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Musicians: a dumb idea
So I play guitar, harmonica, and used to be able to get by on mandolin and tenor banjo. Fox plays guitar Thax plays mandolin. There must be a way (Skype?) that we could put some music together. We could be Hey Hey we're the Lumpies
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RCC and VHL
Im a new member! Hello. Im 41 years old and was diagnosed with RCC at age 32. 4cm clear cell carcinoma stage I confined to kidney. Right side partial nephrectomy. All has been clear for the last 10 years. Recently had a run in with a kidney stone and had a ultrasound which said I had renal cyst 4.5 cm. A 6cm FNH on my…
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Home and Recovering After Second Surgery
Hi Everyone, A week ago I underwent my second open surgery which finally resulted in the total removal of my right kidney. Still waiting on pathology report but pretty certain that the hard golf-ball sized tumor was indeed malignant. The surgery was a couple of hours longer because of previous surgery scar tissue…
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39 months NED
Hi All, I don't come here often anymore but this place sure was/is a blessing to me back in December of 2011 when I received my diagnosis. It is awesome to see many people still here from that time but sad to see so many new faces. I just wanted to report good news for my old friends and give the newbies some positive…
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6 month CT results: ...
NED oh yeah!!! All clear, still have this small 3mm nodule on lung but it hasn't grown since last scan so... Really happy with the results!! Next step, genetic test in a couple of weeks and next Ct in 6 months.
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UPDATE: NED! Scan day on Wednesday, 18 months post op Stage 3 chromophobe
Well, it looks like my husband is up next in this streak of scans. . . Wednesday. I think right now I have the opposite of scanxiety. Bizarre calmness. I don't think I would be able to go through it without the support of you all here. It has been a very long 18 months and our new normal of living between the scans as I…
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Nervous, scared - should not have read my reports
Tomorrow is my follow-up wtih Dr. Molina. I'm praying for a positive report, but after reading my old radiology reports I'm not so sure. The biggest liver leson did grow from the time of my CT scan to the follow-up MRI. From what I understand growth is not good. In addtion, the radilogy recommendation is metastasis must be…
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Stage 3 question
I have noticed that most of the people here are stage 1, 2 or 4. I believe that there really aren't that many stage 3's out there - am I right? Maybe it is my scanxiety (scan coming up on Thursday) but I really am just wondering how many stage 3's out there have remained stage 3? Also I have noticed that treatments have…
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My doctor is retiring
Just got a letter from my oncologist, Geoffrey Weiss at UVa, saying he is retiring July 1. They will send a follow up letter telling me who my new doc will be I guess. I did meet one other doc when I was in for IL-2 so maybe that will be him. I wonder if maybe Dr Weiss's reluctance to go for Nivolumab off label had…
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Question - frequency of scans vs. Xray
My Oncologist is now ordering just 1 scan/ year. Xray & bloodwork only at 6 months. She says at the 2.5 -3 year mark with NED that this is fine. Thoughts? I've been getting 2-3 scans/ year and the 1st year I had 4. I had a 5.0cm RCC Stage 1 / Grade 1 - My surgery was 07/2012.
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My Wish
My Wish I wish there was a cure for cancer All cancer Not one over the other Who gets more money than the other- Just cure cancer! No more tests CT scans, MRI's, Bone scans, Pet scans, mammograms, Colonoscopy, endoscopy, which one works better? No more needles No more contrast, or without Just cure cancer All cancer No…
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ct scan results
Well results are in. Plueral-based metastasis in right upper lobe reduced slightly in maximal dimension from 22mm to 19mm. Left upper lobe metastasis reduced in size from 8mm to 5mm. Multiple other pulmonary metastases show similar reduction in size. Medially at right costophrenic sulcus a metastasis is again noted. This…
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I've been peeking in...
