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am i being paranoid or ?
Yesterday I found a small lump on my neck.... I am not sure if it swollen gland or what it is... Should I wait it out or contact doctor... I had pt1a renal cancer over a yr ago. The lump is a little bigger today but not much
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Been a year
Tomorrow marks the day that started the "trip" to the cancer ward. I went in for an eye exam in the morning and ended up spending 4 days in in the cardo ward that led to finding I had cancer. Surgery followed March 3, Does anyone here "celebrate" these milestones? I knw that is not the right word, but you get what I nean.…
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Posting something positive
Hello- I'm from the breast and uterine boards. Approximately 6 months ago I posted here about my oldest friend who has a recurrence of her kidney cancer. She has a single tumor in her left upper lung, in a really precarious place. A local thoracic surgeon (Sacramento) could not biopsy it with his fancy GPS gizmo, so there…
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Sutent Experience
I have not posted much since I came out of my clinical trial but thought I would drop on update on my experiences with Sutent for those folks that are new to the drug and are looking for info. But first a quick background: · Melanoma-2004 · Prostate Cancer-2008 · Kidney Cancer -2008 (left kidney and adrenal gland removed)…
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New trial
Good morning everyone. I haven't updated for a while. There has been a lot going on (unfortunately) - I have been officially removed from the Meteor trial due to some progression and early pneumonitis (a known side effect of everolimus). I ceased all treatment around 28 July. I am now being screened for a new study which…
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PD-1 trial stopped early
http://news.bms.com/press-release/checkmate-017-phase-3-study-opdivo-nivolumab-compared-docetaxel-patients-second-line-s Superior preliminary data for ns lung ca. FDA should approve soon. Renal cell cancer trial preliminary data PD-1 Opdivo vs Affinitor Everolimus should come summer 2015, hopefully and hopefully will be…
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advanced RCC with met. to humerus
This is my first post to this network. In July of 2014, my father-in-law was diagnosed with stage IV RCC. The diagnostic scans showed a large right sided tumor with mets to the spinal cord. This tumor had invaded and destroyed the T-12 vertebral body and is causing spinal cord compression. He also has a venacaval tumor…
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Radical Nephrectomy for 14 cm tumor (RCC) 1/5/2015
Blog entry Radical Nephrectomy for 14 cm tumor (RCC) 1/5/2015 has been updated. Tue, 01/13/2015 - 8:11pm — Terri065 On 11/27/14 Thanksgiving Day and my husband's birthday, we went to the local ER. My husband had back pain and blood in his urine. We thought he had past a kidney stone. Come to find out it was a 14 cm tumor…
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Cancer patients, overweight or fit?
Some of my friends who are experienced with cancer, keep telling me I should gain weight and be a little overweight so in case of any possible needed treatment my body has the strength and power. I'm not sure if that's true in general and especially in RCC. I'm fit and go to gym as a routine. Do you have any information or…
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New Scan
Went to Mass General yesterday for the results of the last CT scan. 10-20% shrinkage from last scan. Votrient is still working. Over 2 years now 800mg a day no liver issues. Going to do my best energizer bunny impression and keep going and going.................
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Food for Stutent/RCC
My wifes question, and its a good one. Are there any foods that are helpful with the disease and its symptoms or that help with the drug and its side effect. Thanks Fox, I'm already there with the pizza and beer. And I came out of my 4 IL2 treatments swearing I would never deny myself whiskey or rd wine when I desire it. I…
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GFR
Went to my family doctor today for results for a bunch of blood tests. He said everything was EXCELLENT. I was very happy. I asked if my hemoglobin and B12 were better (very low previously) and he said yes. Hemoglobin is on low end of scale but okay. B12 good. However when I got home, I noticed on the printout that 2…
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Husband having open neph tomorrow.
This is going to not come out right, but bear with me. I've been reading all of your posts, and I am struck by how you are all just a lovely bunch of normal people. Normal, until one day everything changed, and one thing led to another, which brought us all here. Normal. Isn't that a funny thing. Suddenly, cancer is part…
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scANTICIPATION
Trip to NYC tomorrow for my first post-surgery scan results. I think I am going to have a little trouble sleeping tonight. It has all been a whirlwind experience. The diagnosis in late April seems like a long time ago, but the surgery and recovery seem like yesterday. As my screen name implies, I always seek the positive…
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Re-occurrence
I am getting set for a biopsy to determine if my renal cell cancer has matasisized. The doctors are 90 percent sure that it is back. They found anodule on my right lung in August and they just did a scan the week of Christmas eve to see if the nodule grew, not only did it grow but five more grew as well. They have to have…
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Home!
