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Afinitor holiday
I have been on Afinitor for two months now and up until recently I was doing pretty well with side effects. But the last week or so the fatigue had been debilitating. Just a flight of steps was making me out of breath. I have a CT scan in three weeks and first visit with my new oncologist Robert Dreicer. Called his office…
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All Done - Thanks for the Support the last 78 Days
Hi Everyone, I wanted to reach out and say thank you for the support that I received on this site as I turned here when I was diagnosed 78 days ago. What a LONG 78 days!!!! I had my surgery last Wednesday, the 24th and came home on Friday. I had a robotic partial (only removed 3% of kidney) and other than some tenderness I…
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Collecting Duct Carcinoma
My dear friend was recently diagnosed with Collecting Duct Carcinoma it has taken over most of one kidney can anyone advise on doctors in the Michigan Ohio area that have treated this condition? I do not know information as to what stage and specific information yet. I do realize that it is rare and aggressive any input on…
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is a fever side effect contagious ?
My husband had his first Zometa iv Friday. He had fever till Saturday midnight. If you have a fever side effect from Zometa do the same rules apply about being contagious for 24 hours after a fever? 1. Can I get sick from caring for him? 2. Can a teenager get sick from being around him? 3. Can a baby or infant get sick…
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inside is doc report of ultrasound. please does anyone know what any of it means? scared and nervous
hi, been in and out of the doctores office for many months. blood drawn, tests after tests. they did a 2nd ultra sound this time for my liver. but found a cyst on my kidney. liver enlarged (possibly fatty liver), and shadowing of pancreas. i'm honestly more concerned about the cyst. can i trust that they know it's most…
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Wish me luck - my procedure is tomorrow
Good evening. The day of reckoning is almost here. Wish me luck - I don't know exactly what will happen - maybe a partial, maybe total, maybe open - it really is a leap of faith to get from where I am now to moving forward and healthy. Thanks again for all of the posts - they have made a huge difference. It may be a few…
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No success at getting an appointment at Sloan Kettering
I faxed my path report to the Oncologists office. I emailed my path report as well. They said he is "reviewing" it for the last 2 weeks. Secretary said he is very selective in who he will see. I have insurance. I thought it would be good to make contact in case I need surgery it is local to family. Seems to be odd an…
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Surgeon Recommendations Please
Hello everyone, I'm relatively new here, I posted once quite some time ago and would like to thank everyone who took the time to view and/or respond to my inquiry, this has all been so confusing and depressing to me so I sort of disappeared from life for a while. A short background: A year and a half ago I suddenly…
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Carcinoma in kidney to pancreas
I was wonder if ccrc can go to your pancreas . I had my left kidney removed 7mos ago.Had set of scans done the end of March . Having pain on rightside , went to GI doctor had scan and they found a cyst in my pancreas . Have to go for an endo/eus now . They are still watching a nodule on my lung . But can carcinoma go to…
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post RCC surgery recovery assessment
This is going to sound stupid - but can someone tell me how they can assess if the partial nephrectomy site inside is healing? Is there any imaging that can show the healing? 1 1/2 month post surgery - and the follow up appointment is only in 6 months for a repeat CT after a post partial nephrectomy for a stage 3 contained…
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Thank you all
i just wanted to thank everyone for their kind words, prayers, and support. My surgery went very well and thanks to the advice I received here I was able to handle the aftermath a little easier. I returned home yesterday and my pain is managed other than a nagging cramps feeling. This place has helped me many times in the…
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Sudden drop in blood pressure
Hi everyone I just wondered if anyone here has had sudden drop in blood pressure. I am on 800mg pazopanib which I started on 6th September 2014 my BP went sky high after a couple of months and I was put on two BP meds.. The last couple of months I have not needed two of the meds as BP went to low so have only taken one of…
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My report
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Pathology report
Okay kidney angels, have received pathology report from last week surgery. Apparently as good as I was hoping. 3cm Chromophobe renal cell carcinoma t3a. Negative margins. Can anyone tell me what exactly this means. Doctor says need to keep close eye, scans every 3 months. Monitor closely. I'm a bit discouraged because Of…
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Here I go again
i have been coming here for a long long time. I have met some really great people and I just want to thank everyone for always being here because no matter how dark it may look the CSN family has always been there for me. This time tomorrow I will be wheeled into the OR for what will be my third different typefaces since…
