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newbe - do I want to wait or . . .
Hi all, yeah, yet another clueless nube here. I'm going to see the surgeon (urologist) on Monday and am trying to figure a few things out before I get there. Brief history of this mess: I thought I might have a kidney stone or bladder infection or something last December and since I was about to take a 12 hour drive I…
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update Chucks 12 week scans ( Nivolumab+Ipi phase 1 trial)
Hope everyone had a wonderful 4th! Chuck had his 12 week scan Friday..small recap...Chuck was diagnosed with Kidney Cancer last July and restaged to stage 4 in November.. when lession was found on his liver and biopsied.. in Jan and Feb he underwent HDIL2 ..which at the end ended up being no sustained response..Chuck has…
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Update @ 6 weeks
Hello all. I have been away from this forum for a week or so only because I have been unable to log in or when I can get in I couldn't post. June 17 is 6 weeks post surgery for me. I am in the middle of my second week back to work. The first few days were kind of tough because of the drowsiness at the end of the shift but…
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Thyroid out, pathology in
Had thyroidectomy on 4 July - total necessary. Phone call today from surgeon who confirmed RCC. Saw oncologist today as well, doesn't want to start pazopanib until full surgical recovery. Also need a further MRI of L1 vertabrae required by radiation oncologist who is not yet convinced laminectomy necessary - surgeon is…
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Hello again, and thanks.
I'm having some issues figuring out how to use this message board. Thank you all for your warm welcome to this group--though the initiaion felt something like hazing. :(
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Surgical follow-up/Creatinine Levels
I had a follow-up appointment with my oncologist/urologist/surgeon (5 weeks post-surgery). He said that everything looks good, I'm healing well, I look healthy, blood work looks fine. He did, however, seem to be concerned that my creatinine level was at 1.4, when it had been at 1.1 immediately post-surgery. What are the…
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Questions?
Day 14 and still in alot of pain...not near the sites tho. the pain is in my left hip and little down my leg. Stinging/burning pain. Again its not near the incision sites. My incisions feel and look good. Thoughts?
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I guess I'm in the club now.. the initiiaton was a bit tricky...
I've been reading posts and gaining confidence from all of you since I was diagnosed March 10th with a 2.5 cm tumor on my right kidney lower pole. After 2 opinions and waiting to get in to see the surgeon in Cleveland Clinic Florida.. my surgery was scheduled for July 5th. I had a lot of medical clearances to get and had…
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Book that details how to cook to deal with side affects and loss of taste
There's also a cook book for people in treatment, with great recipes which address specific side effects and gives options for how to flavor the food to appeal to the altered taste. It's called "Cancer Fighting Kitchen Cookbook."
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Follow up testing intervals - how long is ok?
I'm approaching my 1 year anniversary for my surgery [ 07/17/12 ] and have had two (2) follow up CT Scand with & w/o contrast [ November was my first, and my 2nd was March - so it's been slightly over the 3/ year mark, but close. My routine has included Xrays, bloodwork, ultrasounds and to-date have been scheduled for…
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Time to decide
First of all I would like to thank all of the regular participants of this site for their time and efforts in educating us newbies to the trials and tribulations of your battles. Your posts have been inpirational, educational, sincere and humourous at times. My small town (very thourough and well versed in the world of…
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Cancer spead
What are the chances that cancer cells from a 2.5 centimeter mass has spread. Saw orthopedic doctor today due to pain in my left shoulder. A bone scan years ago when I had prostate cancer showed that both shoulders were deteriorating due to arthritis. The shoulder was X-rayed today, and doctor saw something he didn't like…
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I'm Still Here!
I'm trying to post this before things get dicey again. LOL For the last two weeks I have logged in, been able to, eventually, post about one response, then I have had all the rest of my responses to threads blocked by the security system. I don't know what is going on. I am reading, I care, but I am having problems…
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First Post OP scan today...results at the Lung Doc tomorrow
I am going for my first post op scans today. Needless to say I am extremely nervous. What I want to hear is "no new spots have been found and the "speck" of dust on the outside of your right lung has not grown or shrunk". What kind of coping mechanisms did you all use to keep calm? Also, does the nervousness get better as…
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Are we crazy?
Hi Guys! We're not frequent posters on CSN but I do "lurk" and love the commaradie here! We have a delima and I am hoping you guys can help. If you've followed us on ACOR/Smart Patients, you know my DH is a 3-year mRcc survivor and was on the Nivolumab + Votrient trial last year. He had record results with the trial…
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What gets you through?
