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Kidney Cancer Patient and Survivor Conference: Los Angeles
I posted the link to the agenda for this free event. My husband and I attended last year and are looking forward to attending again this year. https://secure.kidneycancer.org/np/clients/kca/event.jsp?event=3970
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New Concern
For background, my wife who is 26 was seen last Sept. for kidney stones. They found a mass that was 3.5 x 3.0 x 2.5 cm in her right kidney (RCC). By late October the mass was removed by partial nephrectomy. They said margins were negative and the Fuhrman Grade was only a 1. The Doctor assured us that it was very unlikely…
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Stage 4 Need encouragement
Can someone tell me if PT4 or T4N0M0 is stage 4. My husband's 14cm tumor was removed along with the adrenal gland and right kidney. Looks like we are looking at stage 4 and could use some encouragement.
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Dietary Guidelines
I had an open incision nephroureterectomy (full removal of left kidney, ureter, adrenal gland, 38 nodes-1affected, and bladder cuff) the eek of Thanksgiving, 2014. Surgeon is 90% certain he got everything. Follow up ct scan was clean. I have been trying to find a dieticians guideline for eating but have had difficulty. I…
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update on my medical issues
As many of you know I have been having problems with my hip have torn muscles out of the bone and severe bursitis. Have seen 4 orthopedic surgeons and none interested in doing surgery on me. THe last one in sept said if my lung doc could get me off steroids for my lungs for 4 months he would do surgery . He order therapy…
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Not eligible for trial - now starting Votrient
It's been a couple of months since I posted and the time has been spent having every imaginable test to see if I might be eligible for the Niviolumab/Ipilimumab versus Sutent trial starting here in Melbourne, It was only a 50/50 chance I would get the Niv/Ipi combination and in the end my kidney function was found to be…
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Need help please read
Anyone that isn't familiar with our circumstances and would like to, read my other post "8cm mass found on son's kidney". NEED HELP... I am located in Missouri. I need to find a teaching hospital known for their urology dept.
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Those with bone mets, please
Hi all I did the nephrectomy five months ago and i'm stage two. Since few days ago I've had a pain at the end of spine during nights, I had almost the same pain ten years ago so I did MRI and there was no problem then I changed the bed and the pain vanished. 8 months ago I did another MRI for another reason which showed no…
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nausea
This is the story, i started feeling nausea four or five years ago which never caused vomiting and didn't happen all days, as I live in a very polluted city I thought it's because of the pollution and nothing important but I also talked to different and many Dr, and they found nothing, right after the nephrectomy I felt…
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Adrenalectomy
Has anyone here had to go back in to have their adrenal gland removed? What were the options? What did you decide and how did it go? Thanks, Todd
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Two year anniversary essay
This month is the two-year anniversary of my life with kidney cancer. A lot has gone on during that time. We all share these: the numbing appointment when the doc first reports that “it’s cancer”, the day of the surgery, the long recovery, the endless series of follow-up appointments at the oncologist’s office and, of…
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Found 8cm on my sons kidney an hour ago
I'm not sure I'm in the right place to be posting this, but my anxiety is through the roof and my husband is at the hospital with our son but i can't be with them because I am home with our other children. My son is 18. He went snow skiing yesterday and had a couple crashes and he woke up this a.m. with a pain in his back.…
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Hypothyroidism and Votrient
I started Votrient three months ago and have had some fatigue and dry skin. I had my first TSH test on 12/10 and it was 26. My second test was 13 with normal values between 1 and 4.5. I do sleep a few hours later since I retired 12/31. The doc wanted more than one test before any meds. Are these numbers bad enough for…
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Importance of post-surgery breathing exercises
Hello everyone! I'd like to use opportunity and stress out importance of post-surgery breathing exercises for those who are awaiting their surgeries. I first found out about them here on the forum, they were mentioned couple of days ago in one post. I asked my boyfriend out of curiosity if he did them. He told that nurses…
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Fill in your bios
Every so often I get frustrated when someone asks a simple question and I have no idea what the apporopriate answer is because I do not know anything about their journey and whether they are Stage 1 or Stage 4. I try looking up their previous posts, but they are not always easy to find. I do not want to giva an answer that…
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1st post surgery scans on Monday - UPDATE
I have my 1st post Surgery scans on Monday and needless to say I am becoming a nervous wreck. So far I have been pretty successful in keeping my conscious mind pretty calm but I think that my subconscious mind is going wacko. I have been having weird pains all through out my abdomin and since they just started a few days…
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I started torisel today
My last scan showed mets to both lungs,liver and lymph nodes. So far no side effects. If I feel as good in the mourning as I do now I'll go to work. Anybody else have experience with torisel?
