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Low Vitamin D levels
I've been instructed to take a "D3" supplement of 5,000 IU/ Day - my levels are at 23 so they need to be raised. My question is - I was reading online at WebMD possible side effects and one of them has to do with the kidneys. Does anyone know anything about this or is this just an issue once levels are back up and normal…
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Vacation Soon..
Hi All..! It is that time of year again.. well getting close.. Vacation time.. That is, unless my Dr visit next week turns bad.. not likely... So, I will be off to the Isle of Man.. my racer is on a ship headed that way... But, thought I would share a picture of my new rider at the TT Races from early June, 2014. Do ya…
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Los Angeles - Kidney Cancer Support Meeting
Just got this one. I may drive down for it.. if so hope to see some of you there... Ron Kidney Cancer Support Group - Los Angeles Monday, July 14, 2014 5:00 pm to 7:00 pm Speaker: Ora Gordon, M.D., Medical Genetics Topic: "Genetics and Kidney Cancer" Cedars-Sinai Medical Center Samuel Oschin Cancer Center, Room AC 1100…
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RPLND - Retropertineal Lymph Node Dissection Surgery
I have been advised by my Dr that I need an RPLND and suggesting to have this within a month, by the end of July. I have not received the exact date, but advised within one month. I am having this done at UNC Lineberger Cancer Institute and my Dr advises he does approximately 30 of these a year and he will be utilizing…
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Sigh....two years post op, and swimming still hurts
I had my hand assisted laproscopic nephrectomy two years ago. Today, we were at a pool party. I went in the water to cool off...and tried a little swimming. Every movement resulted in pain where the main inscision went through the peritum. Sigh. Any excersize I try that places any stress on the abdomin results in pain. But…
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Scan
Got my scan results Friday. Sitting inthe room waiting for the the doctor to come in I still had the feeling of doom. The doctor opens the door looks at me and said. "What are tou doing here? Your scans are fine. they show shrinkage. Stop trying to analyze things. Only scans can tell if the Votrient stops working." So from…
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The Games I play..
OK, so I was in one of my smart alec moods... I had been having some issues that concerned me. My internal brain was thinking my syptoms could mean my throid is going funny. So, instead of e-mailing my Dr and asking for Thyroid testing... I just gave the symptoms and asked, that since I was coming in next week for scans…
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Post surgery hernia
During my post surgery follow up appt I asked my surgeon's PA if I had a hernia above my belly button. She told me that it was too soon to have a surgery related hernia because it had only been 1 month. She also said that the hernia risk period is from 3 months post surgery to 6 months. Does anyone know why that period…
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hmmmmm liver test elevated
So I HAD RCC chromophobe. Stage 2, 7.2 cm. Right kidney removed in 2010. I just had my 4 year checkup and my urology doctor said congrats everything looks good on CT and xray, see you next year AND next year is 5 years so after that I don't think you need to come back. Sooooo that freaked me out. Yeah 5 years but never…
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dumb doctors
May 22 my husband had kidney stones. We have now met with 3 oncologists Finally the 3rd one says we are stage 4. Advanced and aggressive mestasized. kidney cancer but he is waiting for the pathology slides from the 2012 peration to determine if the primary is clear cell or papillary. So we have to wait another week. Or two…
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IVC Wall invasion
HI, Just wondering if anybody on here has experienced IVC thrombosis invading the wall. And also whether you went on to develop mets?
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Olde Timers
Just an observation.. lately I have been reading some older posts, there is a LOT of knowledge out here..! And in reading posts from up to 10 years ago.. I see some people that have not posted in a very long time. This is a concern... but then I click on their name and see that most are still here and have been on line in…
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Surgery Preparation
Hi all – My surgeon really needs better admin support. I am a week away from surgery (likely full nephrectomy) and I don’t have any information regarding preparation. Being over 50, I take a 81 mg aspirin everyday but stopped that but am not sure about other medications I am taking such as Simvastatin, HCTZ and Lisinopril.…
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My Interleukin 2 Experience
I wrote this entry in my personal journal but I decide to post it here on CSN. Some people may find this post informative or entertaining. Sorry if it’s a little long. - BDS Background. On May 28th 2012, at the of age 52, I was diagnosed with Stage 4 Renal Cell Carcinoma. I have been on the drug Votrient (Panzopanib)…
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Another surgery on Friday
My SIXTH in less than 2 years. :( . I had a bad MRI in late April, then a benign biopsy, but my surgeon wants to remove a suspicious tumor in my chest wall. It's grown 1cm since the May 20th bio. I was shocked when on this past Wed she scheduled me 9 days hence. That is not the usual pattern of waiting forever! Backstory…
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Another scan.
