-
June 12, 2012
Tomorrow [ June 12th, 2012 ] will be two years since the day I was diagnosed and was summoned to my Internist's office to discuss my CT results. I knew something wasn't right, she never asks me to come back in and discuss, always the nurse says "Everything is ok on the phone" - What a surreal & sobering afternoon that…
-
Don't let having kidney cancer hold you down...ever.
I am going to just repost my story, in it's entirety. I realize I am one of the fortunate ones that so far, am still clear since my original diagnosis and surgery. However, it certainly changed my outlook on life in general...and I decided to become something, do something, extraordinary. The moral of this story is, all of…
-
immune-systems-can-unmask-tumours-and-cure-cancer
http://news.nationalpost.com/2014/06/09/our-immune-systems-can-unmask-tumours-and-cure-cancer-experts-say-calling-immuno-oncology-the-biggest-breakthrough-in-years/
-
Pain after partial nephrectomy
I had a partial nephrectomy on Feb 26 of this year. At my follow up appt 2 weeks post op I was told per my MD that the pain I was experiencing was normal. Now three months later I have a dull, nagging pain in that kidney. Almost a heavy feeling. From time to time I experience a fast, sever stabbing type pain! Is this…
-
12 year Ultrasound
The following is my recent ultrasound report. Does anybody see anything wrong with it? RENAL SONOGRAPHY:Indication for examination: Renal Cell Carcinoma. BPH with obstruction. Comparison is made with an MIU study dated 08/15/2013 revealing no significsnt interval change. The left kidney currently measures 11.8x6.1x8.4cm. I…
-
New Tumour . Oh ***bother!
Hi all. Just got back from Mr Phreds Radiation oncology appt . Sadly more bad news. New tumour 4.3 by 4.3 by 4.3cm only 2 months after radical nephrectomy.Growing next to staples. Have to wait another week to see if more surgery is possible or maybe sutent. So sad.
-
I'm scared
I recently had an MRI that showed a 15mm partially exophytic enhancing lesion on my right kidney that is suspicious for neoplasm. This lesion is not new but as always been classified as a simple cyst and was only 7-8mm. Since October it has gone from 8mm to 10mm and since May has gone from 10 to 15 mm. I have increasing…
-
Once Around
This eve is our local Relay For Life event. I will walk a lap in honor of all my kidney peeps. The sun is out and I'll be surrounded by family - takes a lot of the sting out of this purple shirt!
-
Good news comes my way, mostly.
Turns out this second batch of antibiotics has greatly quieted my cough and the dizzyness is starting to subside. So looks like my GP was right in suspecting it was a simple yet stubborn sinus infection causing my grief. Also, had my chest ct and it was all clear, lungs were unremarkable. Also finally got my first…
-
It Never Gets Easier!
Hi Everyone, Had my CAT Scan and Head MRI last Friday and I am doing just great. I get my results on Monday, June 2. I know I have been feeling really well and everything has been going really great for my husband and I. We were at Ocean City for the car show a couple of weeks ago, my husband finally got to take his truck…
-
No progression and more IL-2 to come
Finished week two of IL-2 March 15 and subsequent scans six and twelve weeks out revealed "stable disease" as my doctors put it. And I haven't even been on a farm <rimshot>. My five lung mets (four in the left lung) are still about 6 mm to 15 mm. When they asked if I was game for more IL-2 I said yes as it's really the…
-
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…