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Kidney Cancer

Archives for April 2015

WOW Did Not Expect This! :(
Hi Everyone, I went back yesterday for my two week post-op check. I have to say this round has been a little easier recovery as far as the incision is concerned. My gfr improved a tiny bit up from 39 to 43. I was then told that the tumor was not able to be classified! They are getting my slides from three years ago at…
Scans Brought Forward/headaches
Was due to have scans in 2 months time for checks of 2 x 5mm nods on my right lung but met my Oncologist for the first time last week who has advised I have scans next week. Confirmation of growth and still 2 nods means possible resection and no meds at this time. If there are more nodes, depending how many still possible…
More news from Djinnie! Good news!
Hello everyone! I was very excited to receive a really long and lovely email from Djinnie! She is now in a hospital on the coast of France. Djinnie spoke about it so eloquently, it would be silly for me to try and paraphrase it, so here is an exerpt from her email: "They are a unique hospital in every way, they work…
They can't do my scan....
Ok...this is the longest I have been between scans since my initial Met. Since my last scan, I had some other medical issues which resulted in a pacemaker. I called up immediately, and was told that they just need the paperwork on the device (MRI complient). Well, now, they told me that they made a mistake....and I need to…
Sutent and Clinical Trial Update
It has been a long time since I last posted. I had decided that after all of the issues I had with my clinical trial:7 hospital stays, loss of my thyroid, rod in arm due to bone cancer, and the loss of my adrenal glands that I would hold off with the bad news and wait till I had something positive to write about. Well that…
Just Diagnosed and Very Scared
Hi Everyone, You all seem like a wonderful group of people and I feel blessed to have found this site. I have been reading through this site and it has given me courage. I was recently diagnosed with kidney cancer two days ago. I am 44 years old mom with two young children. I am very scared. My primary care doctor told me…
Scanxiety is running high this week!
My last several sets of scans were remarkably devoid of anxiety. I felt pretty good going in, and everything was good. Now, we have extened the duration (5 months since the last scan). I have convinced myself that my new back pain is going to be bad news....it is a sharp pain right in the spine, about even with my…
NED @ almost 3 years
Just had xray, bloodwork at 2.7 months, post full neph. eGRF 1.23 NED. God Bless!
Boston Marathon
I just got back from running the Boston Marathon on Monday -- an amazing experience. It's been a little over 10 months from my partial neph that was done in May 2014. Although I fell short of my goal time I was only 3 minutes off qualifying to do it again next year. It was my 2nd marathon since the surgery and I finally…
We have another NED!
I got the all clear! I cannot believe the relief I felt. The doctor told me we can move to scans once a year. I quietly said no. He said "no problem". I am not even 18 months out of surgery - and stage 3. He was great though. I had a few questions written out and I could barely stammer the words. I finally got one question…
RCC and VHL
Im a new member! Hello. Im 41 years old and was diagnosed with RCC at age 32. 4cm clear cell carcinoma stage I confined to kidney. Right side partial nephrectomy. All has been clear for the last 10 years. Recently had a run in with a kidney stone and had a ultrasound which said I had renal cyst 4.5 cm. A 6cm FNH on my…
Renal Cell Cancer Survivor and Votrient Side Affects
I am an USAF retiree. I retired from active duty in 1990. During the Christmas Holidays of 2007, the onset of RCC or Kidney Cancer occurred out of the clear blue sky. My 'About Me" page has more information about this. Since the day of diagnosis, I have survived RCC three times. I am now on an 800mg Votrient regiment daily…
2nd post Partial Neph scan tomorrow
I'm not too nervous, but admittedly a little anxious. Surgery was 18 months ago, only had one followup last May. With my history, it should be more frequent, but Uro thinks I'm done after this one. I'll have the results in the mail before I see him in May too. Heres hoping it's all clear!
Possible Kidney Cancer 23 years after surviving Ovarian Cancer
Hello everyone, I followed this forum a few years back after my daughter was diagnosed with Osteosarcoma. She battled the monster for over 2 years but she lost the fight 3 years ago. I came back here to share my story and to try maybe to find some sense out of this whole thing! I had a couple of pap smears coming back…
39 months NED
Hi All, I don't come here often anymore but this place sure was/is a blessing to me back in December of 2011 when I received my diagnosis. It is awesome to see many people still here from that time but sad to see so many new faces. I just wanted to report good news for my old friends and give the newbies some positive…
Home and Recovering After Second Surgery
