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Official Results
I thought I would update everyone on the official results of my CT scan, post what my primary care physician told me. My ONC confirmed what my primary said (I did not tell him I knew) The mets are growing again, and quickly. There are several forming up on my lungs with one that is already grown 3 cm in three months, my…
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One kidney doing what it is supposed to do
I have been here in Florida 3 months so far. Now being followed by a new Nephrologist who I just saw for a follow up visit.. My GFR is up a couple of points (good) to 49 and my Creatine down to 1.5 (also good).. Not too bad for a 72 year young guy with only 1 kidney left. Following the Neph's advice on blood pressure,…
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Happy Holidays
Hey, all, Sorry I missed Christmas! Hope you all had a great holiday. Been busy here with the Jake-aggeddon. As you can see in this picture, Jake is going through treatment for bilateral clubfoot. He has casts on both legs and they get changed weekly to turn the feet back into the normal shape. I'm sure at least a couple…
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Its Been a while.....checking in with an update
Hi guys, I haven't posted for a number of months mainly because I find it hard to talk about it on a regular basis. But I have 3 mets in my R lung one in the Hilar lymph node and a 3.25 cm one on my small bowel. I am in the 214 checkmate trial Nivo/Ipili vs Sutent and I received the sutent arm and have had 3 cycles so far.…
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Mamma and the meaning of life
It's holiday season and some might have free time to read, so why not this book by Irvin D.Yalom? It's a book consist of 6 short tales of psychotherapy, fist four ones are based on real people's stories The second story is named meeting with Paula, a metastasized breast cancer patient who has found her own version of…
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Nivolumab/OPDIVO
My doctor is recommending that I switch from 800mg Votrient to nivolumab/OPDIVO. Any thoughts? Thanks.
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Weird Day
My wife and I schedulted my results day a week after my scan on purpose to be after Christmas, since last year we found out that my cancer had returned on Christmas eve. I was watching football with my sons when my primary physician called she wanted to make sure I was okay and I said I felt fine and she said she recieved…
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Differential Stress Resistance- Reduced chemo SE & weight gain
So I've been reading up on Differential Stress Resistance for the upcoming meds. In a nutshell, and I can expand and linky-dink if anyone wants, it's basically fasting for 48 hours prior to chemo. Normal cells will 'turn off' in the presence of no energy (no food) but cancer cells don't. So you're kind of putting your…
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Happy NED year
May we each have a Happy NED Year. Icemantoo
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This process makes no sense to me. Any info?
July, hubby had what we thought was a UTI. He took antibiotics and it 'cleared up'. I'm air-quoting, because it obviously could not have just cleared up, but it seemed to. Four months later, another one that would not stop after three rounds of antibiotics, so his GP sent him for a CT. CT scan showed 10cm mass on right…
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4 year anniversary NED
Hi all quite sometime didn't login to forum,!today is 4 year anniversary NED! Wishing all merry Christmas and happy new year! Keep on fighting cancer!
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A curates egg
Got my scan results yesterday, and like the curates egg they were good in parts. Most of my mets are stable,but one enthusiast sod has increased by a third and is now 4cm, or the size of a thumb. I also need a hip replacement. The fact that thy want to replace my hip seems to indicate some faith in my longevity. Otherwise…
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Ever get a song in your head?
and you can't get it out? This weekend I had another experience that we have all had. Some good intentioned person was asking me how I'm doing. During our conversation they uttered that incredibly stupid statement, "We all could die any minute. We could get hit by a bus today. Or maybe have a heart attack and die. We are…
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Trial report
Hey all - It's been a while since I've posted on the forum. There has been a lot of life issues going on that had to be dealt with. Anyway as for how I am doing. I just completed a year on the MPDL3280a plus Avastin trial. For the first few months of the trial there were few side effects and those were easy to deal with.…
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Nerve Damage/Muscle Loss following Surgery
Has anyone in this forum suffered with numbness, pain and/or muscle loss following their surgery for kidney cancer. Since my procedure in October I have been dealing with this and it is awful to say the least. I saw my urologic oncologist on Tuesday and he stated that sometimes nerves are accidentally severed during…
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Sutent side effects schedule
John is being put on Sutent. I know there are side effects to be dealt with, but I'm trying to figure out if there's a general 'schedule' on which they happen after taking the drug. For example, does nausea happen, say two hours after? Diarrhea four hours after? I realize everyone is different, but if almost everyone who…
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Inferior vena cava filling defects on CT
On my recent scan this was noted, 3 months after surgury and my being on votrient for 2 months. The are doing a sonogram to help determine if its a clot or possibly a new thrombus. feeding of direct access to the blood supply. Worries me because they removed a large thrombus from my IVC during my nepherectomy. Neither one…
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Thaxter
Has anyone heard from Thaxter? Alexandra? What other regular posters are missing? Some people just quit but others disappear without warning. I don't like it.
