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Changed Start date...Now Monday
We spent yesterday getting Chucks testing done for the trial..based on the information gathered and on prior patient response we now start the trial Monday April 15...when his oncologist gets back...we are not sure of the dosing yet because its randomized. . But we will know prior to starting.Chucks scans showed no new…
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Newbie
I have just joined this forum today. There does not appear to be anything here in Australia that offers similar experiences. My story started in May 2011 when I had an ultrasound for occasional pain in my right side. This was immediately up with a CT scan which revealed a 20cm mass on my right kidney. Radical nephrectomy…
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Of course!
I had my MRI yesterday and they released the images on disc to me – BIG mistake lol Of course as soon as I got home I popped that disk in and deployed my super awesome secret ninja skills and took a look at all my nifty insides and of course I have no idea what I am looking at lol So of course I started Google’ing’ kidney…
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CAT tap?
hi all, has anyone ever had a cat tap done as a follow up? i thought they said cat scan but i saw my gp on friday and he said no it was a cat tap??!! also did anyone suffer with a dodgey back after surgery? eims x
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Update
Hi all I went to the doctors yesterday, my blood work was normal and all my urine test came back normal except that I have 50 occult blood in my Urine. The doctor says that he isn't to concerned. I am still worried!!!! I am suppose to go see a urologist but that appointment is probably gonna be a ways down the road.. The…
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Encouragement
My story is getting old. But there are always so many new people. NOW STOP IT AND GO AWAY! NO MORE KIDNEY CANCER!!!!!!!! Sorry, I exhaled and it came out loud. What I want to say is hang tough. Force yourself to fight. Too many give up. That bugs me to no end. Unfortunately some fight and lose. I cry about that. Way to sad…
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Not kidney, but cancer got one more family member this morning
My husband called about 7:30 this morning to let me know that Joe, our "other" in law, died this morning of metastatic melanoma. Joe was our daughter-in-law's uncle; and over the past several years we have become good friends of he and his wife. (and here's where the small world thing happens- Joe and Dave played football…
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NED
Got results today from my recent CT Scan of the Pelvis, Abdomen, and Chest = NED :) The anxiety of this process every 4 months is horrible. Driving to the Dr., waiting to see the doctor, is the worst feeling. They found, what the radiologist said looks like a "Goiterous Left Lobe" of the Thyroid Gland - My ONC Dr ordered…
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He fought the good fight!!!
Quite a few of you know my husband's cancer history. Well he fought the good fight that ended about 10:12 last night. Please keep our family in your thoughts in the coming days and weeks.
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A new thread, a new chance, and I hope a new quality of life. Goodbye MPDL3280A. I sure wont miss
We are never ever ever EVER getting back together!! When I think about the quality of my life over the past 2-3 weeks, I understand giving up. In fact if MDPL hadn't broken up with me. I would have broken up with it! I was reduced to a sleeping princess (escaping the twisted reality that had become MY reality) and a…
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Happy Easter
Just wanted to wish everyone a nice easter weekend....hope you all have a lovely time. Eims x
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MY EXPERIENCE WITH VOTRIENT...SIDE EFFECTS ECT.
hi all... just wanted to share my husbands experience with Votrient so far hes been takeing it for about 2 months now...his hair turned gray, the roots that is...his beard was gray, untill he shaved when it turned back to its normal color and the third time he shaved it was back to gray...and he is haveing itchy and…
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Wait and see
Well, I finally got a call back from the doctor with the results of the MRI. The results came back indicating that it is cancer and not just a cyst. His suggestion due to my age (41) and the fact that the cancer is small and can be easily removed is to get it taken out. So I will be going in for a robotic partial…
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I am terrified!!!