i have previously posted about my diagnosis. Short story, incidental diagnosis after having acute renal failure following campylobacter infection from rare duck. Initial diagnosis was mid-August. Working through the system I selected a surgeon at a major hospital in North Texas. CT scan showed a 6cm tumor plan was to do an…
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radioembolizaiton
I have had tests (MRI, Ultrasound, & biopsy) to proceed with radioembolization for liver mets. My provider is currently running it by the insurance co. (BCBS) for approval. Has anyone else had to deal with insurance companies for approval with this proceedure? If so, was it approved & how long did the process take? It…
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Pfizer co-pay assistance
I recently found out that Pfizer has a program called "Co-Pay One". It offers some very real savings as to your out-of-pocket costs for certain Pfizer products. Included is Sutent. Maybe this is common knowledge among kidney cancer circles. But, I hadn't realized it and wouldn't have known about it except for my…
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I'm just a little confused
On Nov 1, I had my first ever hematuria event. A ct scan 2 days later revealed a mass on my right kidney and several involved lymph nodes in my medistinal and collar bone area. On Dec 1 2014 I had a full radical nephrectomy and a 7 cm tumor along with my right kidney were removed. Multiple local lymph nodes were also…
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Hearing loss associated with renal problems
My work colleague politely inquired whether I was having hearing issues, because he noticed I turn my head and cup my ear when he speaks to me. Three years ago, I had a 9 centimeter cancerous tumor and my left kidney removed. I have never had hearing problems in the past and neither has anyone else in my family, so I was…
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Update
my husband had th biopsy on the 2d and we got results yesterday. The area in the sacrum that first showed up on the initial MRI in the staging and diagnosis but which no one alerted, was renal cancer. Based on the initial size and the current size (18 months) shows it to be very slow growing. the smaller spot on the ilium…
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Saying " Thank you!"
Hello everyone! I'm new on these board, not a patient myself, but a caregiver. English is not my native language, so apologies for possible mistakes. I'd like to say thank you all very-very much for this forum, for good advise, positivity and support you give to all newbies here. Here's our family's story - my fiancée was…
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Our Christmas Gift
As most of you know, my husband, John (oneputt), has been on the nivolumab/votrient trial at Hopkins for over two years now. During the first year of the trial, he basically achieved 56% tumor reduction, followed by a year plus of stability. The trial requires CT scans every 12 weeks which are read by Hopkins and then by…
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Hip and lower back pain
Hi all, I'm having lower back pain that was tought to be osteoarthretisis before being diagnosed for my RCC. Nothing showed up on the bone scan in august tough. I am now dealing with this lower back pain everyday and night(worse at night), I am also having hips pain since a couple of week and i cannot cross my legs without…
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Muscle weakness
It has now been three weeks since my operation, and I am experiencing quite a bit of fatigue, and my arms and legs feel like there are weights strapped to them. Very sluggist. I also noticed today that my right arm was tingling...from my foreare through my hand. Additionally I have been rather dizzy. I do know that I have…
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Stuart Scott
I never saw his speech this summer as I spent most of the summer hospitalized, but saw Stuart passed away today and viewed his speech. I love what he said. "When you die, it does not mean that you lose to cancer. You beat cancer by how you live, while you live and the manner in which you live." - Stuart Scott RIP…
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Votrient to give away
I was recently tried on Votrient for metastatic leiomyosarcoma but had to stop it because it was not working. My mail order pharmacy sent my monthly supply one day after my physician discontinued the meds. If I return the medication, they will just dispose of it. That would be almost $10,000 wasted. I never opened the…
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Just received my pathology report
I just received the pathology report electronically, and the tumor ended up being 3cmX4cmX5cm. They called the tumor RENAL CELL CARCINOMA, CLEAR CELL (CONVENTIONAL) TYPE WITH DEGENERATIVE CHANGES AND METAPLASTIC BONE FORMATION (sorry for the all caps...I cut and pasted it from the report). I don't know what degenerative…
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Pathology report
It appears my tumor was much larger than the original 5.5 cm they saw on the CT scan. It measures 12.5 cm x 7 cm x 6 cm. It was 50% necrotic. Given its size and the happy news that it appears to have been confined to the kidney, it was Fuhrman grade 2, clear cell renal cell carcinoma. My surgeon was sick today, so, I saw…
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Votrient - side effects/ long term use?
I have had renal cell for the last 8 years, recurrence occured in the remaining kidney, pancreas and lung 5 years ago but as I was well and considered stable, with mm growth at each 6 monthly scan I had no treatment.Now my last scans show considerable growth and I have fluid in the lung. My oncologist has suggested…