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Long term remission only for those who undergone IL-2
As a new member here I notice that only those people like Foxhd and Ron who are lucky to have undergone Il-2 are the ones who had a long term remission? How about people who only relies on Sutent? Does anybody have long term remission on Sutent alone? and for how long it has been? I've been on Sutent for 11 months now.…
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Stupid questions, but ...
In 2 weeks I have an appointment with an oncologist. The appointment was made back in June after my first visit to this oncologist. That initial visit lasted for maybe 30 seconds at the most. He simply asked me if I was receiving follow up care and when I told him I was by my urologist he simply set up this appointment for…
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Jumping into the blender
With the whirl of the 2 posts that Fox started-his update, and his statement/plea to keep on posting- it almost has seemed off subject to share what I consider good news. First: I went through a tremendous and very black time earlier this summer after the death of my mother-in-law. It wasn't just wearing myself out…
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Nivolumab Sutent scan update
When I posted my "funny one" I was originally logging in to share scan results. My Nov. 13 scan showed no evidence of disease. See my profile for setails, but I started with an adrenal tumor, and lung mets in Feb 2013. I do know that BMS is not continuing the sutent - Nivo arm for severe side effects seen in a high…
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Sutent
Well, no longer part of the Clinical Trial and will be starting Sutent on 11/4 and looking for feedback on what to expect/side effects. Also curious how long after I start taking the pills (50mg) that I should expect to see on the onset of these side effects--if any. DB
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Funny One
I am guilty of what Fox pointed out. I joined in June 2013 post surgery and post starting on Nivolumab Sutent trial. I check the site about once a week and rarely post. Here is hopefully a story that is an example of some odd sharing that brings a little humor to the site. Being on a trial, I saw my doctors every week for…
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New to Forum, Unfortunately 1.5 years into my "New Normal"
Hi Forum! I am new to this forum as a member, but have used this site as a wealth of information and support in the course of my journey over the past year and a half. I know that everyone has a different story and is in a different place, but I finally have made that step (thanks Fox) to be a contributor as I have learned…
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Sutent Update
Ok, 10-days down. On 50mg take late afternoon. Some issues with mouth/tongue but minor. Some issues with "movements" but they are minor and considering I had constipation for 7+ months on the clinical trial I am OK with how things are going now. Joint pain from the clinical trial is going away. Still have fatigue but…
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If Fox can tell a story, so can I...
My story begins in 2003. My father was diagnosed with bi-lateral kidney cancer. Since my grandfather had died of kidney cancer, my father (who is a physician) suggested that I get screened. I mentioned it to my Doctor, but he told me kidney cancer is an environmental disease, and thought it was not nessisary. This repeased…
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Off to Aruba
I am going to take a 10 day vacation from this board as I fly to Aruba on the 12th. I am going to take the 18 year old girl I met on the beach for her 70th birthday. Anybody have any suggestions for Aruba. Meeting one 18 year old girl on the beach is enough for me. Icemantoo
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Checking in
Hope every1 is doing fine. My scans have been fine and have been concentrating on family and work. Wont ever forget the help all of you gave me when times were tough. Happy Turkey day and Merry Christmas to ya all.
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IL 2
My husband and I are meeting with the doctor on Thursday to see if he is a can move forward with IL 2. He was cancer free for almost 4 years when he went into the ER for back pain. The kidney cancer had moved to his spine, rib and lung. They removed as much in the spine as they could and stablized the area. We are now…
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Questions about my first three month CT
Hi everyone I go for my first three month CT 10 days later; I'm very anxious and fearful for the result. I had random little pain in my chest so a Chest Xray was ordered last week. No mets in lung and chest bone were seen so I know there aren't big ones, have no idea about very small ones which can only be caught by CT!!!!…
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Checking back in
Hi all, I am checking back in.. its been a rough summer... In April, Chuck took me on a surprise trip to Pa for my Birthday my Mom had been having health issues.. and I was concerned... The trip went great and she looked good.. however she had a large lump in her neck...Two weeks after the trip she was having exteme vision…
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Urinary tract infections
Background: Right total nephrectomy 9/2013, clear cell, stage II (tumor size 7.5 cm), clear margins on path. CT scan of chest, abdomen & pelvis 3/2014 NED. CT scan of abdomen and chest x-ray 9/2014 NED. This afternoon I saw my primary care doctor. I told her that, just today, I felt the start of some pressure in my bladder…
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advanced kidney cancer
Hello I am new to all this, I had an open nephrectomy in May to remove a 9.8cm tumour and my right kidney, I was then found to have (was told 2 lung mets) on right lung, after ct scan and seeing oncologist in September I was told that I have multiple metastasis in both lungs, have been started on pazopanib (votrient). I…
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looking for dr.
