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Scan results Votrient/Pazopanib 8 Weeks In
3 Months after my diagnosis/Nephorectemy and 8 weeks on Votrient/Pazopanib I had some shrinkage of my lung mets, not huge though. Last scan was Sept 21. Current Scan Oct 20. My largest nodes where 2.0x1.9cm and 1.0x1.0cm with numerous others throughout all lobes of my lungs. Shrinkage on these was 1.6x1.8cm and .9x.8cm…
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Broken ribs.
Long time, no see! Hope you're all doing well. I had open heart surgery and a thoracotomy in July. Chest CT after thoracotomy to check for collaterol damage (fractured bones) that came back negative. Coughing end of Sept. and ribs started hurting bad (same side as thoracotomy). X-rays showed #6 rib broken. 3 weeks later,…
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Malignant ALM
So i have in fact made it to the other side of my Partial Neph. I was in the hospital for 6 days and it's been 12 since my surgery. Even though this was a robotic partial it was by no means an easy recovery. But here I am among the living again. There were complications and the tumor was larger then originally thought…
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Stage 2 to stage 4 in less than 10 months
Hello all. I have been away for a while and have come back to share information I had hoped not to share. A recent needle biopsy confirmed that my RCC has metasticized to my mediastinal lymph node. I have a couple of nodes on the lungs - 4 mm and 9 mm - that are "indeterminate", however, are most likely mets. This is a…
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Thanksgiving
Thanksgiving is Turkey, a visit from Uncle NED and just watching (5 minutes ago) my grandson on center stage in the Macy's Thanksgiving Day Parade (he was one of the drummers in the Walled Lake Central High School Marching Band which followed Cirque de Soliel). Icemantoo
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MSK Research on Nanoparticles in Targeted Therapy.
Since I had my surgery at MSK I receive their newsletter and the latest one had some very promising findings. While researching the ability to deliver nanoparticles to target lung cancer tumors, they found that while very few showed up in the lungs, many ended up in the proximal tube where RCC starts. So now they’re…
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Bowel wake up after partial left nephrectomy done open method
Hello my name is Randy I'm currently in recovery mode at UW Hospital in Madison, WI after having a 2.8cm cancerous tumor removed from my left kidney on 11/24/2015. I was wondering how long it takes for the bowels to wake up. When I started flushing the bowels early Monday afternoon I never got to clear fluid. I went just…
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Not Sure What to Think
I have a scan a week before Christmas last year two days before Christmas I found out that my cancer returned and that I was stage IV, my wife and kids and I made a decision to not let that ruin our holiday. I was in NED the last two scans. Starting two weeks ago I have begun coughing up blood and blood clots sometimes a…
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Back spasms
My cancer was found in September after my Dr sent me to the ER thinking I had appendicitis. They did a CT scan and found that I didn't but did find a tumor on my right kidney. On November 9th I had a partial nephrectomy and recovery has been ok so far. However today I have had the worse either back spasms or someone called…
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Some more pictures
Hi, guys, So I've been a little quiet on here lately; Jake has been a good baby overall but between working and taking care of him I've had literally ZERO time... Just thought you'd enjoy a couple more pics of his first few weeks. I'll try to be more active here as things calm down. I've seen some good news lately; very…
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nesting
I understand expectant mothers do this. But I remember doing this a few years back. I seem to be doing it again. I am cleaning, disposing, and giving things away. Maybe preparing for winter is part of it. Simplifying my life is a big part of it. Maybe being retired has something to do with it. The uncertain future of…
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I officially joined the club today
Today I officially joined a club that I never wanted a membership to... My doctor, from MD Anderson, called this evening with the pathology results, and I did have cancer. I actually had two masses on my right kidney. The first was 2.2cm and the second one was 8mm both were malignant, but both are now gone and I got to…
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NED
Hi everyone. I've been lurking around these days trying to keep up on all that is happening. I had my one year scan done last week and although I have not gotten the official word, I believe that I have had a visit with uncle NED. I have seen the films and am still waiting for the report. Films to me show a couple of cysts…
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Stage 4 breast cancer for 18 years. If this isn't inspiration I don't know what is
This made me cry and laugh and is a great story. http://www.usatoday.com/story/news/humankind/2015/11/25/18-months-turns-into-18-years-stage-4-cancer-survivor/76378732/
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Nivolumab is FDA approved to treat Kidney Cancer.
YES! http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm473971.htm
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Hepatitis is cured !!!!
