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Kidney Cancer Association Newsletter
In the event some of you do not receive this. http://e2.ma/message/6mfwe/yobsre
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Creatinine Level
My blood came back last week with high Creatinine levels while on Sutent 50 mg and Nivolumab. is 1.6 really high? They gave me 2 liters of fluid by IV and wanted to make sure I drink at least 2.5 liters of water every day. anyone have high levels and have them come back down?
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Improvement After Two Cycles of Sutent
Mike had his first set of scans after two cycles of sutent. We were hoping for at least stable but got even better - improvement! No new mets and reduction and healing in bone met, and improvement in all others. Now we can breathe again for a couple of months. Hopefully sutent will continue to cause improvement. Thank you…
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Good luck Pauley13
Hi Crystal, Wanted to wish you all the best with your op on Monday. We will all be thinking of you:) you will do just fine!! Just think about getting it overwith, all this worry will be behind you at last. You have a great holiday to look forward to, maybe a bit of pain, but stress free!! what could be better!! Djinnie x
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im back :-)
hi all well i am back and i look like a big fat italian grape!!! i missed you all xxxxxxx eims
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Need help coping - post surgery
My first post, so I'm excited to join the forum! I found out that I had a 10lb cancerous tumor on my left kidney back in February. It was completely unexpected and I had no prior symptoms. Blood in my Urine led me to get a CT Scan which revealed the tumor. 2 days later I was in a 5-hour surgery and suddenly it was all…
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No More Afinitor for now??? Back on 7.5 mg of Afinitor since last week
My husband started Afinitor 12 days ago after Votrient stopped working for him after 5 1/2 months. Well he is only 12 days in and he has a bad rash, severe back pain and his face and eyes are swollen and puffy. His Renal Oncologist took him off of Afinitor until at least next week when he goes back to Duke. I am curious if…
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So...what to expect??
So partial is less than a week away, with a million different thoughts in my head...hoping you guys can help me out with what will really happen. Your own stories about pre-op to post-op...when I wake up will i have tubes comeing out of me (i know i will have urinary cath), will i be on oxygen, will i be in alot of pain?…
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Biopsy on Wed. June 26.
Hello everyone. Its been a little bit since I last posted but I still check the site almost daily. I had a kidney mass of 2cm detected in March and suspected to be RCC and its been a roller since. I recently went to University of PA Hospital Pearlman center on June 16 and saw Dr. Guzzo. He scheduled me for surgery on July…
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Possible Mets to Adrenal????
Hey guys! Hope everyone is well. Background: radical right neph, incuding adrenal and lymph nodes. surgery 3/28/12, stage 3, grade 4 Clear Cell, 49 year old fèmale. Put on Votrient-placebo study a year ago. CT scans have been ok. In 10/12, Ct showed new spot on remaining left adrenal gland. 2/13 showed shrinkage in nodule…
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Sutent cycle
Nick is on a 4 week on, 2 week off cycle on Sutent. But some people seem to be on a 2 week on, 1 week off cycle. And others, like Nano, are doing 4 weeks on and 1 week off - what an amazing man! Is there any reason for this? And is there any medical difference between these different cycles? Is the 4/2 cycle more effective…
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Fatigue, stomach pain ?
I am almost 6 weeks postoperative. Partial via Divinci robot. I have a desk job, so have been back to work on and off for several weeks. Seems like around 2pm I sorta "run out of gas" and usually head home for some bed rest. I do keep reading the it was major surgery, to give it time, etc. In addition to walking x2 a day,…
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Appt with surgeon tomorrow....
My appt with my doctor after all the ct scans, ultrasounds, and biopsy....what questions should i ask?? i know i will forget when i walk through the doors so i am trying to put together something tonight...trying to prepare for everything...thanks in advance.
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First Pet Scan Negative!!!!
After day of worry, had my 1st PET scan today as well as a chest CT. both negative, no spreading. My case still goes before Tumor Board tomorrow and one of the surgeons is the head of the cancers centers all arond the county, im very relieved and confident right...on a "high" for first time in awhile. next scan not for 3…
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Tumor Board ?
My oncologist is presenting my case to a Tumor Board on Thursday. I believe he just wants to have my case looked at by other professionals and that this is a good thing. I am 5 weeks postoperative, with Grade 4 (with small % sarcomitoid aspect) but only a Stage 1. The surgeon said he "got it all" and it was clear cell.…
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I have to ask . . .