Hello I'm looking for a urologist in Ann Arbor ... would prefer a woman. I had a partial nephrectomy in 2008 at Cleveland Clinic. My GP has been ordering my follow-up scans for past several years, but I would be more comfortable with a urologist (really long story about experiences in hometown). Any recommendations?"
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Lower back pain on the right side....
So, I had a radical nephrectomy back in October. I have been experiencing lower back pain on the same side where my kidney was removed. My question is, could it be something to be worried about, or could it be just the change in weather! I know aches and pains are associated with the colder weather and i just wanted to…
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GS Ron's YouTube Video
Those of us who knew and loved Ron can now SEE him up and close. Miss you so much Ron~ Jan http://www.youtube.com/watch?v=4cZGTtyA5OQ
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In Need of Support-Daughter of Cancer patient
Hello, everyone! I am in desperate need of some words of encouragement or a friend to chat to on-line. I found out my father had renal cancer two years ago and had his kidney removed then. However, over the course of the two years his cancer has spread to his lungs and brain. He has tried several medications and radiation,…
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Diagnosed stage 4 just one week ago; very scared and alone.
Came out of the blue. Urinated blood for the first time ever in my life and a long story short; I have a 9cm tumor in my right kidney and 9 metetastic lymph nodes to keep it company. I've started going to Dr Jonathon Harper and Dr Scott Tykodi at the Seattle Cancer Care Alliance, but no treatment plan has started. Harper…
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blood in urine
I was diagnosed on December 1, 2011 with RCC. I had my kidney removed on December 14th. Today I had my yearly visit with my OBGYN and explained that I was feeling pressure around my bladder and lower area. I have a really bad back so that always hurts. Anyway, she did a urine test and there was no infection however, there…
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Waiting on Pathology has been the hardest part!!!
Hey, guys! I had a nephrectomy on Oct 21 2014. Originally it was scheduled to be partial but I had some arterial issues that forced the surgeon to remove the whole left kidney. The march to the surgery was one thing, but now I find myself OBSESSED with waiting for the pathology... the tumor was small (3.9cm) and confined…
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Checking in
Hi everyone. I haven't been back in about six months, since my husband passed away. I intended to stick around and pay the support you all showed me forward, but ended up feeling too overwhelmed to come back. I think about all of you often and was happy to see posts by some of you I remember. And I think I'm ready now to…
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complex renal cyst 11cm in the left kidney
Hi there, I have just know that I have complex renal cyst after doing CT scan. Suffered from low back pain which was vey severe few days ago,fever and slight haematuria, been admitted to the hospital where I did the CT. There is no metastases ,only few local lymph nodes. I am 60 years old. I have very little information…
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chromophobe
Has anyone ever heard of scar tissue in a kidney after a partial? He lost 20%of his kidney to renal cell chromophobe two years ago. Last scan was in May at Cleveland Clinic. All was well. He had pain a few weeks ago and his primary dr.sent him for a ultrasound. He got a call that something was there maybe scar tissue. He…
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It has been one year. UPDATE: One year, all clear!!!
On the one year anniversary of my husband's diagnosis with kidney cancer, he will be attending the service for his childhood friend that passed away after a lengthy battle with cancer. It is all so bittersweet. I am so grateful for the gift of getting to keep my husband, but the scanxiety and fear of the unknown is the…
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Stomach flu and only one kidney
Hi everyone, Has anyone had to deal with this? I'm worried about the hubs, he's come down with a nasty stomach flu courtesy of our 8 year old. It's puke central around here, and I'm doing my best to keep them both healthy but now I'm worried about the one kidney issue. If anyone has any tips while I wait for the doc to…
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Wilms tumor
Hello everyone I want to share my story, even though it just begun. I am 18 years young, I was healphy and fine until this autumn. I had very big pain in my back and after few days I got high fever and sudden lost of body mass. Soon after that I went to family doctor he said it probably just muscle inflammation. I drunk…
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3 time loser
That's what I'm calling myself. But more appropriately, it's more like Cancer Version 3.2. On Monday this week, I was diagnosed with breast cancer, with spread to axilla nodes. That makes 3 cancers, and 1 additional borderline form in 2 years. I'm in shock. But not surprised. I don't know what the treatment plan will be…