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Shrinkage!!! on clinical trial
My dad's latest scan yesterday showed shrinkage in all lung and lymph node mets! Seems that the smaller ones decreased more dramatically than the larger mets, but we are hoping for continued shrinkage during the next scan in October! My dad is on Roche/Genentech's MPDL3280a infusions every 3 weeks at Yale-New Haven with…
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Morcellation
Howdy, folks. I've been kind of disappeared for a while. I was terribly depressed for a while, but seem to be coming out of it. Made it through my one year scans--no evidence of recurrence or metastases. Yay! Anyhow, I've been reading with interest the news about the recommendations not to use morcellation for…
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Has anyone here ever been close to the brink...
and still managed to make it back and get stronger? I'm just curious if there are any stories of those who may have been at deaths door, but managed to fight back. Sorry for the long post, but I guess I'm worried and want to paint a full picture to get any insight. A little back story first. I've written on here a few…
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Back for more IL-2
Back at UVa hospital for another week of IL-2. The two weeks in March have given me 4 months of stable disease. Yesterday's scan showed a few mm growth. I got one dose last night and another one this morning and so far not too many bad SEs. I had a small case of the rigors this morming a full four hours after my dose.…
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Checking In
Hi All, Back in June, I posted that I was going in for surgery for a colon resection, due to diverticulitis and a malignant polyp. Well I had the surgery June 19. And to make an incredibly long story short, I just got home July 24th. Took doc five hours to do the simple lap surgery due to all th adhesions/scar tissue from…
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Partial Robotic-An unusual experience.
I suppose I grew up thinking cancer meant death and if anyone ever told me I had cancer, that I would freak out, act differently, change something and be terribly emotional. My experience seems somewhat surreal, even now 4 months after surgery. In February, I had blood in my urine and did my doctors visits and CAT scan,…
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Very nervous!
So I just had a ct scan and ili just found out that I have bilateral renal cysts. I have a 17mm wall calcification on my left kidney. I also have scoliosis so I always thought that i have lower back pain due to the scoliosis and now to find this out, im really nervous and not sure what to expext.I go to my urologist…
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Here we go again!
The waiting begins again. Had CT scan today to check status of current mets. I am hoping for at least stable with nothing new in the mix. I will know results Tuesday. Just hoping this once that I get a good report. If the report is not good not sure what happens next as far as treatment options go. my best wishes to…
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docs that specialize in Renal Cell Carcinoma Sarcomatoid.
I am trying to find surgeons who are on the cutting edge dealing with Renal Cell Carcinoma Sarcomatoid. I am also looking for hospitals that specialize in Renal Cancer. Any and all help is greatly appreciated. Thank you . ,
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GaryM
Am I the only one wondering why GaryM is so quiet? Time for Funny Bonz 2014.
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Cancer Rally
Hi All... FYI. In case any of you can attend.. Ron Dear Members of the “AACR SSP Family,” As a valued participant in the American Association for Cancer Research (AACR) Scientist-Survivor Program (SSP), I am writing to make you aware of the Rally for Medical Research Hill Day, which is scheduled for September 17-18, 2014…
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Scared.....
A year or so ago I had a huge amount of blood in my urine on several occasions. It appeared to me to be UTI'S. I went to my PCP and they tested my urine and after giving me antiiotics, they later told me i never had a UTI. They referred me to a urologist and by the time I saw her the bleeding had stopped. I had a procedure…
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ipilimumab and nivolumab Updates
Been a while since I last posted but the bottom line is last CT Scan (About 3 weeks ago) showed some shrinkage, a little growth but that was on a site that had shrunk prior, elimination of a small nodule on lung, nothing has grown larger then when I first started program in Feb of 2014, and no new sites. Overall about a…
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So, I'm going in.......