I am now four weeks post surgery. The first three were great, all things considered. I've been judicious about exercise . water, meds, staying in touch, and working on getting myself back together. For the past 5 days, I feel as though I have run into a depression wall. My wife tells me she misses my smile and my jovial…
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I survived my first chemo treatment!
I survived my first chemo treatment.....but..... Yesterday was a comedy of errors. I was told to be at the Kellogg Cancer Center by 8:45AM for blood workup and then chemo treatment to begin at 9:00 which is my standing appointment on every Tuesday. My husband and I arrived at 8:30 because I can't stand being late. After…
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Incision Area
Hi Everybody: My question is just a curious one. It has been 7 weeks since my laproscopic radical nephrectomy. I am a small person...109lbs, yet my incision from naval down is still very puffy which prevents me from wearing my regular clothes. Does any one know if this will eventually go away, must I exercise that area…
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Further scan coming up
I am having a CT scan tomorrow and will see oncologist for results on Friday (Australian time). Getting a little (lot) nervous than any previous scan I have had due to last scan in March revealing metastatic disease and getting scared there will be more little nasties rearing their ugly heads. Just putting it out there for…
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newbie caretaker needing some guidance
Hey all, first off I want to thank all of you that have posted your stories on this board. It has really helped me the past few weeks. My mom was diagnosed with breast cancerin 1999, she had a double masectomy along with a tranflap. Those were the hardest times for my family seeing how I was only 9 at the time. This year…
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Oncology?
Hi all, I had an incidental finding of a complex mass on my right kidney, "likely RCC", in early May, while working in OH. I immediately flew home to Oklahoma thinking I would see an oncologist but was instead advised to see a urologist. I'm 2 weeks post-op following a radical nephrectomy. A partial was not an option given…
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Well..... looks like I'm in for the long haul
Went to see my oncologist yesterday and the results from my MRI showed the RCC has spread to my liver. She was seeing tumor experts at a meeting today and they will discuss what treatment I should start with. Her first choice is the IV infusion Temsirolimus since my blood workup suggests this would be the most aggressive…
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Collecting duct
Did anyone have their tumor in or halfway in the collecting duct? There really isn't any research out there on it...
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Update - Kidney Cancer Treatments
I had my PET/CT Scan with contrast done last Friday. It was a really bad day, whatever could have gone wrong went wrong. We arrived at Georgetown Hospital at 9:20 am and left there at 4:40 pm. The best part of the day was that all the test were finally able to be done. My last scan was in March with no defintative cancer…
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Got my results
Before Tuesday we called it my "oddly shaped tennis ball" Now we call it my "Cancer ball"... I got my MRI results Tuesday - I have cancer. It was a roller coaster of Bad news/Good news... Bad news: I have cancer. Good News: They are pretty sure it is contained in my left kidney. Bad news: Its in the collecting ducts of the…
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New member
In March I went to the dr. because of urinary tract infection. The dr. suggested seeing a urologist because he said uti's were uncommon in men. I agreed to this and the urologist done a cystoscopy and ultra sound. The ultra sound revealed a 4cm. growth on the right kidney so a ct scan was ordered to further evaluate. After…
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Pet Scan Anxiety!
New member. 66 year old, male. Had partial via robotic surgery on May 13, 2013, which removed 4.5 tumor. Pathology report says Grade 4, Stage 1 sarcomatoid RCC. Father died of same disease, but mine was discovered early because of a freak fall in the woods. Have seen oncologist and he ordered Pet/chest CT, which is set for…
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Sarcomatoid?
My surgeon says path report showed small % of my 4.5 tumor was sarcomitoid. He referred me to oncologist who says, like surgeon, that he thinks they "got it all" but has ordered Pet/CT scan for Wednesday 6/19. Oncologist says the sarcomitoid aspemothered my tumor makes him "nervous" and that is why he ordered PET. Anyone…
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Update-Kidney Cancer Treatments
Great news evereyone, I am clear for right now!! My new visit will be in October, but right now I am 4 months closer to that 5 year mark! Thank you everyone for the prayers and words of encouragement. This is like talking to family members that know exactly what I am feeling! Feeling wonderful today! I do apologize for…
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Bye for 10 days!!!
well all i am off on hols for 10 days so i won't be on here but keep that candle burning for me!!! ill miss you but i promise i will have lots of good food and wine for all of you....you all take care of yourselves and i will see you when i get back.. eims x