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new
I have read this discussion board for along time and you all have been very helpful and a blessing.I had my left kidney removed Feb 2012 . 7cm tumor FG2 3/4 Rcc. 6mo.scan showed mast. both lungs. scans every 3 mo.Every scan some growth and more tumors. April 2013 IL-2 tuff treatment but very doable. No responce. I have…
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Sharp pains one week after surgery
kidney angels, I have been experiencing some very sharp and intense flank pain. It has been a week since my partial nep. It is very uncomfortable I was just taking Tylenol for pain but had to go with the prescription. I have a call into to nurse. Anybody experience this so long after surgery? Feeling very worried and a bit…
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Big Decision Looming after scans
Yesterday Had CT of chest to monitor 2 small 5mm nodules suspicious for met. RCC after L nephrectomy 7 months ago. This time my kidney function was good so they did a contrast scan. Nods have increased by about 1.5 to 2mm in approx. 3 months. OK fair enough these nods are close together in the right lower lobe of the…
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More Frequent Scanxiety
Now that I have Stage IV, even though NED at this point, I'm now on a 3-month scan schedule. I have scans a week from Monday. No symptoms to speak of, but starting to feel the anxiety of upcoming scans to start. I think I'm starting to get addicted to anxiety. Even when I hear I'm clear, it doesn't bring much relief. I…
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Stage 3 Clear Cell but No Mets - Any clinical trials around?
All I can find are Everolimus and Axitinib. Anyone else doing something different? Thanks, Ken
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Survivors Victory Lap
Tomorrow night I will be walking the Relay for Life Cancer Survivors Victory Lap. I will be holding you all close in my heart as I walk that lap...and especially for Djinnie, Foxy and Neil. Love you guys!! Hugs Jojo
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Surgery went well
Hello kidney Angels i had my laparoscopic partial surgery Monday morning. According to doctor all went well. He removed all the tumor and is very confident it has not spread to any other areas. I will get full pathology report Monday. I got home yesterday and have been pretty much sleeping the whole time. I have had quite…
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Thyroid Issues
I have been on Votrient 800mg for the past three months and recently my bloodwork has come back showing that my thyroid is not performing the way it should. My oncologist has put me on a thyroid medicine. Has anyone else had this problem and if so did it go away after you were taken off Votrient? Thanks.
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Another UPDATE on DJinnie
JoJo and I have been concerned about hearing from DJinnie. I finally got ahold of her. Sadly, she's not doing well and going into the hospital tomorrow. Seems she her muscle tone is "wasting away", cannot walk without assistance, and now cannot stop vomiting. Says she cannot even get her meds down. DANG! She also is having…
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Do you buy a "Cancer Conspiracy?"
Hey, all, Sorry for the long post, but I think it'll be worth reading and discussing: I had some thoughts that I'd like to share with you all. Some of you who belong to some of the Facebook forums may have already seen a video of a woman with metastatic breast cancer holding up cards. At the end, she proclaims that Big…
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1 year post surgery
It's been almost a year since my left kidney was removed due to RCC stage 3. Is it normal to still have a significantly decreased energy level?
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Getting ready for surgery
Okay kidney Angels, I'm going in for surgery on Monday morning. I was wondering if there are questions that my husband should ask doctor before and after surgery. I know I'll be out of it but I want to be sure and cover all the facts. I'm not scheduled for follow up until August 11(doc summer vacation I'm sure) my deepest…
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Dealing with Dr.s
For those that don’t know my story. My husband was diagnosed with Stage 4 Kidney Cancer Advanced and Aggressive. Today he is taking 1 chemo pill for the rest of his life. He is considered stable and there are similar cases like his that have done this for 10 years and are still fine. This is just a few examples of 1 day at…
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New - TCC kidney lining
I assume a short introduction is helpful. Im 40 years old. Around the end of April I had quite a bit of blood in my urine. This was the first time and it scared me. So we went to the er. They checked for infections and did an ultrasound. Both came back negative. They started throwing around bladder cancer and told me to…
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Treatment Update: Good read for new members and those on Sutent
Hello, friends. I am compelled again to start off my post with an apology for not participating more often on these boards, but as always I welcome emails through my profile, which will forward to my work email, one I am on all the time. Happy to answer any questions or help in any way possible. I like to start with a…