-
Good news as long as it holds true
After just having a single follow-up ct scan 3 months after my partial nephrecetomy, my urologist today told me I was certainly cured and that any more scans were completely optional. He did schedule another one for next June but told me it would be quite ok to cancel it if I still felt ok at that time. And so with that I…
-
food and other essentials
I am reading and learning a lot. Here are items on my list to buy this weekend for my husband that I wanted to share with other newbies. Please if anyone can suggest quick/easy grab & go items. I'm lacking in things he can pack for lunch. Plus anything else yall swear by that I can get. Most of these came from MD anderson…
-
New Tumour was not a tumour
Just got back from hospital appointment . Phred is now NED. They had mistaken tail of his pancreas for a tumour in previous scan. Thankyou for your prayers and good wishes. They must have worked! Hugs Melissa
-
Life Saved by Ineffective Primary Care Physician
After seeing my primary care physician several times over a 6 to 8 month period for a runnig related injury I convinced him to do some tests. He was content to just keep telling me to take time off from running. I thought I needed an MRI of my pelvic area to see what was going on but he suggested getting a CT Scan. Good…
-
Staying positive is becoming a feat in itself!
Had my scans today, I am somewhat deflated at the results. The tumours have grown since the last scan, the lymph nodes having undergone a marked change; in that they have grown substantially. OMG! this is so tough, it is becoming harder to remain in a positive frame of mind. The good news is that my liver has recovered a…
-
Wife of a cancer survivor
Just checking in to say "HI" I just updated a little of my "about me". Please read and provide feedback. I'm confused and learning. I will know more tomorrow.
-
Blood Pressure
I have been on Votrient for 16 months. Hair went white BP went up. Now hair is going back to normal/gray and no longer need BP medication. Are these the sighns that Votrient isn't working anymore. Scan in August.....
-
Patient Forum at City of Hope
Hello, Just wanted to share with anyone who might be interested. Our doctor, Dr. Pal at City of Hope, is doing a patient forum to discuss ASCO data from clinical trials and emerging therapies. I don't know who all is in Southern California, but this will likely be a worthy event to attend. Here is the info: Date/Time:…
-
Sometimes
sometimes I wonder how so many doctors, trained for years, can be so damned incompetent and irresponsible when dealing with this disease. if we had stayed with my husband's first docs, he would probably be dead. despite pain in the hip that was not relieved and got worst, despite an increase in creatinine, some hyper…
-
Update since DX in December
Hello all, Dave was diagnosed with stage IV clear RCC on December 31, 2013. Since then he started Sutent which wasn't working as the cancer progressed into his bones. He was then in and out of the hospital the entire month of May and the beginning of June for infections, severe constipation and most disheartening, extreme…
-
Colonoscopy Prep after Partial Nephrectomy
I’m scheduled for a colonoscopy next week and I’m wondering if one type of prep is better for the kidney than another. I had a partial nephrectomy in March and I am really not looking forward to having to take in all those harsh chemicals with the prep. I did Moviprep last time and the PA mentioned there is also Prepopik…
-
38yrs found complex mass
Hi I was taken in hospital and found I had a cyst on left kidney so was drained, was in for 11 days antibiotic ect. Went back to see specialist to be told large complex cyst upper pole left kidney plus cyst and stone which they said is a stick not elephant lol but said if need removed will be open surgery due to being on…
-
Suggestions, advice?
All, I am hoping to get help and advise. I had a full nephrectomy on December 3, I just went back to have my 6 month CT scan and was found to have several enlarged lymph nodes (5 largest was 4 cm). I am getting very grim news and have been advised for a treatment plan, but every plan does not involve removal of the…
-
New cancer diagnosis
Hi All, It's been awhile since I've posted here. My year has had a lot of changes for me. I had my usual CT scan back in early March. I had an "all clear" from my oncologist (I had stage 2, grade 3 cRCC back in 2010, with a 9cm tumor and left kidney removed). Two days after my appointment, he called me to tell me his…
-
Eating better with one kidney
My husband is a TROOPER. He has modified his diet in so many spectacular ways. But I'm struggling with the sodium aspect of things. It seems almost impossible to achieve the proper levels for 1 kidney. Does anyone have any tips on this? His creatinine level post surgery was 1.5 and remained the same 7 months after his…
-
just a curious question - advice
Went for my 3 month post-op a couple weeks ago. Blood tests came back clean and Dr. said all looked great and that he'd see me again in Sept. for my 6 month saying that I would get a chest x-ray then as well. When I asked about a CT he said he didn't see a need until my 1 year since everything came back clear and that they…
-
Had my first follow-up abdominal scan...
And now I'm kind of uncertain of what happens now. I literally just went had my ct done, and when it was done they told me nothing. Not when to schedule the next scan, when to call to get results or when they would call if that's what they are going to do. Never saw the urologist either. Only things they asked me was if I…
-
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…