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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…
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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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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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Will be 3 weeks on Monday
This coming Monday (January 5) will mark 3 weeks since I had my open partial nephrectomy. This is just an update, as I haven't posted anything for a while. I came home the Thursday after surgery, and was in quite a bit of pain as expected. I slept in the recliner for three or four nights, but after that was able to move…
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Which is a better or safer open or Lap ... Here IS THE UPDATE AFTERMATH!!!!!!!!!!!! HELP SOMEONE P
Hello all, I go for a partial nep surgery next week and wanted to know if anyone can give me some insight on which surgery is safer. The open surgery or the Lap. Hello all, an official club member... But I have a question. I had surgery Dec. 19th and sad to say I'm still in the Hospital 9 days later with a servere urine…
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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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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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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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Votrient dose adjusted
I started Votrient six weeks ago with 400 mg the first week, 600 the second week and then 800. Had a lot of problems with my mouth so the doc went back to 400 mg for a week and then 600 mg. That meant I could eat all the Thanksgiving dishes--which was great since I made most of them. Got my six week checkup and he has me…
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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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Survivors Remorse
I know this subject has come up many times before, and probably will again and again. I hate it. I hate wondering why I've had cancer twice and was blessed to not have a recurrence. Even this summer, when I was so close to dying and yet I survived. So many don't, as we know first hand, both here and in our personal lives.…
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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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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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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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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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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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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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Symptoms or lack of symptoms
I have read that blood in the urine is one of the main symptoms of a kidney tumor. I am happy to say that this far I have not had any visible blood in the urine...perhaps some microscopic blood, but none that I could see. Again, I am 41 and the tumor is 4.5 cm. The symptoms I do have are full flank, side, and back…
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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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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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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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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…