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Three-time renal cell carcinoma survivor
This is my first time sharing my personal account with kidney cancer on this board. I decided to do so in effort to offer some hope for anyone who needs it. I am a three-time renal cell carcinoma survivor--the last two of which were stage 4 (metastatic and distant spread). My first diagnosis was at the age of 25 following…
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When is the most common timeframe to have the first post-surgery scan???
My open radical was on Oct. 2, which got rid of my 4cm cubed tumor (named Edward) -- stage 1B, grade 3. My first post-surgery urology and oncology appointments are coming up in January. I just got the reminder in the mail -- and, apparently, I do NOT have a scan scheduled. That really surprised me -- I fully expected to…
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SORCE TRIAL PARTICIPANT WISHING TO SHARE EXPERIENCES
Hi all, I am currently on the SORCE trial at Addenbrookes in Cambridge. I was diagnosed with kidney cancer on 5th August 2012 as a 46 year old man and had the affected kidney removed approx 3 weeks later. It was checked and found to be stage 1 and grade 4. Due to the aggressive nature of it I was offered a place on the…
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Scam
did anyone else get a scam message from a creep claiming he/she has less than 2 weeks to live and, what else??? that, of course, he/she needs help in accessing funds that he/she will donate to cancer research. the message was sent by someone purporting to be a CSN member and obviously accessed my CSN space. Sarah
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Afinitor anybody?
Great doctor @ MD Anderson, Dr. Tinnir, has me now on Afinitor, 10 mg daily, for trial. I spent 3 days @ MDA doing every scan/test under the sun. He says he can not "cure" me but I signed up for a trial with Afinitor being the first of 3 drugs he will use. Return every 8 weeks for check-ups. Anyone ever used this baby?…
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Post surgery - lost/confused
I learned about my renal cell kidney cancer on Monday, November 25, 2013. I had experienced symptoms (anemia, fatigue, fever, chills, night sweats, 30lb weight loss, loss of color to skin) over the past year and a half. After several months of blood tests with no change in iron or hemoglobin, my internist referred me to a…
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Overwhelmed
This is my first post and I'm not sure where to start. I hurt my back at work 6 months ago and on MRI they found what they thought was a kidney cyst. Doctor said to recheck in 6 months. I did, sono showed it has grown and suggested a CT. I had CT done which suggested to see a Urologist and that it was solid, possibly renal…
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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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two weeks and 3 phone calls later...
Two weeks and 3 phones calls later, and still no results on my chest x-rays. These were my first set of tests since rad neph, 7 months ago. In the beginning, I was anxious. Now, I'm just pissed. The common curtesty of returning a simple phone call in a timely manner is lost in the majority of the medical profession, in my…
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1yr anniversary. And another checkup!
I took my blood test and chest x-ray today, but then they called me back later and said I need to come in tomorrow for a kidney ultrasound? Is this normal for a 1 year post op checkup? I go to see the doc on Friday. I have been training alot for the past few months, getting ready for my attempt at an Ironman in May 2014.…
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JUNO IMMUNE THERAPY CURING CANCER! MUST READ! THIS IS OUR FUTURE!
http://junotherapeutics.com/ This is another encouraging link. Hold on everyone, it won't be long now! It can't be!!
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Cure for cancer? I think Scientists are getting there! Look at this!
http://www.cnn.com/2013/12/07/health/cohen-cancer-study/ This is very encouraging! They seem to be on the right track! I believe the cure will come! Soon!
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Scar Question
Hi there, I'm currently looking after my Mum who had a radical nephrectomy 3 weeks ago. She had a 9cm tumour. Because she's never been poorly before, she's worrying about lots of things. She thinks she should be doing a lot better than she is, even though we're telling her to listen to her body and take small steps. Today,…
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MD Anderson here I come..help/advice needed!
May 13: partial done, robot, stage 1 but grade 4 due to small sarcomatoid feature. "We got it all.." Sept 18: "clear" CT scan Nov. 20: new read of CT: "need to do PET/MRI." Results: 10 hot spots at original surgery site, 1.5 inch tumor on dome of liver. waiting on appt. to MD Anderson in Houston as medical team here says…
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Washington Post Opinion Piece: Author decribing how RCC taught him about mortatlity
Here is an article that may be of interest. Ice, please do not read his other peices, they will get you riled up. I am not endorsing his opinions, just this one article.…
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latest scan
Well here we go. I had my follow up scan yesterday. The IL-2 is doing it's job! My tumors are stable or shrinking. What else can I ask for? Next scan is in 6 weeks. There was a time a couple years back when scans showed tumors everywhere. Now only down to a couple soft tissue mets and a couple bone mets. And they are…
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Collecting Duct Carcinoma
Aka we're back. We saw blkjak's new oncologist on Monday. Our shot at testicular cancer is over. He believes that this is kidney cancer, as previously thought, and thinks it is collecting duct. He is being treated with chemo weekly, carboplatin and paclitaxil , as this is the one subtype of kidney cancer that can respond…
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How do you sleep post surgery?
Just wondering how you sleep post surgery. Was thinking of getting a recliner, then it occured to me that pushing back and trying to get UP would be too difficult. I know some of you mention propping self up in bed. Any other ideas that worked for you? Thanks, Jan
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Help...kind of freaking out
Hi! Sorry I have bern away for awhile. Had a partial nephrectomy on sep 3rd. My tumour was about 3.5 cm grade 2 clear cell rcc. Right after the surgery I had a chest CT which showed 2 nodules...2mm in one lung and 3mm in the other. Went yesterday for my 3 month follow up scans...pelvic abdominal and chest ct with and…
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First post surgery scan next week.
Hello all. Hope all is well. I haven't been on here in a while, mostly due to a work schedule that was not favorable to spending a lot of time on the computer. It seems all I accomplished was going to work and then "passing out" in the recliner once i kicked my shoes off. Sometimes didn't have to remove the shoes. Anyhow,…
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Avastin plus interferon for xp11.2 translocational RCC (9-year-old son)
I posted at SP, but want to ask here and see if anyone has experience with Avastin plus interferon. Profile: 9-year-old boy dx in March, 2013, xp11.2 translocation RCC. Left kidney removed with 20 more tumors in lymph nodes nearby. There are 5 clusters of tumors in neck, chest, abdoman, all in lymph nodes. Started Sutent…
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Tomorrow Arnold will be leaving me!
Hello Friends! After a long wait, I am finally heading to the hospital tomorrow to evict Arnold from this body of mine. I have told my sons that I look at it as an "all-inclusive" get away! Three nights-all expenses paid stay...all the ice-water I want to drink and jello to eat! Just wish there were palm trees...I LOVE…
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Motovational Video
Hi All..!! OK, this is NOT Cancer related, but it is motovational..!! And for the biker folks here.. I am sure you can relate.. And for the non-bikers, I hope this gets to you as well... Oh yes, his "English" is a tad hard to understand... heh http://www.youtube.com/watch?v=TNKuesBVmYs Ron