Hi everybody! I've been peekin in very often since my partial Nepherectomy on September 30th. Okay, where to start. I do speak english and do a lot of reading in english as well, but writing about feelings and so on is much more complicated for me to write about. I want to say I basically believe in the good of people but…
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New need advice / update
Update 14/04/2015 is the date of the 14/04/2015 is the date of the surgery toumer was removed send to the lab so far what I know it's gread1 satge 2 I leaft the hospital today I was have sleep... So I really don't know what's that mean all I remember the doctor was happy.... I will keep you posted... God bless you all CT…
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Votrient failed, on to Afinitor
I had such good results at three months on Votrient so I was surprised today that the six month scan showed progression in all of the lung mets. I will be starting Afinitor and he wants to see me again in three short weeks--maybe because they need early blood tests. I did have my lowest creatinine in 18 months at 1.59.…
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New to CSN, recovering from partial nephrectomy
Hello CSN & Partial Nephrectomy community. I am recovering from a partial nephrectomy which took place at Methodist Hospital in Germantown, TN on March 20. My Dr. found the tumor (turned out to be renal cell carcinoma) on my left kidney during a follow-up to a kidney stone incident from early January. In short, it was a…
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cyrosurgery 7months ago
7 months ago my husband had cyrosugery done to "freeze" a cancer spot on his kidney. Results after left him in much pain and swelling...he is still in the same pain. After many doctors for answers a VA doctor told him it's "RSD" Reflex Sympathetic Dystrophy Syndrome. Anyone know about this? A block is what is talked about.
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Scared myself - hypochondria?
First of all let me say my admiration for the courage you all posses has left a lasting impression. I am not sure what I'm doing here, but Dr. Google led me here while googling. I tend to be obsessive over any research whether it be buying a vehicle or health. I guess I'm just looking for opinions from been there-done that…
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MRI Contrast in Patients with Kidney Disease
I had quite a shock today. I visited my nephrologist for my checkup and I mentioned to her about the two oncologists having a disagreement over the CT contrast. One oncologist will not give me contrast if my creatinine is over 1.5. Because of this, I've had no contrast CTs in the past 2 1/2 years. The other oncologist said…
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Please excuse my whining...
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3 years since nephrectomy
Yesterday it was 3 years since my husband had left nephrectomy. He was diagnosed on March 22nd, 2012 with stage IV RCC, mets to lungs , brain and spine at young age of 32. Today he is doing great after full nephrectomy, 4 rounds of HDIL-2, 4 times cyber knife for multiple brain mets and 3 weeks of radiation for spine met.…
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Verdict in. Round 2 ....here we go!
Hi Everyone, Well after having to wait a couple of weeks because of getting previous scans from prior medical facility the verdict is in. What was a 5-10% chance of a tumor recurring in my right kidney after a partial nephrectomy in 2012 has become a reality. This new doctor is also convinced that the pain I began having a…
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11 late stage clinical trials of Roche immunotherapy drug MPDL3280A
This is good news. More weapons in the immunotherapy arsenal against this horrible disease. http://finance.yahoo.com/news/roche-aims-11-immunotherapy-cancer-160639986.html
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Everolimus - Liver Lesions
Can anyone tell me if they have experience with Everolimus working on liver lesions? I have two sizable lesions on my liver, I was taking Inlyta and it shrank my cancer everywhere but my liver. The liver lesions grew by about 20%. So they pulled me from Inlyta and put me on Everolimus. I started the therapy this past…
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Liver cyst or metastasis?
Hello everyone, I recently have reported NED for my fiance. But yesterday's post by RMollinaro on liver lesion has scared me very-very much... :-( The matter is that follow up ultrasound showed small 5 mm liver cyst, which was not not detected on US and on CT with contrast 4 months ago prior to surgery. The doctor doing…
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3yr scan results= NED
Yeehaw is all I can say! I wish everyone here NED in their journey.....especially Fox and Djinnie! You're both (and everyone else here) always in my thoughts and prayers!!
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HELP please - diagnosis process; how do they know for sure???
Hi there. I’d really appreciate if anybody can share similar experience. My sister is my world. I have no desire to keep going if anything happens to her. What are the chances of this kidney mass being malignant? She’s 44 years old and had a CT scan. The Dr ordered MRI saying the CT scan cannot tell for sure: "Solid…
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Stage I - first 3mth scan showed liver lesion
A bit of my background - had baby in July '14 returned to the hospital 10 days later to have my appendix removed when they found the tumor on my kindney. Skip to September '14 had my right kidney fully removed. My patholgy report came back and I was staged T1b. At my follow-up my doctor said "Everything is great. We caught…
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Stage 4 Treatment Plan
I'm probably opening a can of worms asking this, but here goes... Just for some background, I'm currently Stage 4 but NED. My second tumor in my adrenal gland was just removed via surgery. I had clean scans last week. Looking forward, I'm trying to decide whether to stay where I am or move to another hospital. I'm not…
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Djinnie, how are you?
Djinnie, if you are checking out these boards, please let us know how are you doing? Thinking of you...