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NED & unexpected problem
I got my results of the lasts (and last) quarterly scans: NED. I say last, as they want to stretch out to 4 months. Funny thing is the MRI report said, rather then NED, No Definite Evidence of Metastatic Disease. The problem is I had been having my care through NIH's familial RCC protocol. Now, I am kicked out, and have to…
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New in town
Hello all, I am new to this board, but not new to RCC. I am 51 years old and at age 45 discovered a lesion incidentally on one kidney. I had it removed in 2010 (2 cm, clear cell, pT1NxMx) and am receiving annual renal, CT scans, and bloodwork. NED so far. I am reminded daily of, and humbled at, my good fortune. Although my…
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Ibuprofin
Hi, I started taking ibuprobin regularly 2 years ago. I took about 6 a day which is the maximum dosage. I took 3 in the morning and 3 at night for back and joint pains. I'm wondering if this contributed to my condition. I also in the past few weeks since my "cyst" or whatever it is was discovered I have stopped almost…
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19th CT...but who's counting
I did...plus numerous X-ray/US combinations, 1 bone scan, 1 PET scan, 2 biopsies, 3 surgeries, and too many vials of blood to count. Saw my ONC nurse this morning and overall report looks standard and unremarkable. It was recommended I see my PC and have an endoscopy for possible polyp in the stomach; plus come back in 3…
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Blood Pressure Medication and Renal Impairment
My doctor recently put me on a fairly popular blood pressure medication, HCTZ. He selected the lowest dose, 12.5 mg/day. He'd told me that at this dosage it was not diuretic. However, when I started taking it, I definitely felt the effects and my blood tests appeared to show that it had had a diuretic effect (my RBC and…
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Back from Seeing my Surgeon!
Apparently my local Hospitals review of last weeks scan was both correct and incorrect. I do have three new growths but they are not on the kidney. They are above the kidney and below the liver, they have a blood supply and in total are just over 2cm. They are not cysts! and they have grown since September! My Surgeon…
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Pathology Report on Arnold
Well today was the day to make the trek to Hamilton to see my superstar surgeon for the pathology results on Arnold Size: 13 cm X 10 cm X 9 cm.....apparently Arnold was on steroids! lol T3a (or T2 - see explanation further down in my message - nothing is every straight forward in this life of mine!) N0 M0 Renal Cell…
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Does anyone else have long term "achiness"?
Hello again...hope everyone is staying warm through this cold January. I had a laparoscopic robot assisted partial nephrectomy of a 3.5 cm clear cell rcc ( stage 1 grade 2) in the beginning of September. i have been blessed with a good recovery. Have had 2 rounds of ct scans since then with good results ( lung nodules…
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I have a date with a robot
Had my CT this morning. Good news is no immediate evidence of lymphnode involvement. Just one small lonely tumor on my left kidney, positioned just perfectly for partial nephrectomy. Just hope it behaves for now until I have surgery, which is still about a month away. Doc felt very certain it was RCC. Won't know for…
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that's ok...
does anyone know what this means? it is on my ultrasound report. thanks
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Good news AND a hidden blessing~
Hello to all spiritually & virtually connected by Kidney cancer!! Got my path results last week at my f/u appt with Urologist. Yes it was RCC but it appears to be all gone now with my kidney being removed! Honestly, I never had any concerns, even with the dreaded "C" word..as I have so many other chronic disorders to deal…
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Having unusual pains past few days.
Its been about a month since my tumor was discovered, and about 7 months since my dramatic unintentional weightloss began. Over the past few days new pains have cropped up and I don't know what to attribute it to. I've been getting some stabbing pains on both sides of my lower back and on both sides of my groin. Also after…
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First CT Tomorrow
Hi, I'm not sure if I belong here or on the Bladder Cancer boards but I'll tell you one thing. They don't respond on the bladder board. I have my CT tomorrow morning and I meet with a urologist surgeon in the afternoon. Unfortunately I'm bringing my disc without a radiologist report. I hope he knows how to read them. I…
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New calcifications
Hello- I am new to this forum. I am 47 year old woman. Non smoker and not extremely overweight (I could lose 20 lbs). I just had a partial nephectomy to remove a 3cm tumor on my left kidney. The surgery was 3 months ago. I was told it was rcc and needed to come for regular follow up ultrasounds to be on safe side. They…
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Is this what I should be expecting?
