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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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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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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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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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My Interleukin 2 Experience
I wrote this entry in my personal journal but I decide to post it here on CSN. Some people may find this post informative or entertaining. Sorry if it’s a little long. - BDS Background. On May 28th 2012, at the of age 52, I was diagnosed with Stage 4 Renal Cell Carcinoma. I have been on the drug Votrient (Panzopanib)…
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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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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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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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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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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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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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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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I accidentally saw it-- the prognosis is not good
Team, I have resigned from my job and I am applying for social security disability, so I asked my oncologist to fill out a questionnaire. I noticed there was a question about prognosis, so I determined that I would not read that question when he completed the questionnaire. Well, 4 weeks passed before I got it back, and I…
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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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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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Should I Seek Peace of Mind?
Hi, all, So I have a follow up ultrasound, blood test and visit with my urology surgeon scheduled in March 2015. After my surgery on October 21st, I didn't have any further image testing done beyond blood being taken. I did go the ER for stomach pains as a precaution in late November where an ultrasound was done, but that…
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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
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Five years on CSN
This month marks 5 years that I have been posting on CSN. When I had my Neph 12 and 1/2 years ago there was no where to go for information and I was totally in the dark, much like the Newbies are today. Hopefully I have helped a few get thru this which for me in the beginning was terrifying, but when I look back not really…
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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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am i being paranoid or ?
Yesterday I found a small lump on my neck.... I am not sure if it swollen gland or what it is... Should I wait it out or contact doctor... I had pt1a renal cancer over a yr ago. The lump is a little bigger today but not much
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Been a year
Tomorrow marks the day that started the "trip" to the cancer ward. I went in for an eye exam in the morning and ended up spending 4 days in in the cardo ward that led to finding I had cancer. Surgery followed March 3, Does anyone here "celebrate" these milestones? I knw that is not the right word, but you get what I nean.…
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Posting something positive
Hello- I'm from the breast and uterine boards. Approximately 6 months ago I posted here about my oldest friend who has a recurrence of her kidney cancer. She has a single tumor in her left upper lung, in a really precarious place. A local thoracic surgeon (Sacramento) could not biopsy it with his fancy GPS gizmo, so there…
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Sutent Experience
I have not posted much since I came out of my clinical trial but thought I would drop on update on my experiences with Sutent for those folks that are new to the drug and are looking for info. But first a quick background: · Melanoma-2004 · Prostate Cancer-2008 · Kidney Cancer -2008 (left kidney and adrenal gland removed)…
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New trial
Good morning everyone. I haven't updated for a while. There has been a lot going on (unfortunately) - I have been officially removed from the Meteor trial due to some progression and early pneumonitis (a known side effect of everolimus). I ceased all treatment around 28 July. I am now being screened for a new study which…
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PD-1 trial stopped early
http://news.bms.com/press-release/checkmate-017-phase-3-study-opdivo-nivolumab-compared-docetaxel-patients-second-line-s Superior preliminary data for ns lung ca. FDA should approve soon. Renal cell cancer trial preliminary data PD-1 Opdivo vs Affinitor Everolimus should come summer 2015, hopefully and hopefully will be…
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advanced RCC with met. to humerus
This is my first post to this network. In July of 2014, my father-in-law was diagnosed with stage IV RCC. The diagnostic scans showed a large right sided tumor with mets to the spinal cord. This tumor had invaded and destroyed the T-12 vertebral body and is causing spinal cord compression. He also has a venacaval tumor…
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Radical Nephrectomy for 14 cm tumor (RCC) 1/5/2015
Blog entry Radical Nephrectomy for 14 cm tumor (RCC) 1/5/2015 has been updated. Tue, 01/13/2015 - 8:11pm — Terri065 On 11/27/14 Thanksgiving Day and my husband's birthday, we went to the local ER. My husband had back pain and blood in his urine. We thought he had past a kidney stone. Come to find out it was a 14 cm tumor…