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What’s Coming Down the Pike
There are many new treatments for RCC currently in Clinical Trials around the world. Below is my compilation of what I believe are the most promising treatments that are on the horizon for RCC. Hopefully, these new drugs/treatments will receive FDA approval within the next 1-3 years. Each drug I mention contains snippets…
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Pathology Report
Ok I have finally gotten up the nerve to read my pathology report. I know that the dr gave me the results after my surgery but I swear I was still so out of it that I could not remember anything that he said. It has been on my mide for a while so I finally went and asked for the report. Can you all please tell me what pT3,…
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Cancer Treatment Center of America--Kidney Cancer Treatment
Has anyone had their kidney cancer treated at CTCA in Illinios? I am considering a second opinion from them...the first opinion was through UPMC in Pittsburgh. How is CTCA in terms of kidney cancer treatment? Those that have been there..are you pleased, displeased, etc? I don't mind making the trip if there is truly a…
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Metastasis(RCC) to axillary lymph nodes
Has anyone heard of distant metastasis to Axillary lymph nodes(under armpit) from RCC. From what I've read it's extremely rare.
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Bone,lung,brain mets. Signs & symthoms
Hi everyone What are the signs and symthom of bone/lung/brain mets? How long does it take that the patient can feel it? And how can those pains be described?
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Sad news
I just read on another forum that GS Ron passed away on November 6 from kidney cancer complications. i am shocked and saddened with this news; I had been missing his posts but thou he wanted a cancer break after learning of his cousin's impending death. Ron was so positive and supportive and I thought getting better. if…
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Mystery Stomach Issues?
Hey, I have a random, Sherlock Holmes type investigative question. as I've read a lot of survivors' stories on this forum, I've seen a great deal of members whose cancer was discovered incidentally after stomach problems. I count myself as one of these stories. I had a terrible stomach pain that lasted through the night…
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Speed of tumor growth?
Hi all. I had a clean scan August 18th (no contrast though). I was Stage 3 ccRCC (grade 3) and had my nephrectomy 2 years ago this month. I've been having pain that is pretty non-specific, but it feels like it could be in my ribs on the right side (same side as my surgery) and just above my incision. It's away from the…
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Risks while waiting
first of all, thank you to all who responded to my previous threads. I don't know how I would be handling this without this community. to recap, I have a 4.5cm mass on my right kidney and have an appt to have the chest CT on Tuesday...praying it hasn't spread....praying very very hard! Anyway, my meeting with the surge on…
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AGS-003 personalized immunotherapy
Has anyone ever heard of AGS-003( a piece of your own tumour is used and RNA extracted)personalized immunotherapy or been involved with a clinical trial using this. Has there been good success with this? My father will be starting this trial in the next few months.
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Wishing all a very very happy Thanksgiving!
May you eat too much, relax too long, watch too much football/tv, enjoy you family too much...In other words: Enjoy too much life and love! I am truly thankful for all of you and your support these past few months. Hugs and extra piece of pie from Ann Arbor. Laurie Oh and PLEASE drive carefully! Tonight is THE BIGGEST bar…
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The Need for Constant Vigilance...
Hi, all. I've spent only a few weeks here on this forum. But I must be open and honest about a couple things that have struck me early here. After my pathology report came in, my doctor was very positive and a little dismissive of the future possibilities of RCC coming back into my life. (I've talked about the path report,…
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Nervous
Was reading so much positive stuff that I should of stopped while I was ahead. I was hoping and reading about great recoveries but now I'm reading not to believe what Dr say about it being clear and infections. Now I don't want the surgery
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Being NED feels great
I'm here to happily report my first abdomen/pelvis/chest CT with/without contrast three months post surgery which is now on the desk and I can't stop looking at it with a big smile. Friday is my birthday and this is the best birthday gift I've ever received. My loving husband and I are planning for a short trip to…
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Creatinine levels
is there a relationship between advanced kidney cancer and creatinine levels? I realize creatinine levels typically measure kidney function
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recurrence question
Hello everyone firstly have a lovely thanksgiving to all friends. I found out from my gp that my 3 months scan results show that my lung mets are shrinking and that there is recurrence in the right kidney bed (9.8 cm tumour &kidney removed 22may 2014) I have been on pazopanib since 6 September, so this was my first scan…
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member participation
Just a vent. I've been here 3 years now. I came here like most of us do. I had questions. Needed answers. Once I got them I didn't abandon this site. I shared my experience and progress with those that helped me out. And those newer than me who I was able to help. My testing, biopsies, surgery, information on clinical…
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Question
Hi all. I have a call into my doctor and am waiting to hear back, but I had a question wondering if anyone had a similar experience. I am roughly 7 weeks post a robotic radical nephrectomy. I do not know if the adrenal gland was taken out too. There was no menion of it on the pathology report and honestly, I never asked my…
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Slow healing
Hi all! I had surgery 9/25/14 to remove my right kidney due to cancer. All cancer was contained in the kidney and I am now cancer free! YAY! I still have a tiny hole in my incision that keeps leaking. Im having a CT today to see if we can figure out why. Has anyone else had this problem? Thank you!
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increased blood urea nitrogen (BUN) in recent blood test
In my recent blood test (three months post surgery) BUN is 25 (6 to 20 is considered normal) and creatinine is 1 ( 0.6 to 1.1 is considered normal). I took this test in the morning after almost 12 hours of fasting, I had also drank just one glass of water since the night before. six months ago(three months before the…
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Happy to be NED!
November 13, 2014 was one year since my brain surgery. I received the results of my CT Scan and my MRI today and I am NED!! I have been battling since August of 2011, have been in ICU twice, have had right kidney removed, bottom portion of right lung removed, and a tumor from my brain removed. It does not really matter…
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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…