.... To hospital tomorrow for my partial nephrectomy. I will be a fully paid up member of the board and I feel strangely calm. Spent a few hours at the hospital today to discuss op and all I can remember is all the things that could go wrong! All being good I shall be home on the weekend. It's lovely to catch up on…
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Getting Older-Reflections
I turned 71 today. Next week will be 12 years from ny NEPH and 12 years and 2 months from its discovery. I have not had a CT in about 7 years, just Utrasounds although I am scheduled for a CT (hopefully the last one) tomorrow. In the last year other issues have replaced any concern about RCC. Ihave Stage 3 Chronic Kidney…
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Open Partial Nephrectomy--A Message of Inspiration
Hi All, I wanted to post my extremely positive experience I had with my open partial nephrectomy, which was performed on July 10. Prior to my surgery, I made the mistake of reading messages here, and I was pretty despondent. Keep in mind that everyone has a different situation and experience, and you cannot draw anything…
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Kidney Mass
Hello, I am new to this group and this is my first post. I wanted to get some advice. I went to the VA for my anual exam and they saw blood in my urine. They sent me to get a sonogram and it came back with a mass in each of my kidneys. one was 9.4cm and the other was 10cm. They told me not to worry BUT if there was blood…
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Sending special thoughts and prayers to Neil F. / Nanosecond
Neil, i know you have been having it rough for the past few months and I want to send a special message out to you, to let you know I am thinking about you! I hope your scan goes well today and the Affinitor does the trick for you. In the meantime, I am praying for you. Keep up that positive attitude that you so generously…
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Partial Nephrectomy / Small RCC - Clear Cell
A week ago I had a partial nephrectomy and will be meeting with my Urologist tomorrow. Pathology confirmed the following to me: Clear Cell RCC (1.7cm) Rated a 2 for aggressiveness. Pathology confirmed negative margins. I have a perceived hermangioma in my liver and spleen. The spleen is somewhat abnormal according to the…
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day to day normal stress of what people deal with
On 6/11/14 we met with an oncologist and she "said" my husband has stage 1 recurring kidney cancer that has metastasized (he has 2 tumors in the lungs and several in the abdomen). On 6/17/2014 we went to MD Anderson to get a second opinion because what I have learned online is that you can't be both "Stage 1" and…
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elevated heart rate
I am 3+ weeks out from a full kidney removal. Tumor was stage 1; grade 2 and i walk about 5 - 7, 000 steps a day but sometimes, my heart rate is hyper elevated - > 120 (normal resting for me is ~60). Anyone else experience this? I am meeting with my surgeon tomorrow and will bring it up. If it wasn't accompanied by chest…
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Looking for physician in Northern California
I'm from the breast and uterine cancer boards. One of my bffs was dxd with kidney cancer 5 1/4 years ago. Now there is a mass in her left lung that cannot be accessed by biopsy (thoracic surgeon tried, he could not get to it). He feels the mass is renal cancer mets, not a primary lung cancer. We will visit her local…
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Amazing comaraderie
I just want to take a moment and comment how impressive everyone is. Despite everyone experiencing life changing circumstances, the unselfish support of each other is mind blowing. At a time when being a bit ego-centric would be understandable, I have seen very few people be so. The character everyone demonstrates is…
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2 months between diagnosis and surgery...too long?
Hi all - My back doctor found a 3.9cm mass on my right kidney and the CT Scan suggested it was something to look into. Received 2 very different opinions from the urologists - one said laparoscopic and the other said it could only be done open. So I got a 3rd opinion and am going with the laparoscopic approach but now the…
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Does anyone know how to look up clinical trial results of targeted therapy drugs?
I am wondering if someone can tell me where you get this type of information for drugs that are already FDA approved and for drugs that are in trial. I'm also a bit curious (as a side note), does anyone taking these drugs have any interest in knowing this type of data? I'm on the fence about whether or not I want to know.…
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HELP I am surrounded by abbreviations!
A little poem... if it makes sense welcome to the club... not that anyone wants to join! Got RCC told by an ONC at U&E Spent some time in ER with a MD Had a MRI and a CT. No PET for me today. (Thats OK, my dog might of got jealous!) Had a RN not a PRN Told its TNM is T3B N0M0 CC RCC thats in the IVC (Try saying that fast…
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Rhabdoid RCC
Hello, April 7th my father was diagnosed with kidney cancer. Our first opinion felt surgery was out of the question, so we got a second opinion. Our second opinion was optimistic, and he was scheduled for a radical nephrectomy. The recovery after surgery was rough and he was back in and out of the hospital. Finally after…
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Stage 1 recurrence?
Just was curious if anyone on this boat had ever been diagnosed with stage 1 RCC and ever had any recurrence. I know statistics say it's very unlikely but numbers don't always tell the truth. If anyone would like to share their story I would appreciate it.
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Scan Results - Not as good as I hoped for
I know I posted last week about scan results and I didn't want to leave everyone hanging. Just got back from spending 4 days in Tampa (I am from NY) so I wanted to share the news of the scans that I received on Friday. My last scan in late February showed a stable disease, no growth, no spread. 98% of the cancer was gone…
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Scan
Scan tomorrow with dye. its been 6 months since last......Damn I hate scanaxiety ;) Hope all you motherfluffers are doing well. I took a little break from the site as we PCS'd to Alaska caught my first King fish too. Again i hope all of you are doimg well.