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1year completion
Well here it is. I get my 18th MDX infusion tomorrow. It is now a year of treatment. Can't believe it. I would have never thought I would still be here if you asked me in Dec. 2011. Response has been incredible. Soft tissue tumors are essentially GONE! And there were plenty of them. A couple of painful spine and hip mets…
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Prognosis is good, why don't I feel better?
Hello all, I had my surgery on November 16, a partial nephrectomy, done laparascopically and robotically-assisted. I am recovering well, though I did try and go back to work part-time this week and I may have pushed it a bit. I have yet to speak with my doctor in person, but we discussed the path lab report over the phone.…
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Can someone help?
Since my diagnosis I have been volunteering with Iberman Angels. http://www.imermanangels.org/ The organization matches volunteers with someone newly diagnosed with the same kind of cancer you have/had. I've been matched with 2 ladies with kidney cancer so far and one really needs help. They found 2 spots on her lungs and…
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Interesting article about the many doctors who had their cancer cures stopped!
http://www.examiner.com/article/dr-burzynski-free-to-continue-curing-cancer This is an excellent article and really raises some eyebrows. Makes me feel like getting a petition started to change the laws and even have the FDA investigated. People are suffering needlessly. It sure doesn't feel like a free world when success…
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Have I mentioned
how much I dislike the high dose steroids? 5 more weeks. The irritability is making us all miserable. Anything over 60mgs ought to come with a dose of happy pills on the side. He drops down to about 200mgs a day starting tomorrow. Sure hope it helps....don't think any of us can take this much longer.
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? Karma?
OK. Here is the thing. I have expressed frequently that I think I am doing well due to Karma. However, I also admit that I don't really know what Karma is. I do believe that whatever it is it only works when it is shared. I am not religious. In any denomination.( I don't know what that means either.) Anyway, I know there…
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Definition lifted from another magazine
I have a subscription to "The Family Handyman," and they explained what a Field Editor is/does as a do-it-yourselfer. "Field Editors contribute tips, share their wisdom (and goofs!), answer questions, test products and help us create content for...(the magazine)." Sounds like kidney cancer patients on this board to me.…
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Just curious...
Today I went for my three month after surgery labwork and chest xray. My surgery was back in August... radical nephrectomy...right kidney... got it all... good report. My curiosity is stirred and maybe some of more experienced people on the site can fill me in. I go to the doctor on Monday for test results. I'm just…
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Clinical Trials and the Outcome!
I would like to get some feed on any clinical trials and the outcome of them. My husband is on Afinitor 7.5 mg right now and he is doing okay with it. I just want to make sure we are fighting this with the best possible treatment out there and wondering about clinical trials. They have had a few at Duke but none he…
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Surplus 50 mg Sutent
Started 28 day on/14 day off regimen of Sutent in Jan 2012. My Oncologist lowered dosage to 37.5 mg when CTs showed tumors shrinking (rapidly!) in August. Have 21 pill "surplus" of 50 mg dose. The pills were dispensed in a conventional prescription bottle (not in bubble pack). Cost almost $400/pill but my employer's health…
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I had cancer and part of my kidney removed robotically on October 22, 2012
On October 22, 2012, I arrived at Johns Hopkins Hospital, Baltimore, Md. To have a 1 cm Chromophobe Cancer removed from my right kidney. Dr. Allaf and his great team removed the cancer using a robot in a laparscopic procedure. This was a major surgery, but less invasive, I have seven small cuts on my abdomine, the largest,…
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Just wanted to say hello......
Hey Friends, I am guilty of not coming here very often anymore, but think of you all often and just wanted to drop in to say hello. A big warm hello to Fox, TX, MNGirl, Gary, Raj, Rae-Rae, OLG and many others, (Sorry for those I missed!). I am hoping and praying you are all doing well. How is everyone? I hope you all had a…
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Da Vinci
I was lifting something heavy at work and bam! Tremendous pain in my back followed. I went home and could not stand up. Never felt anything like it before. Like I had been shot in my lower back right side. Dr. sent me for and MRI and the rest is history. He said I am very lucky he found a tumor on my right kidney. I said,…
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Trial in Nashville MPDL3280A (PDL)
It's been a long 3 days. I arrived home about 2 hours ago and I cannot tell you how good it is to be here! I want to share my experience with you, but I don't want to get too detailed and bore anyone. Suffice it to say that the scans that were taken on Tuesday showed no NEW growth anywhere, and the spots that they already…
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What's New in Kidney Cancer?
