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Sutent 2 weeks on 1 week off
Hi, I haven't been on this site since I started my chemo in April. Was on 50 mg Sutent and had problems with my thyroid. Put me down to 25 mgs of Sutent and still have problems with my thyroid. I am of thyroids meds but they can't seem to get it adjusted My nubers go back and forth from 1 to 25. It was suggested that I do…
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Port or intravenously
I am beginning inumatherpy infusions for my renal cancer. The kidney has been removed but tumors were found in my lungs as well. I love to use my hot tub. Its so cold outside. My oncologist says no with a port. My infusions are once every two weeks. Anyone hear of being allowed to us the hot tub with a port?
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Rebirth Day
My birthday was two days ago. My re-birthday is today - the one year anniversary since my nephrectomy. There were some complications (a clipped artery), and a four-day stint in ICU. I have extra scars (from the laproscopic start and the opening me up to fix my artery finish). There's what I call my 'navel shelf'...which a…
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Been a while..
Sorry to see so much lost content! I know it's been a while since I posted... Last scans show 3 spots in my lungs. Two in right, one in left. Onc scheduled repeat scans and one "spot" resolved itself?? They, however, want to biopsy the one in the left lung. I have been spending a lot of my time on smart patients but I…
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Need advice... Doctor recommend yearly scan
I am 40 year old DX in May 2018 with a tumor4.6 cm, well contained, no spread, stage 1b tumor, grade 4. Partial nephrectomy, Clear cell with Sarcomatoid and Necrosis features. I am currently see Dr.Randall at UCSD- Koman Family Outpatient Pavilion. August 2018, my 3 month post surgery CT scan is NED. Today I went to see my…
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Exercise Post Surgery
I am about 2.5 months post surgery and have been feeling great. I am wanting to begin working out and exercising again as I just had a baby before my surgery. I recently tried to do some abdominal exercises and noticed that my incisions are actually hurting from the inside. Is this normal? And if so, should I not be…
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Confused about post Surgery Follow-ups
So I know things can be handled differently dependent on your treatment center and your individual doctor. I am being treated at Memorial Sloan Kettering and I have a urological cancer surgeon caring for me. In our meeting post-surgery he suggested we would put together a scan schedule for 5 years, a combination of…
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I hate it
I hate when we lose people from here. It's funny how we are really just a bunch of strangers with an odd common thread. But, it's funny what a weird feeling it gives me when we lose someone. Fox yes, but others as well. It's never easy. I know we will lose more, this is not a winning game. I suspect one day it will be me.…
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NED
I just visited my oncologist and he told me that there no evidence of disease (NED) I will visit him again in 6 months... Feeling very relieved.
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Travel
So I had a trip booked for 2/15 to go to Puerto Rico with my family to visit friends that we haven’t see. Since the hurricane. Little did I know when I booked that I’d be having a partial nephrectomy on 1/15. I stand to lose a good amount of money if I cancel, which was what I intended to do until my doc reassured me that…
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EGFR
Hey all, I was just wondering what yours (and what's considered normal) EGFR and Creatinine levels following a radical nephrectomy? Thank you!
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No evidence of metastatic disease vs NED ??