Hi Everyone, A week ago I underwent my second open surgery which finally resulted in the total removal of my right kidney. Still waiting on pathology report but pretty certain that the hard golf-ball sized tumor was indeed malignant. The surgery was a couple of hours longer because of previous surgery scar tissue…
husband now has possible malignant node in thyroid
Hi I've been on the kidney board since Feb when my husband had a complete kidney removed. shortly after he complained of severe neck pain. A CT Was done followed by a needle biopsy. Results were given to us yesterday. Seems there is a "Follicular Neoplsm" this means tat it may be benign but that surgical excision is…
UPDATE: NED! Scan day on Wednesday, 18 months post op Stage 3 chromophobe
Well, it looks like my husband is up next in this streak of scans. . . Wednesday. I think right now I have the opposite of scanxiety. Bizarre calmness. I don't think I would be able to go through it without the support of you all here. It has been a very long 18 months and our new normal of living between the scans as I…
My doctor is retiring
Just got a letter from my oncologist, Geoffrey Weiss at UVa, saying he is retiring July 1. They will send a follow up letter telling me who my new doc will be I guess. I did meet one other doc when I was in for IL-2 so maybe that will be him. I wonder if maybe Dr Weiss's reluctance to go for Nivolumab off label had…
Resuming training after partial neph surgery
Hello fellow partial nephs, As of today, I hit the 1 month mark since surgery. Like many of you, I was pretty active prior to surgery: mostly a road biker, but I run a bit (not very fast) and swim (even worse). Couple tri's over past year... . My question is about how you have handled recovery with respect to re-engaging…
Nervous, scared - should not have read my reports
Tomorrow is my follow-up wtih Dr. Molina. I'm praying for a positive report, but after reading my old radiology reports I'm not so sure. The biggest liver leson did grow from the time of my CT scan to the follow-up MRI. From what I understand growth is not good. In addtion, the radilogy recommendation is metastasis must be…
Question - frequency of scans vs. Xray
My Oncologist is now ordering just 1 scan/ year. Xray & bloodwork only at 6 months. She says at the 2.5 -3 year mark with NED that this is fine. Thoughts? I've been getting 2-3 scans/ year and the 1st year I had 4. I had a 5.0cm RCC Stage 1 / Grade 1 - My surgery was 07/2012.
I've been peeking in...
Hi everybody! I've been peekin in very often since my partial Nepherectomy on September 30th. Okay, where to start. I do speak english and do a lot of reading in english as well, but writing about feelings and so on is much more complicated for me to write about. I want to say I basically believe in the good of people but…
My Wish
My Wish I wish there was a cure for cancer All cancer Not one over the other Who gets more money than the other- Just cure cancer! No more tests CT scans, MRI's, Bone scans, Pet scans, mammograms, Colonoscopy, endoscopy, which one works better? No more needles No more contrast, or without Just cure cancer All cancer No…
Votrient failed, on to Afinitor
I had such good results at three months on Votrient so I was surprised today that the six month scan showed progression in all of the lung mets. I will be starting Afinitor and he wants to see me again in three short weeks--maybe because they need early blood tests. I did have my lowest creatinine in 18 months at 1.59.…
cyrosurgery 7months ago
7 months ago my husband had cyrosugery done to "freeze" a cancer spot on his kidney. Results after left him in much pain and swelling...he is still in the same pain. After many doctors for answers a VA doctor told him it's "RSD" Reflex Sympathetic Dystrophy Syndrome. Anyone know about this? A block is what is talked about.
Had my 2nd opinion about my liver lesions and learned I'm pRCC
I met the AMAZING Dr. Molina yesterday. I LOVE her. Sorry for all the caps, but I loved her. I learned I have papillary RCC which I did not know before. She said it makes up around 10% of all RCC cases. She immediately ordered all new scans, bloodwork etc. She promised to get to the bottom of the lesion and go from there.…
News about our Djinnie
Hello dear friends, I have been communicating with Djinnie since she "signed off". Unfortunately, she is going downhill very fast. My heart is breaking for all that she has endured. She is in a lot of pain, the morphine isn't doing much at all. I am hoping they advocated for different meds for her. She has asked me to let…
6 month CT results: ...
NED oh yeah!!! All clear, still have this small 3mm nodule on lung but it hasn't grown since last scan so... Really happy with the results!! Next step, genetic test in a couple of weeks and next Ct in 6 months.
Stage 3 question
I have noticed that most of the people here are stage 1, 2 or 4. I believe that there really aren't that many stage 3's out there - am I right? Maybe it is my scanxiety (scan coming up on Thursday) but I really am just wondering how many stage 3's out there have remained stage 3? Also I have noticed that treatments have…

Kidney Cancer

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