Had a call from hospital last week to say Phred is having another mri this week. Don't know why. Thought it was a mistake but apparently not. Do know that for someone who is supposedly fine now he hasn't been feeling so good. Someone must have looked at his other scan and decided his pancreas is a knee or something. More…
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Recent surgery
Divinci partial left nephrectomy June 10th. Still swollen, very sore. I am 60 years old. Wonder if this is normal or not? Thanks, God bless
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WISHING YOU A HAPPY BIRTHDAY! on Sunday SINDY!
PARTY TIME !!!!!!!!!!<<blow Have a fabulicious birthday tomorrow Twinnie. Mind you don't go twisting yourself any further out of shape with any outrageous dance moves! Love and hugs:) Djinnie xx
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Question about change in wording on CT Scan
I recently had my 2 year ct scan and on the 6 previous scans involving the lungs it would say No significant abnormality and under impressions it would say no evidence of disease and now its been changed to say- no dominant lung lesions- stable. The doctor assures me it means the same thing but I find it strange. Has…
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Checking in....
Well guys, I was diagnosed on 29th April 2014 with what my urologist said is that my 2cm lesion on my kidney is likely to be 80% cancer and............ I'm still waiting for surgery. calls to my consultants secretary have resulted in "probably mid July or August" my concern is that it may spread, my consultant said this is…
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What's typical
So I was feeling a little more at ease with my doctor but today they called to set up surgery date and it's September 8th. Is that the norm on the wait for surgery? I was just kind of taken aback mainly because of my leg pain and the fatigue when I had talked to the DR last night he had seemed like it needed done sooner…
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food and other essentials
I am reading and learning a lot. Here are items on my list to buy this weekend for my husband that I wanted to share with other newbies. Please if anyone can suggest quick/easy grab & go items. I'm lacking in things he can pack for lunch. Plus anything else yall swear by that I can get. Most of these came from MD anderson…
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FLMA Advise
Anyone take FLMA? It is my understanding FLMA (Family Medical Leave Act) is offered by employers to allow people to take off up to 12 weeks annually with no pay and be guaranteed their job when they return. It is also my understanding that it doesn’t need to be taken consecutively. Today my thoughts are that me and my…
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Blood Pressure
I have been on Votrient for 16 months. Hair went white BP went up. Now hair is going back to normal/gray and no longer need BP medication. Are these the sighns that Votrient isn't working anymore. Scan in August.....
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Oncologist visit and next step!
I had a visit with my ever friendly Oncologist yesterday, Dr War. I took my scans, both my recent and previous scan with me for comparison. I was on the edge of my chair whilst she was going through them. The little tuts and groaning noises she makes while looking at them, certainly don't help the stress levels. Anyway!…
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Life Saved by Ineffective Primary Care Physician
After seeing my primary care physician several times over a 6 to 8 month period for a runnig related injury I convinced him to do some tests. He was content to just keep telling me to take time off from running. I thought I needed an MRI of my pelvic area to see what was going on but he suggested getting a CT Scan. Good…
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Hi, Everyone...Newly Diagnosed
Hi, Everyone...I had my right kidney removed on May 22nd 2014 at MD Anderson. I had a 6cm (in greatest dimension) Clear Cell tumor. The path report stated 6cm Clear Cell Stage 1 Grade 2 confined to kidney. Also, no invasion into renal vein, renal sinus or perinephric adipose tissue. No lymphovascular invasion indentified.…
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Update since DX in December
Hello all, Dave was diagnosed with stage IV clear RCC on December 31, 2013. Since then he started Sutent which wasn't working as the cancer progressed into his bones. He was then in and out of the hospital the entire month of May and the beginning of June for infections, severe constipation and most disheartening, extreme…
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Doctor's Admin Team is not top notch
Have people encountered problems scheduling and getting call backs? I feel when I was "prospect", the level of service was much better...now that I am a client (surgery is scheduled in 2 weeks) ..not so great service. Also, what should I expect in the pre-op for a laparoscopic (likely complete) nephrectomy? Thanks all -…
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Sometimes
sometimes I wonder how so many doctors, trained for years, can be so damned incompetent and irresponsible when dealing with this disease. if we had stayed with my husband's first docs, he would probably be dead. despite pain in the hip that was not relieved and got worst, despite an increase in creatinine, some hyper…