I have a generalized anxiety disorder and I have always been afraid of doctors. So much so that for all of my adult life I never saw one, about to turn 45 by the way. Recently my girlfriend gave me an ultimatum to get help for my anxiety or we were through. I love this woman with every fiber of my being so fought with…
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6 weeks scan results... Chuck is involved in the Anti PD1-IPI trail GOOD NEWS :D
Chucks scan result were read to me over the phone this morning...He had his 3rd infusion of the combo of drugs Tuesday and scans Thursday.. Some of the Tumors in his Lungs are completely gone or have resolved as they say... the other have had significant shrinkage...His liver Tumor has shrunk by OVER half... the lymphnodes…
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Nivolumab side effects, efficacy
My wife recently started on a clinical trial with nivolumab. So thankful and excited about the trial but I wanted to solicit the experience of others. My town main questions are: 1) What side effects have you experienced? 2) What was the time course of being on the drug? When was the first scan? Did your scan show tumor…
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Wording in reports
I was looking at my radiologsts report from my scans. Instead of no evidence of disease, the wording was no definititve evidence of metastatic disease. Is that the same as NED? I can not really ask the Doctor, because I have been kicked out of the NIH research study. (I tried, and was told (by the fellow to follow up with…
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Weird scan results. Any input before operation would be great!
I recently had a CT with contrast where they noticed a few enlarged mesenteric lymph nodes. Has anyone encountered this? Now they are wanting to do a biopsy, via an excision. Meaning major surgery again and of course Scanxiety to the max. =(7 HISTORY: Chromophobe RCC 10cm Open nephrectomy, left kidney removed in it's…
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Yesterday was great !
I got my scans yesterday at Cleveland Clinic . All clear ! Nivolumab continues to kick cancers butt . I also got my 36th infusion . After more than two years on this treatment the very few mild side effects which I might once have experienced have faded away completely . The only side effects I ever had were a little…
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first scan after operation
I had my first ct scan/blood work yesterday and all was well NED. Now its going to be every 6 months.
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newbie looking for help
Hello to everyone on here. My Dad was diagnosed on June 25, 2013 with stage 4 RCC, on July 9 we has a appointment for treatment options. To make a long story short, we got a apology tour , tort reform and apology letter. We did not meet with Doctors but with administration. They told us that his scans they did 2 years ago…
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Path report
Path report showed oncocytoma. Getting stronger every day! I want to thank each of you for your support and wisdom when my world was spinning. I wish you all health and every happiness, you deserve it!!
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HYALURONAN
I HAVE BEEN SCHEDULED TO GET INJECTIONS OF HYALURONAN ACID IN MY KNEES...A TOTAL OF THREE INJECTIONS FOR EACH KNEE. i AM 60 YEARS OLD HAD MY KIDNEY REMOVED IN 2008 FROM RCC...A LAPROSCOPIC NEPHRECTOMY WITH HAND ASSIST. IT WAS GRADE 2 ABOUT 8 CM ( MAYBE MM NOT SURE OF THIS MEASURING SYSTEM) ABOUT THE SIZE OF A PLUM. NO…
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Kidney Cancer Patient and Survivors Conference in Los Angeles Saturday, February 22, 2014
I'll try and post the speakers/topics soon. It will be from 8am-2pm at the following location: Cedars-Sinai Medical Center Harvey Morse Conference Center 8700 Beverly Blvd West Hollywood, CA 90048 If you message me privately, I'll send you a picture of the agenda via email if you like. It includes speakers from Cedars…
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I'll take it!
Scans today. A few stable mets. The rest are gone or going. I am a fortunate guy. 18 months of nivolumab and 4 rounds of Il-2. Still getting zometa. Next scan in 3 months. Damn! Is life good or what? This means that about 90% of my cancer has disappeared in the last couple years. AWESOME! AWESOME! AWESOME! How long can…
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1st CT scheduled in about a year... am apprehensive
Hey everybody, diagnosis- Stage 2 RCC- 10/01/2011 partial neprhectomy - 11/09/2011 Pathology - Malignant Non invasive, Not metastised 11/30/2011 I know I'm brand new to these boards, but I wanted to post that I'm going in for a check-up CT /with contrast of Pelvic,Abdomen, and Chest on Thursday 01.09.2014. at Virginia…
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Is a brain scan (or some test) part of a normal work-up for all patients who have follow-up scans?
I am totally in the dark about this topic and I was wondering if someone could inform me. My husband is Stage 4 with mets to bones. Sometimes I read on here where someone has had mets to the brain and is undergoing radiation. What I would like to know is how are brain mets found? What test is used? Is it part of the…
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Radiation Exposure - How much is too much?
I was wondering if anyone tries to keep track of all their radiation exposure? One of the things that bothers me, is that there is no central "person" or "doctor" or anyone really keeping track of how much radiation I'm being exposed to. Each doctor makes a decision to perform a CT or MRI in isolation, without having…
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CSN study
Please excuse the long post. A number of members have posed questions on the discussion boards or emailed me for more information about the CSN study that has been underway since November 2013. I thought it might be helpful to post the most common questions and my answers. What is the CSN survey? What is its purpose? The…