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I'm back
Had a couple on non RCC incidents and wounf up in the hoapital and rehah. Hope to get back icing down the newbies in the next few days, Icemantoo
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Indiana University Cancer Center
Has anyone ever heard of or had any interaction with IU Health Melvin & Bren Simon Cancer Center? I have an appoitnment there in 2 weeks because I wanted a second opinion on my records and case and was told these guys are some of the best in the area. I expect they will be fine, just curious if anyone else had any…
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lifetime of fun
I have access to my medical records through the "My Chart" online system. It eliminates the need of getting copies of everything as it is available on line. However, something truely mind boggling became apparent. I can not always remember all my treatments, results of tests, chronological order of my care, and more. Part…
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High Blood Pressure?
Just wanted to know if anyone else with rcc had their blood pressure go very high. My BP has spiked since rcc was discovered on my right kidney. My surgery is not until 28 April. Don't want to have a coronery waiting for my surgery. GATOR
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How Long Is Your Scar/Incision for those with Open Nephrectomys
I see in the literature that there is a newer mini-flank incision of 3-4 inches but I believe mine will be about 7 when I have the surgery on April 6. Anyone get the mini-flank version?
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Diet Soda
I'm curious as to how many of us under 50 who've been diagnosed with some form of renal cell carcinoma (mine was chromophobe renal cell carcinoma) were moderate/heavy diet soda drinkers?
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dying from cancer
Recent deaths hurt me. A few members have been here longer than me. But I'm sort of the last dinosaur. I started as the "Poster Boy" for potential to beat rcc. I have seen death and survived. Now it is like being in the final four. Scheduled to play against UConn. I manage to find ways to postpone the series but it is…
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An incidental finding=RCC
I just found out that I have RCC. I originally hurt my lower back by lifting a heavy object. I began to experience pain in my abdomen, mainly left side of abdomen to the rib cage. Although the pain was along the left side the CT scan did not show muscle tear or any anomoly in that area but a 7cm size tumor at my right…
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NED!
Hello, I can report Uncle NED's visit to my husband today! Abdominal ultrasound - all clear. Chest x-ray was done in December 2016 (due to suspicion of pneumonia), also clear. We are very-very lucky. I am relieved, however, it is not an overwhelming joy as it usually is. Guess it is because of Mark and Footstomper. Almost…
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Footstomper?
Hello, Haven't seen Footstomper for a while. His profile says he was last active on 03MAR. Have anybody heard anything, how is he doing? Alla
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Post Op follow up
Well we go to our Post op follow up with the surgeon who did my wife's partial robotic today. Yesterday was 5 weeks. I'm assuming that he will release her to resume normal activities and go over the Path report ( which we've already had a physician look at it) but I want to hear his take on it to confirm the good news and…
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2 weeks post surgery
Today we went and my husband had his staples removed, all 56 of them! He is healing well and I am so blessed to have him with me! He looks better than before surgert, he has an appetite again and he has a smile! We will see his surgeon on May 4th for pathology report and such! A bit worried but so thankful he is alive and…
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My Turn
Well Tuesday is my turn. I am having a Robotic partial right side. I want to thank all of you who have shared your journey with us. They have helped answer lots of questions and taken a little of the fear "of the unknown" away. I think I know a little better what to expect. Still having lots of emotions but I will get thru…
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The Continuing Adventures of a Lab Rat.
Clinical Trial - Calithera’s glutaminase inhibitor, CB-839 in combination with Everolimus (Afinitor) at Penn Medicine in Philadelphia. I was previously enrolled in a clinical trial with Keytruda (Pembrolizumab) and Incyte’s INCB24360 for the past year and a half. Unfortunately, in June I started to show progression and it…
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Question about after surgery pains
Happy Sunday everyone! So this may be a little TMI but I am just curious if this happened to anyone else. I noticed about 2-3 days after my partial nephrectomy that my pubic bone area and into my groing area it feels bruised. I honestly didn't think to much about it because I figured it may of been a nerve or something to…
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Mark, (mrou50) wife wrote to me.
