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Lurker with questions
I have been lurking for many months, want to introduce and ask questions. I was diagnosed with Sarcoidosis (autoimmune) in 2002 in lungs, lymph nodes, skin and suspected in heart and kidney. Sarcoidosis causes granulomas (nodules). This has complicated every single aspect of my health. When I do not feel good it is blamed…
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Recurrence
I had a partial nephrectomy on my right kidney to remove a 5cm rcc back in apr 2012, i went in oct to have my 6 month follow-up and they saw a cyst 1.9 cm and did a ct scan and it did not light up so doctor wanted to watch it. i went this past tuesday for a us and it said that the cyst was mildly complex and grew to 2.5…
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DIET -- brilliant 18 minute TED talk, free on YouTube
Neil (Nano Second) drew attention to this talk yesterday on ACOR and it's so good that it would be a shame if our CSN community didn't also get the heads up. It's well-reasoned, well-justified and oh, so dramatically illustrated by the personal history of the lecturer! http://www.youtube.com/watch?v=KLjgBLwH3Wc
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On CABO (not Cabo San Lucas) CABOZANTINIB, COMETRIQ
http://kidneycancerchronicles.com/some-background-on-cometriq-cabo-with-regard-to-kidney-cancer/#comment-895 Dena Battle has just posted the above on Cabo, Chris Battle's most recent weapon used to fight his cancer. Anyone who has been following Chris knows what he has been through. In fact, a couple of his more recent…
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IL-2 worked fantastically
Hi All, My husband's latest scan showed no sign of disease. His scans came out all clear. He was Stage IV- RCC patient with mets to brain and lungs. Age- 32 years March 2012- Diagnosed with Stage IV RCC April 2012- Left Kidney Nephrectomy May 2012 - Cyber Knife Brain Radiation july 2012- First Cycle of IL-2 , took 10 and 9…
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Why we are here...
I pursposely baited you to read this... no apology here... this is a story...and not Cancer related per se... but... OK, many decades ago, I live outside of Detroit.. I worked in a motorcycle shop... which means in the winter time you had snowmobiles to financially survive.. One day a big black pick up truck comes up to…
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Another New Doctor :-(
Received a call from my Family Doctor that my kidney function numbers have been going bad the last two tests so he wants me to see a nephrologist (sp). (Why aren't words like that in the spell checker? ) I said a "What?'. Then he explained. I guess it is to be expected when you loose one kidney the other one has to work…
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2 Surgeries==> then IL-2 ==> now Votrient/Pazopanib
Hello All, The Onc told me the Interleukin did not work (although I am inclined to disagree), so we are moving on to Votrient. The last MRI before the IL-2 was done in February 2012, and the two rounds of IL-2 were done in June, and July. The MRI/PET scan performed after the IL-2 treatment showed slight increase, but I…
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Wow,What a Week but Things are good!!
My internet has been up and down so I haven't been able to get online..arrgghh...Had my partial nephrectomy on my right kidney last Friday..Surgery went well...Amazingly I started producing "perfectly beautiful" Urine immediately...I did so well that I was released on Saturday afternoon..can you believe it!! Of course I am…
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Husband about to start cycle 2 of IL-2 - Seeking caregiver support group
Hello everyone! I have been reading the boards and thrilled to find this resource. My husband was diagnosed with RCC 7 years ago. Had a nephrectomy at Hopkins and for 5 years, all clear. On the 5 year check in, they found a spot on his lung. Summer 2012, he had a wedge resection by Dr. Yang and again all clear ... until…
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Faced with surgery...and a bunch of questions
The first week of January, I had blood in my urine. I went to a local urologist hoping that it was just kidney stones...but since I'm here...well you know what they found. 7.5cm x 7.5cm mass in my left kidney on the lower side. The urologist wanted to do a non robotic laproscopic full nephrectomy the following week. When…
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Possible surgery - Very scared, worried, questions about others experience
Hi all - So glad I found this site. Doing lots of research on my situation. First I would like to say good luck to all out there. Apparently I am not alone, someone out there has had to have been through some of the things I am going through now. On 1/1/13 I went to the ER with a sudden onset acute intenstinal illness.…
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New Drug ==> CMet (?) for Papillary RCC
Good news kids! I had my second scan since I began Votrient in August 2012 and the lung mets and lymph node are stable. My November scans showed shrinkage and stability, this February scan showed stability. I will post the details in a thread from one of our previous discussions. Okay, all of that is good and fine, but my…
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New here, RCC, Surgery scheduled 3.6.13
Hello, My name is Brandy and I am new to the boards here. I was diagnosed on February 7th and have a tumor removal and partial nephrectomy scheduled for 3.6.13. I have come here for support and just to gain more understanding of RCC and its symptoms, treatment and recovery stories. Luckily they caught my tumor by accident…
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Six Month Scan - Next Week
Its been awhile since I have been on this board. I hope everyone is doing well. Holly had her surgery (radical neph, stage 1, 3.5cm) in August and has recovered 100% and is stronger than ever. Next week is her first scan so we are saying our prayers. You guys are always on our mind! Tom and Holly
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My Husband was diagnosed with Stage 4 Kidney Cancer
Hi all I have been reading this sight sporadically for a few months.. and it has been very helpful.. My Husband (Chuck) was diagnosed with Kidney Cancer July 2012.. he had his right Kidney removed shortly after.. the Biopsy showed Clear Cell mixed with something else..at that point the belief was they had gotten it all..…
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Adrenal nodule and CT without contrast...