Hi Everyone, I got this link today via social media. It looks very interesting and I thought I would share it. It's subtitled "A Patient-friendly Summary of the 11th International Kidney Cancer Symposium." I've browsed some of it and I'll be reading a lot of the articles. I hope it's helpful to all.…
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Kidney constant dull pain
Hi everyone! Figured since I hadnt been on here in a few months I would check in. Been doing fantastic these last few months. Almost 9 months after having the tumor and grade 1 and 2 removed I have been all over the USA traveling, got a work promotion and have an awesome new boyfriend. The only thing that worries me is…
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RCC Clinical Trials List
I got this link from the Kidney Cancer Association's Twitter page. It lists trials that are currently recruiting:…
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stage 2, clear cell RCC, grade 2, need encouragement
Hi My husband had radical neph 2 weeks ago for 12 cm mass on his left kidney. RCC, clear cell,stage 2, grade 2, no lymph node involvement. Cancer was confined to the renal capsule. Vena cava not involved - no thrombosis. SO, I guess if he was going ot have a tumor this big, so far the test results are encouraging. He is a…
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First 6 month test results are in..
Just a little update and some good news..My results are in and all is fine. Dr says no more tests needed all is clear. So now it's onto living my life again and dealing with some heart issues like my CHF and some gastric issues which are just getting under control again, I hope. Got my finger crossed on that one. So it's 1…
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Tivozanib – Coming soon another New Drug in the arsenal to fight Kidney Cancer
Posted November 28 2012 AVEO Oncology and Astellas Pharma Inc. said it has received approval from The U.S. Food and Drug Administration for filing the New Drug Application for Tivozanib. Tivozanib is an investigational compound with proposed indication for the treatment of patients with advanced renal cell carcinoma. The…
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Low-dose aspirin daily...
Given that aspirin is an NSAID... those of us with one remaining kidney should technically avoid it however I was told by my specialist to take one daily (81 mg) in order to prevent heart disease. It has also been shown, at least in a few studies, to have some cancer benefit. Does anyone else here take an aspirin a day and…
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Random musings...Kidney Cancer vs. El Camino de Santiago?
I hope this doesn't sound too freaked up, but I've seriously been thinking about this lately and if you're as freaked up as I am you might even understand my demented mind. To be honest, I expected to die when I was diagnosed with cancer, but now that I haven't, I'm at a loss as to what to do with myself. My biggest goal…
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Toast at 6pm
To all members of this forum, this evening at 6pm, raise your glass and share a toast to "us". We have all made good friends, shared our highs and lows, and felt each others pain. Here is to the positive, effective, influence we have given each other. To us, I toast to a happy Thanksgiving. Let us remember those who are…
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RCC Ribbon Color
Since there are ribbons for cancer awareness, I was curious as to what is the ribbon color for Kidney Cancer. I did a quick search and saw that green or orange is for kidney cancer. What color is most known to be the ribbon color for kidney cancer?
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Partial or total nephroctomy?
Hi, I was diagnosed about 2 weeks back with RCC and the size of the tumor on the right kidney is about 4.8cm. I have met two surgeons - one recommending the radical procedure and the other has given me the option of choosing between partial/radical nephroctomy. I have no other problems and both surgeons believe the…
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Does anyone know how well a CT Scan can image your lymph nodes?
I'm looking to better understand how well a CT Scan w contrast can see the lymph nodes in the body. I'm sure someone on this list has some understanding of this. I was speaking to a friend [ offline - yes I do have a few of them ] and he asked the question. Made me start to think. That's not a question I have asked. I know…
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Prognosis
I had one of my husband's family members want me to talk to the doctor and ask for a prognosis for my husband. His doctor has been wonderful and has said he will tell us as much as we want to know. I know I can't ask the doctor this in front of my hubs but do any of you suggest I call the doctor beforehand and ask? I know…
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Its Friday!!!
Two guys were discussing popular family trends on sex, marriage, and Family values. Bill said, 'I didn't sleep with my wife before we got married, did you?' Larry replied, 'I'm not sure, what was her maiden name?' ___________________________________________ A little boy went up to his father and asked: 'Dad, where did my…
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Collecting kidney cancer information from Kidney cancer patients
As I've stated before, I find this site extremely informative and helpful. It's the place I run to when I feel overwhelmed and spewing with questions, and it's a Godsend. One thing I question, though, in the spirit of each individual taking control of his own health, is there any site or collection area of a site that…
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Two cancers
Hi! I'm new here. Been searching online for anyone who has/ is going thru multiple cancers. Almost 2 years ago I had a melanoma removed. I got over that easily. I figured it was a one-off, you know? Other than a big old scar that reminds me, I didn't spend much time worrying about it. Then last spring they found kidney…