I was recently chatting with someone and the topic of my new favorite song came up - Thistle and Weeds by Mumford & Sons. It became my favorite during my whole ‘You have cancer’ ‘No you don’t’ roller coaster. The last part of the song’s chorus repeats “I will hold on”. If you don’t know the song you should look it up –…
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Anyone else having trouble
Anyone else having trouble getting signed into this site lately? I finally got on tonight after trying off and on for about 3 hrs. I couldn't get on at all last night. Just wondering if others are experiencing the same issue.
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Question about CT scan report
My husband had what we thought were benign tumors in his right kidney for which he would get a CT scan each year to see if they grew. They were first noticed about 2 1/2 years ago during doctoring for a kidney stone that had to be surgically removed. Well, this year they grew. His CT scan was 6/28 and he got a call from…
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A new cancer-detection scanning modality
Yesterday my Daughter drew my attention to some new work in the UK that promises great savings in the field of cancer detection. Instead of using radioactive sugar in PET scanning, non-radioactive sugar can be used, far less expensively, in conjunction with MRI scans. This could have a big impact on the numbers. the speed,…
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Security Issues?
In the past week I have been utterly unable to post or comment here. I keep getting messages that for some reason I have been blocked and referred to customer relations. Has anyone else experienced this? I'm writing this in hopes of it getting published but I simply have to try and hope. Michael
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Fellow patient shared a weight gaining shake from Nutrionist!
I am copying the email here with the instructions in case anyone wants to know how to make it. <<The smoothies will help with weight. For smoothies, the best coconut milk is Natural Value Organic because it has no additives. Unfortunately, the only place I know of to buy it is Amazon, and they are out of stock right now.…
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Fellow patient shared a weight gaining shake from Nutrionist!
I am copying the email here with the instructions in case anyone wants to know how to make it. <<The smoothies will help with weight. For smoothies, the best coconut milk is Natural Value Organic because it has no additives. Unfortunately, the only place I know of to buy it is Amazon, and they are out of stock right now.…
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Position available
Position available for the "new" poster boy of MDX-1106 or clinical trials for that matter. For the newer members here is what you may have missed. Left radical nephrectomy in march 2011. By oct. 2011, loaded with mets with life expectancy of 6 months or less. Several cancer centers only had to say,"Good luck." Fortunately…
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Am I the only one?
Since being diagnosed with stage 4 RCC, and having completed 4 terisol treatments, I still run low grade fevers everyday. My Dr says that that is consistent with my cancer, I take Tylenol alternately with Advil every 4-6 hours just to get me through the day. Does anyone else have this problem? My fevers run from 99.6-101.9…
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Good web site
I found the site at kidneycancerinstitute.com to be helpful. It explains the procedures for removing kidney cancer and has videos showing the operations and explaining what happens. It cleared the confusion for me on why doctors don't like to biopsy kidney tumors.
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Scan results
Well I have my scan result - not great but also not surprising. 1. The lytic lesion on L1 has increased in size and there is some soft tissue bulging into the spinal canal. Immediately referred for an MRI which I also had today. Possible referral to spine surgeon for surgery. She did tell me however tell that it is…
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Hello
Good afternoon, I have been "lurking" on this site for the last couple of weeks--not posting for fear that I had nothing of value to offer. I'm still not quite certain I have anything to offer, but I wanted to introduce myself. My name is Anne, I'm 50, I live in Albuquerque and work in Santa Fe, NM. I had a CT scan Friday,…
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Thank you Everyone
Thank you everyone for all your help over the past several months especially (and I know I will forget people because most of you guys use screen names) Darron, Texas Wedge, Nanosecond, Alice, Mg 1957, Gairim (who for some reason reads the same stuff I do when I should be working), GSRon. I am Alive, Icemantoo, Toilman &…
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Am I the only one...
Am I the only one here who has not had surgery for Kidney Cancer? I have a 2cm growth and my team of oncologists thought it was better to leave it alone and start me on Votrient immediately. I have Stage 4 Kidney Cancer as the lymph nodes tested positve and I have a spot on my liver and lung. No tests were done on the…
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Seven years ago....a long time
Seven years ago, I was told I might live 5 to 7 months, unless...someone or more could do surgery, and they might be able to remove all of it, and maybe it might work, and there might be a trial drug. I was over the moon when 3 physicians at Oregon Health and Science University got together with me in the same room…