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Kidney Cancer

Today, I am angry....at my former Dr....
In 2006, he sent me for an ultrasound of my liver. Diagnosis was fatty liver. He never told me about anything else. I had already raised my concern about familial kidney cancer. I finally got the suite of records from him (after I fired him for missing my near heart attack). I read them last night. The report from 2006…
Nivolumab-Sutent update
Hi everyone, I have have not been posting a whole lot lately, but have been lurking quite a bit. A little history: Oct 2012 right kisney removed Feb 2013 Nivolumab-Sutent trial 2.8 cm adrenal tumor Oct 2013 stopped Sutent with only scar tissue on gland, continued Nivo infusions Jan 2013 - NED, continued Nivo infusions…
Kidney cancer support group Yale/New Haven
Just recieved a call inviting me to the monthly meeting at the Smilow Cancer hospital at Yale New Haven hospital. Every first friday of the month from 1:30-3:00 pm. I wanted to post this for everyone and anyone interested. The weather should be good so I will ride down.
Avastin PFS Experiences?
I was diagnosed with metastasis in early December last year at MD Anderson. Had a partial back in May 2013. Entered clinical trial back on Dec 13th. Entered trial using Afinitor as my first drug. Just returned from MDA and scans showed enough progression to stop Afinitor and go now with Avastin infused every 2 weeks until…
Kidney Cancer Support Group Monday June 9 in Los Angeles
I posted the details in the events/announcement section. It should appear if it's approved. In the meantime you can go to: https://secure.kidneycancer.org/np/clients/kca/event.jsp?event=3733 for details. Todd
Anything I should ask?
Have my first meeting with my surgeon/urologist since the surgery (3 month appointment). Is there anythig I should askl? They just lowered my BP meds this past Friday - an I am still feeling woozy/loopy so that's one thing I will ask about...But anything else? Should I make sure that my CT scan is 6 month? Should my…
update
Hi all update on my hip, seen 3rd doc last week and he told me there was nothing he could do for me where I have the gluteus minimus tear from the bone. All he recommends is a lot of physical therapy to strengthen muscles around hip. CT of chest i do not have results yet!! This is my place to come vent and I have a heavy…
Right Kidney Removed
I was in Vietnam in 1968 with the First Cav 8th eng. was exposed to Agent Orange. I also lost my Right Kidney in 2001. I filed a claim back then, going to file another one. I can help or someone can help me Please write Thax Dave
Scans Again
Well tommorow morning I get my CT again. I took my blood test on Monday and my Creatin was sky high 1.77 and GFR 43 Just two weeks ago my Creatin was 1.52 and GFR was 48.....The clinic called and wanted me to come in for fluids but I was 10 mins from takeoff when they called so I promised to hydrate as well as possible. I…
Feeling a bit fed up!
I had posted before about my liver enzymes being at the upper mark of level three. With it being highly toxic I had to stop the Votrient for a couple of weeks, recently starting at the lowest dose of 200mg. I was feeling hopeful; as my liver had improved slightly to accommodate the meds. I have just had my weekly blood…
SO AFRAID PLEASE HELP ABOUT MY 64yr old FATHER HELP ME PLEASE!!
Hello my name is Diana, my father Jesse who will be 64 July 29th, was in the Vietnam war and covered in agent orange, not sure if this means anything but up to now has been healthy and worked all his life. The worse thing he ever had was stitches or a toothache, I remember maybe 3 times in my life him having a touch of the…
Numb Thigh
My partial neph was on 5/8. A little less than 2 weeks post op I felt a burning sensation in my left thigh as I was getting dressed. The burning sensation happened several more times that day. And then my left thigh became numb the following day. I saw a neurologist today at Stanford Hospital to figure out what was going…
My brain is "unremarkable"....
Normally I'd be offended by that. But, in the context of looking for mets - I'll gladly take it. I had my first post-op brain scan on Wed. Picked up my results on Thurs. Why does reading comprehension go to zero when you're anxiously reading your first results? From hanging around here - I was actully scanning the page for…
It just doesn't end
So I was recovering great from my March partial neph and my follow up blood test on the 30th of April was just about perfect. Fast forward just 2 weeks and I feel run down, tired and draggy and my heart is racing from doing even very little. My internist does a blood test and my hemoglobin dropped from 12.8 two weeks prior…
mood changer
Not enough good news here. It's an old one I probably posted in the past, but it's time to share again. A scruffy old biker is sitting in Mcdonalds having lunch. He sees an old couple slowly walk in. The little old lady takes a seat next to him and the husband goes up to order some food. He returns and sits across from his…
All CSN members are invited!
