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I will survive
Hi all, thought I'd check in, now that I'm pretty sure I'm gonna live. Sound melodramatic, maybe, but boy what a doozie this has been! I've been recuperating from the excision of Rosemary's baby, aka a dihiscence, and lets just say, if I live to be a hundred may I never go thru that surgery again!. It's brutal. I've been…
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Others w/ Papillary Renal Cell Carcinoma Grade ?
All, I have grade 3 Papillary Renal Cell Carcinoma that has spread to my lymph nodes. I posted earlier (the other day) about my situation and I am just looking for others with similar situations, suggestions, advice, etc. I am following up with UNC Cancer Center on 6-27 and have an appointment tomorrow with a competing…
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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…
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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.
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Ever get a song in your head?
and you can't get it out? This weekend I had another experience that we have all had. Some good intentioned person was asking me how I'm doing. During our conversation they uttered that incredibly stupid statement, "We all could die any minute. We could get hit by a bus today. Or maybe have a heart attack and die. We are…
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Questions from a nervous Mellie- Updated
Hi guys my name is Melonie and I came across this website while googling some medical issues a I am having right now. I've been reading the past few weeks and you all have been through so much. I haven't even had a diagnosis yet but I have some questions I thought maybe someone could help me with. Last August I went to my…
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2 months between diagnosis and surgery...too long?
Hi all - My back doctor found a 3.9cm mass on my right kidney and the CT Scan suggested it was something to look into. Received 2 very different opinions from the urologists - one said laparoscopic and the other said it could only be done open. So I got a 3rd opinion and am going with the laparoscopic approach but now the…
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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…
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Changing from votrient to sutent
Hi, I have had a bad month. I had 3 weeks of vomitting and Diarreha. I ended up in Emergency with an electrolye imbalance and AF was put fluids. My blood test in ED were fine except for electrolyces. Had blood test a week later (fasting) them my liver function went sky high. Had my 3 Monthly CT scan on the 11/6 and…
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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…
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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…
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San Francisco area KCA Conference
Hi All..! Hope to see some of you there... Please save the date for the... 2014 Kidney Cancer Association Patient & Survivor Conference San Francisco Saturday, August 9, 2014 8:00am - 3:00pm Stanford Cancer Center 875 Blake Wilbur Drive, Palo Alto, CA 94304 Please save the date and plan to join us on August 9! Learn about…
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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…
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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…
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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…
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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
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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:…
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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…
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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/
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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…
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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…
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New Diagnosis - Meeting with Doctor and Advice Appreciated!
Hello everyone, This past Wednesday we learned that my Dad likely has stage 4 kidney cancer. My family is absolutely devastated. My Dad had absolutely no symptoms until he had some arm weakness, which we now know was caused by a 1.5cm brain tumor. On Wednesday, we had a horrible appointment with a radiation oncologist, in…
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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!
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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…
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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…
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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.
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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…
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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…
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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
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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…