Hi all and thanks in advance for any insight you can provide, I am twelve years post RCC and right radical nephrectomy. My doctor stopped ordering contrast for my annual follow-ups some years ago but in the meantime a 2.0 cm growth appeared on my left adrenal gland. This didn't really worry me until I read some recent…
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Feeling Anxious tonight as the Surgery date gets closer
Really glad I found this site..starting to look forward to checking in. I wish they had more info to input like at least the state or country we are from etc. I am feeling a little out of sorts tonight. The past two years have been really hard on me..On Jan 5, 2011 my brother Sam, 56, died of sudden cardiac arrest. Then…
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Wow,What a Week but Things are good!!
My internet has been up and down so I haven't been able to get online..arrgghh...Had my partial nephrectomy on my right kidney last Friday..Surgery went well...Amazingly I started producing "perfectly beautiful" Urine immediately...I did so well that I was released on Saturday afternoon..can you believe it!! Of course I am…
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Kidney Cancer Chronicles - Chris Battle
http://kidneycancerchronicles.com/cachexia/ Not sure how many--if any--follow Chris and Dena Battle in Kidney Cancer Chronicles, but their diary type articles on the various treatments Chris has undergone are a must read for me and John. The link above is his most recent post on cachexia, the wasting of body and muscle…
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New to Group
Just found this site and list. I was diagnosed with RCC on 12/24/2012 though I felt I knew what all the tests were for a couple week before that. I had NO symptoms except for being cronicly dead tired. My pulmonologist asked for a chest XRay along with other work on my sleep apnea when they spotted a something on my left…
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Solitary Lung Met
First a quick recap: May 1 2012, mass found on kidney via CT Scan. June 19, 2012 Radical Nephrectomay; tumer rated T1B, Furman grade 4 (15% Saratomoid diiferentiation). Dec 19, 2012 While at NIH for Familial RCC study, 1.5 cm mass on my lung ID's. Pet Scan and biopsy showed it to be cancerous. Feb 5, 2012 Lung Mass…
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One last thing...
This will be as good for some of you as it is for me to express. Take what you want, disgard what you don't want. It's my take on what is happening to those of us that are bonded by a common experience. You are going through a lot of emotions. Let it out. It's ok to cry. I thought I was the most manly 45 year old guy I've…
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and so it returns...
Seen the doc friday. It has returned to my liver. Scheduling lobectomy. :( wzith possible liver pump.t
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Hospice in or life
Mom has been having this horrible pain (grade 10) since 1/29/13 on her right lower back. On Friday 2/1/13 we took her to the ER. Morphine no longer cntrolled the pain. She was admitted for a really bad kidney infection. X-rays were done. Others tests were done , conclusion, Cancer spreading. Thursday 2/7/13 we were told by…
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The waiting is the hardest part
Finally went to see anaethetist on 13/09/2012, thought that the operation would be imminent, only to be told that I was on the wait list for NOVEMBER. I can live with the fact that I have RCC (I think) but the wait for the operation is the hardest part. Quite frankly I am terrified of the whole procedure. It is only the…
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Funny Bonz II...
There was a newly wed couple who were getting their first look at each other's attributes on their first night together. (Science fiction, I know) Any way, she undressed quickly and jumped into bed, he was somewhat embarresed and moved quite slowly. First he removed his shoes and socks revealing toes that were twisted and…
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Quick Update - Progress Continues
Hi, all. Again, sorry for my absence. Quick recap: 43yo male, father of 2, diagnosed stage 4 grade 4 rcc back in April 2012. Removed left kidney, adrenal, and some more parts and slices in May 2012. Started Sutent June 2012 or so and have been using Gerald White's MAARS program since then. Had good results. On to the…
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I'm back, but I have to clear up a few other health issues
Those of you familiar with my story know that following surgery my wife scheduled a Southern Caribbean Survivor Cruise. I just came back from number 11. Anyway the last 4 dats I have been pertty sick with upper resperatory ailments. Possibly pnemonea but the fever is either low or not there. Ships Dr. gave me some…
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My Husband has stage 4 M RCC, about to start Sutent
My husband has not been on this site yet, I have searched for information and came across your support group which has been the first positive place I have found we are just new on this journey and as yet have sitill to complete his right kidney surgery. most of the medical terms I am not familiar with but will in time I…