It’s finally happening! We are happy to announce that as early as tonight, a new Chat application is being launched on CSN. It is NOT Java-based and it DOES support members using mobile devices. To access chat, you must be a CSN member and logged on. Once logged on, all you have to do is click chat in your left navigation…
Wisdom Needed
First of all, thank you to everyone who posts on this board. I have been a lurker on and off for a little over two years and have learned so much from all of you. I first came here when my dad was diagnosed with RCC in April of 2012. He had his kidney removed in May of 2012. I do not have the report, but I did get some…
Time for me to vent some anger and anxiety again
It seems to me, that knowing that I had cancer, however insignificant it may have been, that it would make sense to do a full complete follow up to make certain that there wasn't any other asymptomatic cancer in other parts of my body. After all the whole deal about catching kidney cancers early, before they are…
Quick Response, Please! Re: Steroids
Hi all, thoughts on steroid use for palliative care? Anyone ever been administered steroids before to alleviate pain? my husband is in the hospital for an infection in the lungs. He is at stage IV clear cell RCC. Surgery on left kidney is not an option at this point, so doctors are hoping to clear the infection and lower…
New Member- any help appreciated
I have been having pain on the right side of my abdomen with a stabbing pain that radiates to my back. I was able to see a physcian and asked if I could have a ultrasound of my entire abdomen area but the physician felt I only needed an ultrasound of my Gallbadder. So to have the ultrasound I felt I needed I had to find…
Depression and Anxiety after Cancer Diagnosis
It's been 18 months since my diagnosis and 17 months since my nephrectomy. I'm finding that I'm still having trouble with depression and anxiety. I was wondering if any long-term survivors of this damn disease could talk about how long this lasts? Does it go away? What does it take to kick it? I saw my doctor's PA today,…
Alternative treatments
Have any of you left the country for alternative, non-FDA approved treatments - Mexico, Columbia, U.K.?? Living on the US/Mexico border there are nearby options - but they all seem to be "fluff" -- ozone, hydrogen peroxide, laetrile, etc., in nature. I'm not opposed to trying such, but it would be nice to have some…
NED
2 year 6 mouth scan todays and is NED,blood test result CEA went up to 5.27 ng/ml,red blood cell low at 4.4,white blood cell low at 3.6,DR advise is not to worrier,,,,
understanding your MD
So often our doctors either don't explain things well or don't explain enough. We leave our visits dazed and confused. Scared and un-releaved.(is that a word?) Who doesn't hate this? I had a follow up today. Just blood work and a zometa infusion. No other diagnostic or prognostic indicators except a couple. First when she…
Start Votrient Again Tomorrow!
I have just had my weekly liver check, it is recovering at less than a snails pace. It seems pretty clapped out to me, with an outside possibility that it's just thinking about getting better. As there is now a very small margin my Oncologist is starting me on 200mg of Votrient tomorrow. I will continue to have my…
Follow up scans
Yesterday my husband had 2 month follow up Brain MRI and 4 month follow up Spine MRI...very happy to say that both scans came out good..no new spots in brain and swelling as compared to march MRI was very less. He had last cyber knife done in December 2013. Spot in Spine C1/C2 are was treated in last year February ( 3…
Results after Radical Nephrectomy
HI. I am a first time user. So please bare with me. Not sure if I have all the correct terms down yet! A family member has just been diagnosed with Stage T3b Grade 4 (10cm) clear cell cancer with sarcomatoid and rhabtoid features. Had RN and thrombectomy last month. They have been sent for follow up ct In 3 months. I…
Hi...
Hello everyone.... I had a cyst found by accident during an ultra sound for stones approx 4-5yrs ago. At that time it was approx 3cm and the urologist classed it as a Bosniak 2F after a C Scan He's been following via a yearly ultra sound and the latest one a week ago indicates that it has grown. The radiologist also noted…
Follow-Up Care
Hello and thank you in advance, Re: Diagnosed with stage II renal cell carcinoma in 2000, had radical nephrectomy. My physician stopped providing follow-up care for this in 2005 because he said that I had hit the five year mark and the cancer is guaranteed not to come back now. It has been two years since I have had…
NED which is good....too busy to be sick...
I got the results from my most recent scans. Once again, they were NED. I expected that, but it is good to hear it. I am now dealing with all the non-cancer things wrong with the body. And the preventive stuff I ignored while dealing with the 800 lb gorillia of metastatic sRCC. But, the met was solitary. Some of the other…

Kidney Cancer

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