I got the call and the nurse said that my scans were back and that there was No Evidence of Metastatic disease. She didnt say No evidence of disease. I trying to understand the difference. Should I be concerned. I didnt think to ask her the difference. I had a partial hysterctomy in 2016 because of heavy bleeding. I still…
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New here saying hi
Hello, New here and wanted to say hello. My story is in my "About Me" page under the expressions tab, shorter version is this: 12/2016 discovered cyst on left kidney 30x22x23 cm, 01/2017 hand assisted laproscopic radical nephrectomy Pathology shows positive for HLRCC and tumor is of the Tubulocystic variety. Cancer free…
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Still fighting
Sorry for not posting for a bit. I’m still fighting back against this beast. I’ve stayed out of the hospital so that is good. I’m still on Cabo - been on the higher dose (60 mg) for about a month. The SEs are unpleasant but I’ve been toughing it out. Had scans today and I have a date with my onc at 8am tomorrow. Not sure…
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I'm here
thanks all. It is too hard to believe how sick and weak I am. Just consider me quiet for awhile as I continue to work on my rehab. I will never be the same but as long as I am safe, I am happy. Believe in yourself and work hard. New treatments are effective and tolerable. This allows concentration on training recoverable…
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Lost Content
this is terrible all that lost info messages for Abunai and his wife For Fox the new people who have lost all their details very sad
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Question about possible mets
Hey Guys, I was diagnosed with RCC back in November and the pathology report and imaging suggests it was contained and did not spread. Back in November I also had a CT then a follow MRI of my brain as I was having some symptoms that concerned me. The CT found "concern for subcentimeter right frontal and right cerebellar…
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I am anxioous
I had partial neprektomi mei 2017 rcc 3,6 cm on right kidney,first control 3 month atter surgeon was NED( september 2017). Second control ( february 2018), 9 month after sorgeon (ct scan thorax and abdoment) was NED, but discovered 3 lung nodul, as one 5 mm was benign, 3 mm beinigm too, and one again 2 mm tiny nodul as…
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Travel
So I had a trip booked for 2/15 to go to Puerto Rico with my family to visit friends that we haven’t see. Since the hurricane. Little did I know when I booked that I’d be having a partial nephrectomy on 1/15. I stand to lose a good amount of money if I cancel, which was what I intended to do until my doc reassured me that…
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Drain issue
im two weeks and three days post partial nephrectomy and I’m still draining a lot of fluid, anywhere from 40-65ml and based on tests of the fluid I am leaking urine. It seems like a long time after surgery and a little internet research tells me this shouldn’t be happening. My surgeon said it could be “weeks” but will…
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Ipilumimab
My son alerted me yesterday to the discoveries of James Allison and his Nobel Prize Award. Google his name for more information. i have ordered the book The Breakthrough written by Charles Graeber. i have learned that ipilimumab is being used to treat melanoma and is in clinical trial to treat other forms of cancer…
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no one around
It does not seem many around on the bladder discussion board. thats a shame, there are so many with bladder cancer. Thank you all for allowing me to on here to panic and to vent. I wish you all the best. I will be on the breast cancer board because that is ongoing with me and I will be at smartpatients to get help with my…
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Home
Just got back from the hospital. Robotic, small tumor and surrounding area successfully removed. Had to stay an extra day because of severe pain. I had no idea they would make six incisions - feels like I swallowed and elephant and its twin is sitting on top of me. My left side of my abdomen is super swollen too. Thank you…
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CT scan results
Any thoughts? EXAM: CT CHEST ABDOMEN AND PELVIS. INDICATION: Malignant neoplasm of left kidney. COMPARISON: CT chest abdomen pelvis 8/8/2018. CT CHEST: LUNGS AND AIRWAYS: Airways are patent. Noncalcified pulmonary nodules as follows measured on series 205 and compared to 82,018 CT chest: 2 mm middle lobe image 249 stable,…
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Catching Up
I haven't been on in months. I was logging in today to try and catch up. So sad to find out I can't catch up. I don't know what all happened since I was on. Is there any way somebody who has been keeping up can post a summary or something? There are so many people I was wanting to check on that I'm concerned with and now I…
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Hardo781 aka Donna
Hello, noticed that hardo781 (Donna) wasn't around for a long time, since summer. Hope she is doing allright... A.
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How to exercise after a Neph.
Here is one of my BO (before outage) posts. Begin by standing at a comfortable surface where you have plenty of room at each side. With a 5lb. potato bag in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute and then relax. Each day you will find that…
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And another Ned visit
Thank you all for your support and good thoughts and wishes. I had a visit from Uncle Ned. Love to all of you!
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Complex Kidney Cyst
I was recently diagnosed with a complex kidney cyst. It is located in the lateral region and is showing minimal vascularity. Size is 2.3 cm. The cyst is also presenting with interal septation - although the report does not specify the extent of the septation. There is no calculus or hydronephrosis. I go for an MRI this…
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36 w/renal mass & liver lesions - thoughts & advice appreciated
Hi everyone. I feel like I have no one to turn to who understands what I am going through. I have a small solid mass on my right kidney that was discovered incidentally on a CT scan in March 2017. I had an MRI and the radiologist said it could represent a renal oncocytoma, metanephric adenoma or renal cell carcinoma and…