Yeah, we did it !!! :-) Time for champagne. After all, virus damaging the liver is eliminated, so we could damage it a bit with alcohol :-) Thank you all for support, it is so important and helpful! Alla
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warning about Nivolumab
Nivolumab is a most promising drug but it appears to carry some risk of triggering a stroke, as i have discovered. after treatment with Nivolumab for several weeks i had a (relatively mild) stroke. may be because drug causes blood vessel inflammation. evidently this might be preventable by taking low dose steroids while…
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Anyone have a lot of liver Mets?
I seem to have a plethora of liver Mets that have sprung up since March. Four have been sized - the largest is 2 cm, but the CT refers to several others as well. They are scattered throughout the liver. I confess that I googled liver Mets and that was disheartening - prognosis is poor when you've got lots - or so possibly…
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Anyone Stage 4 and still working?
My husband has been on Short Term Disability for 4 months. We were hoping he would go back next week but we changed our minds. He is just not well enough. His main problem is fatigue. I just worry about the "what ifs" he can't go back. I don't want to be a Debbie Downer but I want to be realistic and plan for our future.…
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Scanxiety, sort of...
Hello everyone! It is time for our family to worry a bit again. Not RCC this time, but that another C - hepatitis. Yesterday my partner got tested for viral load, that was the second test after therapy. If this one is also negative, like the first one, it means he is cured. The waiting for the resulys can last up to 3…
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It is official...
I am home from the hospital and the surgery was not fun at all...the recovery is slow going as well. The path report showed conventional rcc stage T1b (4.6 cm) grade 2/3 contained to the kidney. The doc said that there were only a few spots of grade 3 it was mostly a 2. Clear defined margins, lymph nodes were clear and no…
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Votrient impact to liver
My husband has been on Votrient since July and his last round of blood work showed his liver function was extremely high. Is this common? He will stop taking his daily dose of Votrient for the next week to see if the levels come down which really stinks because this drug has so far showed promising results. Any/all…
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Uncle Ned came for a visit....but is holding his breath
Hi all, Just wanted to share my news. I had my CT scan done today and immediately went up to the oncologist office....to wait for the results. He said it looks good! But we have to wait for the official report. I call next week for the official report. I told him about my thyroid (multinodular goiter and the 3 nodules that…
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Encouraging new news for RCC patients
FDA Grants Priority Review to Nivolumab for Renal Cell Carcinoma Silas Inman @silasinmanPublished Online: Monday, November 16, 2015 Michael Giordano, MDThe FDA has assigned a priority review designation to the PD-1 inhibitor nivolumab (Opdivo) as a treatment for patients with advanced renal cell carcinoma (RCC) following…
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child support work with LTD and SSD
How does child support work with LTD and SSD Step daughte dropped off on 11/7 with all her belongings. Bio mom planning on moving to another city Thanksgiving weekend. Bio mom doesn’t work and has not worked in 7 years Bio mom boyfriend didn’t work for about a year; started working 11/2. Bio mom will not modify child…
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From dead man walking to NED
Three years ago, I gave Stage IV RCC with sarcomitoid features. I was given a very low five year survival, and a 20% chance of 3 year cancer free survivial. But I was lucky, though. My Met was lonely and was surgically removed. I scoured the literature to find something promissing -- anything. And, the only thing I found…
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Metastasize to Diaphragm
Anyone ever heard of kideny cancer metastasizing to the diaphragm? My husband had this happen and was able to have the entire lesion removed and his diaphragm repaired with bio-mesh by a wonderful surgeon. He was able to get clean margins on all sides. I just thought his was unusual and wondered if anyone else had…
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Family Affair
Hello All....Well my son has just had his radical nephrectomy. Doctors were and still are completly baffled about my sons tumor. If some of you don't know his story. My son, now 36 years old, had a tumor rupture 11 years ago in a foreign country. Very Serious!!! At the time doctors diagonsed as Angiopliloma. He was…
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Those with sarcomatoid features
I wanted to know if others are willing to share there stories of treatment results, specifically stage 4 grade 4 with high necrosis and sarcomatoid features. I went to Johns hopkins today and the info I recieved depressed me a good bit. I had some missunderstanding of how the treatments worked. They suggest HDIL2, of…
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Having a hard time believing in what my doc says...
Some of you already know my story. I went in for lower left abdomen pain only to be told that I have a stage 1 4.5 mass in my RIGHT kidney. The doc is saying there is no blood vessel or lymph involvement but due to location they have to do a radical. My problem comes in the fact that I am obsessing and I mean OBSESSING…