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Kidney Cancer

Archives for January 2014

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…
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…
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…
Our annual survivor trip
Eleven years ago last August I had just got out of the hospital from my neph. and my my wife thought we should go on a Carribean cruise in January to celebrate my recovery and the fact that I had not checked out (she really thought I might check out soon in the begining). The C word was a lot more scary to me then, than it…
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…
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…
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…
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…
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!!
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.
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…
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…
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…
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…
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…
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…
On being back
hey all, it's good to be back, and I have missed you. i tried to convince myself that cancer wasn't really mine. I tried to bury the fear and uncertainty, get lost in work. i even tried to convince myself that chromophobe RCC was no big deal, cut it out and move on already. didnt work. i apologize for bailing. I won't…
Scan #2 results: N.E.D.
I am both celebrating and giving thanks tonight. I am blessed. I meet with my surgeon, Friday. I suspect he will put me on a 6 month schedule for scans. Many thanks to all "club" members for the kind words of encouragement and prayers. Love to all, Izzy
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…
Renal Pelvis Freaking Out Again...
I just read the paper work I got from urologist. So far I only saw a Urologist who refered me to a surgeon after he got my songram. It said malignant renal pelvis. So I googled that and I saw that it is very rare and I stopped reading because I'm so freaked out my eye is twitching. I haven't gotten approval for the CT scan…
Sleep Apnea
Hi All..!! OK, this is (for some) an important subject. If you snore badly.. you should get checked out for Sleep Apnea. I will try to make this short... but.. OK, so after my March 2012 aurgery, I was found to have an Arythmia. I also knew I had a sleep issue. Finally I got a referral to a pulmonary Doc and he did the…
I am surprisingly calm as I wait for my scans
Hi, Today starts the Fan 2014 Scanathon for me. I have already been pokes, probing comes next. And tomorrow, I glow. Thurs, the results. I am surprisingly calm. I have some things I am concerned about -- wierd abdominal pains and swolen lymph node, but I will have answers. And if they are not glowing things (on the PET), I…
Leather Goods/ Vinyl / Textiles (Bikers?) Carcinogenics
Hi, I was doing some internet reseach and read that certain chemicals used in the manufacturing of Leather Goods and Textiles can be carcinogenic and can be associated with Kidney Cancer. I also noticed that a few of the members here might be bikers as in motorcycle riders. My Father both have been diagnosed with Kidney…
First post--long wait for PET scan results
After a couple of years of seeing my PCP for diabetes, weight loss, anemia, I finally got a CT scan in August of 2013 where a 10 cm tumor on my right kidney was found. Also got a negative bone scan before surgery. Radical nephrectomy on 9/13/13. Recovery has been pretty good. Went back to work after the govt shutdown ended…
Diagnosed This Week by Sonogram
Hi, I had an MRI for back pain and a renal cyst was discovered. I had a sonogram and was referred to a urologist who told me this Thursday he was pretty sure it was cancer. It was described as a Bosniak III 3cm cyst on my lefy kidney. He referred me to a surgeon and I'm waiting to get insurance approval for an CT scan with…
Stewart is gone!!
Stewart is gone!! Surgery went well. Docs were able to remove tumor without taking any of the kidney because it was "laying" on the back of the kidney, they told me they got it all, so I hope they are right. I have 6 incisions, one is giving me grief that is by my hip bone but taking pain meds is helping. Getting stronger…
Tired and concerned
I had a gallbladder attack on 11-13-13 and a CT was done where they found a very large Right kidney mass (ended up being 12.5 cm). So I had and open cholesctomy and radical nephrectomy with embolization of the mass prior to surgery. The mass was into my vena cava which was resected also. This was done on 11-21-13. I have…
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…
dissecting CT
Hey y'all, I received my CT report in the mail today. I don't go back to my oncologist for 3 months, at which time, I guess he'll discuss these findings with me. Until then, I'm left to interprate them on my own, with the help of google, of course. And hopefully, y'all. The CT Chest Impression is negative for thoracic…
Trying Palmitoylethanolamide/ PeaPure for Pain Management
Team, I have had chronic back pain since my nephrectomey, IVC thombectomy, and lymph resection in 2009, and it gets worse as time passes. My back is stiff in the mornings, and after I have been seated or lying down for long periods of time. At its worst, the pain radiates to my hips. I have intentionally avoided both…

Kidney Cancer

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