis. Post nephrectomy she was given sunitinib which resulted in stable disease for several months. The mets are confined to her lungs and are growing very rapidly. She was recently…
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Genetics, chromophobe RCC and children
I was wondering if anyone that is diagnosed with this type of RCC (non-clear cell, chromophobe) has ever met with a geneticist out of concern for their children? I'm not sure we got the best advice from our oncologist based on what we heard yesterday at a conference (brief reference was made that chromophobe may be a…
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I was out partying tonight!
HI All, I went out for a prebirthday celebration tonight with one of my girlfriends. I saw movie (Winter's Tale), then I had dinner at The Bonefish Grill and then out for drinks with a little live music. I did lots of housework during the day, I got home at 12:30 and I feel great!!!! I'm going back to work on Monday which…
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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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New Doctor...learned some things...
It was early Thurs Morning...about 5:45 AM when, while driving to a neighboring metropolitin area to visit a Doctor...I was thinking...I am driving at this hour to see a Doctor...something must be wrong with me....and there is...Metastatic Kidney Cancer. For refersher, in January, I was kicked out of the Familial Kidney…
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Nearly a week since my surgery already?
A little update on how things have been progressing for this newbie. As far as how I am feeling I can say I am still quite sore. My innards just literally feel like they are out of place. From time to time I can feel and hear things shift position in there and that's a little disconcerting. I'm suffereing from a good bit…
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32 years old newly diagnosed 2014
Hi everyone, Been lurking around since the beginning of the year. A brief timeline of my diagnosis is below. 1/3/2014: Went to family doc because of a testicle pain (thought it might be a vericocele) Doc ordered an ultrasound to see what the problem was. 1/4/2014: Had ultrasound, (no testicular issues). They check the…
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Cedars Sinai Kidney Cancer Conference yesterday (Feb 22)
My husband and I attended this yesterday in Los Angeles. We enjoyed it very much and were pleased to hear that the sessions were recorded and will ultimately be available to anyone who wishes to view them on the Kidney Cancer Association's website. I'm not sure when. You can view the list of topics covered in the…
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Some results
We really like the UCSF system of posting results online as soon as the tests are read..... unless, they are so busy and don't get a chance to read them. after checking repeatedly, I finally called the doctor's office who got verbal reports on 2 of the 4 so the bone scan was good as was the pelvic scan; we will have to…
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Any contraindication for a shingles vaccine?
Agewise, I just qualified to get a shingles vaccine. Anyone know of any contracindications?
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Onward and upwards
Surgery was completed in about 4 hours. Negative margins stage I. Just a little sore and I should leave tomorrow. So now its back to waiting for the full pathology. But based on what he saw surgeon feels very strongly it was not responsible for my weight loss. So I still have more tests to go through with after I heal.
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Todd
Todd: By now, you have had your scans and have had you on my mind since my husband has his tomorrow. So, please check in and post your (HOPEFULLY) good results! Sarah
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Good Luck with the Scan tomorrow Todd!
Hi Todd, Just wanted to wish all the best with the scan tomorrow! I will be thinking of you! I fully expect you to come back with a hangover from all the celebrating:) Djinnie x
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Foot Steps
Yes Foot Steps.. can you hear them.? Can you see them..?? Some may be running... some may be jogging... you may not see any running shoes.. heck you may see all kinds of shoes.. both men and women... I am talking about all the Doctors and Reasearchers... in the race to get all these new treatments and drugs to help us..…
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Cking in
Evening all just checking in hoping every1 is doing well.
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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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Robotic Surgery March 3rd
I will be having my first ever surgery (not bad for 55 years) on March 3rd for a 2 cm tumor on my right kidney. I am a snow bird that lives in Michigan in the summer and Florida in the winter and after going to the hospital in Florida for pain in my left kidney the mass was discovered. Because I have lipomas I chose to…
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Afinitor trial @ MD Anderson
Diagnosed now with stage 4 with mets everywhere. Only option is clinical trial using Afinitor. Return week after next for 8 week checkup. prayng for good result, but doc says he can only add months to my life, no surgery option, very aggressive and mets on outside kidney also in liver and maybe lung.. anyone ever do a…
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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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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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Nexavar
Strange question. I have been on nexavar for over a week and doing ok. The thing is, my scalp is tender, not itching so it is not lice, just tender to the touch. It doesn't hurt, like I said just tender. Is this a common side affect? I haven't read where it is so I am wondering. Is this what it feels like before my hair…
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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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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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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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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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MRI and CAT Scan on Feb 7
Hi everyone, It is time for my MRI and Cat Scan and it seems like the time has flown since the removal of my brain tumor on November 13. I still get a little anxious thinking about the results, but I have to tell everyone, I have been feeling extemely well and so happy and thankful for every morning that I wake up feeling…
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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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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…