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is it linked?
My RCC was found in the spring 2012 and removed Nov 2012. At the time of diagnosis I was suffering from chronic intractable migraine. Migraines were better for a brief period but has been chronic and daily for over a year. I also have daily flank pain and pain in my spine. Could this be signs of a recurrence? Despite much…
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New to kidney cancer biopsy Tuesday
Hi, someone just told me about this board, and suggested I stop by. 13 years ago my Dad was diagnosed with colon cancer, had a colon resection, then colonoscopies every year for 10, then doctor said he could wait 3 years. 3 years later, colon cancer was back, so he had another colon resection this summer. My Dad had a LOT…
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1year scan results NED
Just got out of the urologist appointment to get the 1year scan results and everything looks fine!! NED The 3 pulmonary nodes(3mm, 3mm,7mm) are stable. Next scan in six months!! Wine and steak today, pizza and beer tomorrow!!!! ;-)
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1 year
So, had follow up with Urologist yesterday and there is no evidence of cancer. So, yay! It's been one year and that is a huge relief as you all know. There are multiple cysts on my remaining kidney, one of which is pushing 5cm. The septation is thin and he wants to keep an eye on it. He doesn't see any reason why it would…
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Family Affair continues
Hello everyone, I've been so swamped this month and have very little time to get on her but I still think of you all and feel very reassured to know that you all are here. I'm excited to say that any day now I will be a nana for the 4th time!! First granddaughter!!! My son has recovered nicely and was back to work two…
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Changing from Sutent to Votrient ... Advice?
Original surgery in Feb 2013. I've been on Sutent since Oct 2014 when 5 mets showed up in my chest. The Sutent (plus radiation) effectively shrunk the mets until now. The old mets are either gone or stable, but one new one showed up in this week's PET scan. We're taking that as a signal that my cancer is becoming resistant…
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Always get a second opinion.
The doctor said, "The good news is I can cure your headaches. The bad news is that it will require castration. You have a very rare condition that causes your testicles to press on your spine and the pressure creates one hell of a headache. The only way to relieve the pressure is to remove the testicles." I was shocked…
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Anniversary and Scanxiety
My three year anniversary of my diagnosis and nephrectomy are fast approaching. I don't hang out here as much, mainly because my work has become increasingly demanding so I don't have time to browse and reply like I used to. Three years ago I spent Thanksgiving looking for a surgeon to remove my kidney after spending time…
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My Story
Hi All, I've been occationally looking at this forum for the past two years, and I thought it was time to share my story for the benefit of others. I'll be succinct. I'm male, 55yrs, and have been physically active all my life. So, for the record: * 2012: Pee'd blood, kidney pain. Went to clinic, thought to be kidney…
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Mom with stage 3a clear cell carcinoma, story.
Hi everyone, While i cannot say i myself have been diagnosed renal cell carcinoma, but the most important person in my life has been diagnosed with this, my mom. At first we had no idea, she presented with gross hematura, and within 2 days a large mass was shown by ct on her left kidney measuering 14 x 12 x 10. So quite a…
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SCCA/UWMC (Seattle) Kidney Cancer Specialists
I am recently diagnosed with Stage 3 Kidney Cancer. I have been referred to specialists at Seattle Cancer Care Alliance/ University of Washington Medical Center. I am wondering anyone on the forum have been treated at SCCA/UWMC. I am just looking for some feedback on specialists used, things to watch out for, impressions…
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Medical MJ
We haven't discussed this topic in a while. It's like keeping skeletons in the closet or having a strange uncle Stanley that no one talks about. I haven't talked about it much because I never wanted to jeopardize my status with my doctors, my care givers, and insurance. However, medical mj is available here in Ct. I have a…