Hi, I know I probably shouldn't be on here because I haven't been diagnosed with cancer yet!! This nightmare all started 2 weeks ago as I am so so so scared!!! I thought I had a uti and was put on 3 different types of antibiotics.. Te symptoms are gone now but there is still microscopic blood and a trace amount of protein…
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E-Patient Dave - good read
Robin Martinez, royalty/moderator at the Kidney-Onc (ACOR) site, posted the below link published by the British Medical Journal. I recall e-patient Dave being one of the internet bright spots when John was first diagnosed, and I thought it might be worthwhile to post here for those who are unfamiliar with e-patient Dave.…
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Newbie Intro
Hi All..! I figured that since I was already posting here.. I would introduce myself and share a few things about me and my RCC tale.. First, I am a male, 59, well.. in a few days I will get to turn 60.. Born in Detroit, Mi and been living in Cal since 1975. Not much of a medical history of sorts until now... Like some /…
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Update
Not really sure of the protocol – if this should be a new thread or if I should have continued with my other post – if the later, sorry! Results of today’s Dr. appt. : 1) The “mass” is almost as big as (looked bigger to me but Hey ( Duck Dynasty ref.) )my kidney 2) MRI scheduled for next week (Wed.) to determine…
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Kidney Cancer Association Annual Patient Meeting Update and link for Youtube for those who could not
Have been watching this and its actually really interesting.. esp for those of you who have been newly diagnosed or have a family member who has been.. They are on break right now.. www.kidneycancer.org has a link to it..it's live streaming so not sure if you will be able to see it later on YouTube its worth a look…
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Why didn't they tell me?
I guess I’m just scared and looking for some advice. A little background: 3 yrs ago my urologist ( I have intercystial cystitis) found a small 2~3 cm mass in the upper pole of my left kidney. At first the CT indicated that it was indeterminate so he had me go in for another CT 3 months later. At that time he said he was…
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first scan results good
Well Nick had his first post-Sutent scan 2 weeks ago and we got the results on Thursday. The bone lesions showed no signs of growth and were as the consultant said 'stable'. He has lesions on his right pelvis and left collarbone. Don't know how large they are. The consultant told us that these would not shrink ever, but…
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THE ALLTRIALS PETITION
Just returned from an appointment with my oncologist and found this email from Ben Goldacre and Tracey Brown waiting for me. I hope folks here will take this as seriously as I, for one, feel it warrants. Dear Friend You, and 40,000 other people around the world, have signed the AllTrials petition. We are on the threshold…
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ccRcc diagnosed 08/03/2012
Hello. I have been reading the posts here for a few weeks as I try to get a handle on this whole Renal Cell Carcinoma thing. I was diagnosed August 3rd with a large mass on my left Kidney 10cm, and ever since then it's been a confusing ride of tests, guesses, and assumptions. I have been trying to learn everything I can…
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National Patient and Survivor Conference, April 6 Live Webcast
I just received this in an email from the KCA. --David From the Kidney Cancer Association Events Calendar: Join us for a live webcast from the National Patient and Survivor Conference, April 6, from M. D. Anderson Cancer Center, in Houston, Texas. Here's a link to more info:…
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Just out of Hospital from having partial Nephrectomy done
I feel ok, feels great to know that tumor has been removed from me, Tired, but forcing myself to walk around,
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nutrition supplements
Hi all, Can anyone recommend me some nutrition supplements for kidney cancer patients? I am flying back to my country and would like to buy some for my father before I leave. Thanks a lot!!!!!!!!!!! Currently I've bought the following: Ensure Nutrition Drink Powder, Vanilla Flavor, 14 oz Can (397 g) Amazing Grass Organic…
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Just Diagnosed
I was just diagnosed with a mass on my left kidney and was told there is an 80% chance it is cancer. Have been referred to a specialist on April 2nd for consultation. I am a very large woman and my urologist said this would make things harder to handle. Anyone out there in the same situation. I am terrified.
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CT with Contrast. Info Needed.
My urologist had told me that the time would come when I would need a CT scan with contrast but I wasn’t expecting that time for another six months. My GP is suggesting a CT scan with contrast for an issue not necessarily related to my kidney cancer. He has advised me of the risks to my remaining kidney, risks I was…
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Just Starting the Fight - updated
I want to thank everyone for their support and update you on what is going on and some strange additions: -Brain scan and Bone scan taken on April 1st both came out normal Here is the summary of opinion #1 (my main doc) -7cm mass on left kidney, mass on side (about a small golf ball), related lung nodule -surgery to remove…
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Trial over and feeling great
Hi All, So I just finished up the Everolimus trial, took my last pills on 3/20. I had a scan on Monday and oncologist appointment today. NED!! Feeling really good right now. I am not sure if I was getting the placebo or not but I definitely feel like I have more energy now. The Doc told me he has patients on Affinitor that…
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Chuck's a go for the week of April 22
The Doctors office just called... Chuck is starting the trial(IPI and Anti PD 1) the week of April 22.. we go for an EKG,ECHO, Scans and Labs next week... the schedular is going to call with the exact day...for the testing.. waiting stinks ... I am the most impatient person in the world...and I have to say the Scans part…