Mark's last topic was "Hey Cabo, you win" written on Feb 22, with his last response to that post on Feb 23rd. He was going to stop CABO, even though it was working as he was so miserable. Remember? Well a few moments ago, his wife just wrote to me to announce that he passed away. She wanted me to tell FoxHD and the rest of…
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Eight Week Update
I got blood test results back today from eight weeks after surgery. Units are Australian. I'm not sure who's system we copy. Probably UK or Europe. Urea 8.1 mmol/L (3.0 - 8.5) Creatinine 109 umol/L (60 - 140) eGFR 66 mL/min (over 59) Haemoglobin 132 g/L (135 - 180) The Hb is the only result that is (just) outside the…
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Trial
Just got the news that I start the clinica trial at MGH 4/6/17 with Varliumab and Nivoulmab. Every other Thursday. Looking forward to starting this journey.
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thanks
About a year ago, I made my first post, and lots of you answered questions for me. My husband had been diagnosed with kidney cancer, with a 13 cm tumor around his left kidney, and several nodules on his lungs. We tried so hard to get a doctor in St. Louis at Barnes-Jewish Hospital. We heard they did miraculous things for…
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Surgeon's History of Surgeries
Is there a website that shows what type and how many surgeries a surgeon has peformed?
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Good news about a local friend
Another of those trips to a PC for something else. No clear Dx so was referred to a Urologist. He ordered a CT, called her the next day and said I'll see you in surgery in a week. She had an encapsulated, baseball size tumor on her kidney. Had surgery on 3/23 and I saw her at her PC"S office yesterday, out and about. I…
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Thank You seems Inadequate
I have just finished the Preliminary Surgery Scheduling and Insurance paperwork for Surgery April 17th for Left Kidney Removal. In my first Post I detailed the finding as Incidental to Herniated Disc. As I cannot do as much Physically as I would want because of Sciatttica pain. I have been reading past Forum Posts. The…
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Struggling to get a grip...
Hi, I am writing on this forum in the hope to get some answers to my questions after I was told that have about 1 cm lump in my left kidney. I saw my GP for very frequent urination, 20-30 times /day in August- sept 2016. It was so bad that I was feeling nausea as soon as I had a little urine in my bladder. My urine was…
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New Symptoms
Hi everyone, Hope you all are having an enjoyable evening. Me, kind of, LOL! So today 9 days post surgery I started peeing a little blood, nothing crazy, but also passing clots. I am not in pain, I am not feeling unusual and I called my doctor and they seem to be not concerend at this moment but told me to let them know if…
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Pathology Report
So my doctor just called me and let me know that all margins were clear, however, the pathologist doesn't think it's a clear cell carcinoma and they want to send it off for additional testing. I thought he said transitional tromopho, (honestly I am not quite sure what he said now) or something about the chromosomes needing…
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Flank Bulge
I've become very anxious about my open partial in 3 days after reading about this underreported condition called flank bulge. I'm even thinking of cancelling and talking to a few robotics surgeons first despite having all my pre-op testing and support team ready to go for surgery on Thursday. Don't mind the scar but a…
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Almost 4 months post surgery
And got my first post-surgery scan. My urologist sent me to an oncologist for genetic testing to see if I have a syndrome which could be causing all of my issues- thryoid disease, pituitary tumor and the kidney cancer. I guess they wanted some answers since at 43 I am considered "young" for kidney cancer. My kids still…
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living with 1 kidney
what are the repercussions of living with 1 kidney.. my husband will probably be having one removed as he has stage 3 and the tumor is 4" long.. We are still waiting on tests and xray results to come back to see if anything has spread.. His other kidney has slight damage from diabetes but otherwise is OK. We know eating…
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Thank you all.........
The cancer forum gave me Mark's info so I could write to all of you. First of all I want to thank you all for your kind words. It's so tough to know that he is not here. I appreciate all of your support over the years. As I was reading the post, I cried too as Footstomper was the other person I was trying to get a hold of.…
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9 days since surgery
well, I'm 9 days in and doing pretty well. I walked around the neighborhood this beautiful spring morning for almost an hour. There is just one place on my stomach giving me problems. There is an incision between the one by my belly button and the one on my right side where they took out my kidney. Maybe there is a muscle…