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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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Happy NED year everyone
May the new Year bring good health and Ned scans to all of you here. May 2015 be the year searchers will be finding THE cure. A good year to you, your family and friends!! Dave
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internal hernia caused by nephrectomy
I was wondering if anybody else developed an internal hernia after HAL nephectomy. Four weeks after my kidney surgery, I had to have a laparotomy for a bowel resection because of a closed loop obstruction that had strangulated. Over five feet of necrotic small intestine was removed. It nearly killed me. From my…
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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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Returning to work. Is there a common experience?
Is there any kind of common thread or expectation about returning to work? I am a High School History teacher, teaching everything from Ancient World to Ap classes in European and American studies as well as a bit of Philosophy. I have a reputation of working well with dificult students and so am rewarded by being given…
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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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Axitinib/Inlyta after clinical trial azd6094 failure
All, Hope this finds you all well! I wanted to give an update on my clinical trial for AZD6094 through Dana Farber Cancer Center. I met with my Dr and clinical team on Tuesday prior to Christmas and was given terrible news that the clinical trial for my Papillary Renal Cell Carcinoma was not working for me and that my mets…
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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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Being proactive and then some
when my husband was dx in July, 2013, it was through the MRI; it noted lesions at the T11, L2 and an area in the sacrum at S1 and S2 and of course, the mass in his right kidney as he went through tests to stage the cancer, he had a Pet Scan which again noted those areas followed by CT scans. He was treated for the T11 and…
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Would like your opinion
In one of the topics posted earlier, Sarah had mentioned that she re-reads her husband's pathology report often. So...I read mine again. There were some terms on there that I wasn't sure about so I googled them. Lymphovascular Invasion - present. From what I read, that is indicative of a higher chance of recurrence. The…
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Pain from surgery
I had a left partial Nephrectomy on Dec. 19th 2014, It was open cut, and today is 1 week post surgery. I am in so much pain I can't believe it. I feel like there is a vice around my chest squeezing and when I move much at all the vice tightens until I can hardly breath. I can only walk from the bed to the toilet before I…
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Discussion Board and Chat Spam
Hello everyone, Thank you to those who've alerted us to the spamming from earlier today and we sincerely apologize for the inconvenience. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of discussion board and chat spamming. If you…
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Moving on....
Friends - it's been a good run. I have learned much from you and felt your courage, faith and anguish. Thank you ACS for this forum as well. I found a new "home" wherein to discuss RCC which offers more privacy and active moderation than can be found here. [Content removed by CSN Support Team]. Best wishes to all you…
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My Christmas Wish
My wish for Christmas is for our medical system to do a better job of early detection in regards to cancer. I feel incredibly lucky that my cancer was caught incidentally. But a majority of cases aren't found until the cancer has progressed and either caused serious medical issues or metastasized. And I'm sorry, but that's…
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Stomach ache
Its been 3 months since my radical nephrectomy and I'm always having stomach ache specially in the morning....My stomach is always full of air and the pain seems to be coming from the intestine...then after farting a lot, followed by a bowel movement, it goes away slowly....but it always happen every morning......anybody…
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Anyone else deal with this
I was diagnosed with stage 1 RCC in Jov of last year. I had partial nephrectomy and successful removal of mass. I have had the hardest time dealing with having cancer mentally. I havent dealt with it nor know where to start
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Creatinine levels
hi all first, happy holidays to all. may the spiritual forces be with you all as you go through this journey. i have been in pretty good shape since my full nephrectomy in June...life has thrown another curve ball at me but that is another pint of beer (only one pint though, gotta to treat the remaining kidney with kid…
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Nivolumab (Opdivo) from BMS has just been approved for Melanoma
What a wonderful Christmas present for all of us! http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm427716.htm
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MERRY CHRISTMAS EVERY ONE!!!
I just wanted to take a moment to wish all of my extended family a ....Wonderfully warm & heartfelt Christmas. My wish for all of us is a Happy New Year filled with the promise of nothing but good things to come:) HAPPY CHRISTMAS!! Djinnie x
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How soon after surgery should we expect to see oncologist?
I was wondering how soon after surgery and original pathology report should one expect to see an oncologist? My husband met with his urologist the Monday after having his kidney removed on the previous Wedenesday. He told us he would send over the pathology report to the oncologist and the oncologist would contact us when…
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Scans and appointment
after a week of anxiety, my husband's bone scan, chest and abdominal scans are clear; next appointment in 4 months his oncologist is optimistic but, of course, cautious since we are dealing with renal cancer. But, he is stage 4, grade 2 with no evidence of visible disease. Sarah
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Has anyone had this happen after surgery
I had my open partial Monday, and i experienced a first last evening and twice since that has me baffled. I passed gas finally, which apparently is a big deal after surgery, but then i was urinating and at the end passed gas out of my urethra. It was the strangest thing. I then read about something called a fitsura. I…
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First post-op scan ...no cancer, but a new issue
Hello all, I had my 2.2cm tumor removed via open partial Nephrectomy back at the beginning of March. Clear cell, stage 1, grade 2, clear margins etc. Because of my relatively young age for kidney cancer, I am going with 9 months between scans for the first few years rather than 6. I got my results yesterday (24 hour…
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Good News
I had a chest cat scan this month that is still clear and has been since December 2011. I had been diagnosed with stage IV kidney cancer with mets to the lungs in april 2011. I have been on votrient since July 2011 and oncologist is now stopping the votrient and will repeat chest scan in 6 months. He is not totally…
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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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Husband Diagnosis of pT3a with Sarcomatoid components - need help
My husband was diagnosed with Kidney Cancer on December 10, 2014 at the age of 39. He is not a smoker and has no family history. His cancer was found after a CT scan that was looking for kidney stones. The mass was 10cm. The urologist performed a radical nephrectomy and said everything looked good with clear margins. There…
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If you can spare a prayer today
Today is my first after surgery appt. with the doctor. If you can spare a prayer for me, I would appreciate it. Will be getting the pathology report today and am praying it is stage 1 with no renal artery involvement. A bit apprehensive. On the bright side, I am doing a bit better in the pain department. I was able to get…
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I had my left kidney taken out Monday but I swear I feel pain in that spot now. Have I lost my marbl
Is this pain in my head? It's not bad but distracting and worse at night.
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It is finished
I am happy to say that the surgery is over. I am lying here in bed...in pain... but happy to be rid of that tumor. It was a bit bigger than they thought...almost 5 CM. It was also oblong shaped, and had grown into the ventricle...whatever that means. But, it was encaplulated, and they got the thing out succssfully and were…
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Some surprising good news from blood work today!
I have been in a pretty bad way recently so I was not expecting my blood work to be in good shape. It was a big surprise to find everything from my Bilirubine, Creatinine and Liver Enzymes all to be in the normal range!!! Also my Oncologist has been giving me a hard time for ages in my refusing to take medication for my…