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Party time
Hi there- Just an update on the first decent test or exam in a year, so I bought an obnoxious purple and pink Minnie Mouse birthday cake/single layer to celebrate yesterday. To refresh...May 2006, you have a mass...or two or three: Dx, 5-7 months if they cannot do surgery. Yes to surgery and Dx'd at Stage IV, T2, N1,M1,…
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Bad News
I hate sharing this information. Today I found out my cancer has most likely metasticized to my adrenal gland. I'd been having some pain on my right side (my surgery side) for several weeks. I decided to email my oncologist yesterday morning to tell him about it. He had me come in and go to urgent care at the City of Hope.…
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Stomach Issues close to Resolution; Endoscopy
Hi, all, Had an endoscopy yesterday; the GI doctor wanted to do one to "rule out" a couple things. This was in response to the stomach ailments that sent me to the ER that initially got the ball rolling on my incidental cancer diagnosis. Long story short, he said he found some areas of irritation consistent with gastritis,…
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First Votrient scan is good news
After three months on Votrient I got my first scan today and the doc showed me all four lung mets are much smaller. Largest one is just under 2 cm after being 3.5 cm on 10/29. I am taking 400 and 600 mg on alternate days
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New Diagnosis
Hello All, I'm 57 years old and over the years I have lost many friends and family to some sort of cancer. Even though I didn't show it, deep down I've always been afraid of it. Jan 8th I went for a CT scan with contrast of my lower intestine because of pain cause by diverticulitius. They saw a mass on my right kidney and…
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Surgery's over....phew!!!
So my husband had his robotic surgery yesterday. It was tough waiting for it all to be over. The doctor said it went really well and he didn't lose any blood at all. When he finally made it back to the room he was a bit out of it but came around quite quickly. He has one larger incision and four very small holes. The had…
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VATS Test
The surgeon did a VATS test and it was confirmed the cancer has entered my lungs. MY wife and I were some how holding out for a good report and that the doctors dianosis was a mistake but that was not to happend so the treatment begins. We meet back with the oncologist in a few days to begin discussing options, he wants my…
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IL 2 response question
HI, I have posted couple of times about my husband's diagnosis and his IL2 treatment.(july '12 and october '12) His response was complete( what doctors and we think),His lungs nodules completely went away. He was on 6th month scans since last january(2014). He has his recent scan last wednesday and they found 2mm nodule on…
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Scared of the Big Bad Robot
Hello to everyone. I came across this page while looking for information about kidney camcer. About month ago, my husband came across a mass in his left kidney. It was completely a surprise to us. He was just getting a CT scan for something else when they found it. We were crushed.....and just in time for Christmas. The…
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Having kidney surgery in February
I was caught off guard last week when my urologist found I had a 5" tumor in my right kidney.. roughly 12 centimeters. My kidney will need to be removed since the tumor is so large. They don't think the cancer has spread outside the kidney but the CT scan does show the narrowing of one lymph node which they will need to…
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Checking In
Just stopped in to say hello. I haven't been on the board in several weeks, but I haven't forgotten about you guys...or my former friend my poor, missing right kidney. Great to see so many familiar faces. Nice to see new ones, even though I'd rather not see you here (and I mean that in a good way). Been busy busy with…
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Questions for the oncologist
Hi everone, we have our first post surgical appointed with the oncologist on 2/3/15. I'm wondering what's next? At the time of surgery 4 lymph nodes were removed and came back clean. Is there still follow up treatments if no further cancer is found. Also my husband has never had a PET SCAN, shouldn't he have a baseline PET…
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ASLAN002 Trial
Hi everyone, I'm new to this forum thing but I'm a quick learner! Has anyone been on or are on an ASLAN002 trial? I've only just started & am curious to how people are coping. Thanks, Gaz