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Bone Scan versus PET Scan
So I saw oncologist #2 yesterday. My CT scan prior to my nephrectomy had a questionable 1cm spot on my right femur. I had assumed it was nothing because my urologist/surgeon didn't menion it and hadn't planned to do anything special except, I suppose, have another look in 6 months. Oncologist #1 last week thought we should…
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Afinitor 10mg and 7.5mg Blister Packs Available
I have asked my husband's oncologist what to do with the Afinitor they took him off of. They said destroy it, I just hate to destroy about $8,000-$10,000 worth of medicine. Does anyone on on here take the Afinitor 10mg or 7.5mg. They are individual blister pack wrapped so noone has touched the pills. Please comment here if…
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The Cancer Survival Toolbox
Someone on KIDNEY_ONC has just drawn attention to The Cancer Survival Toolbox which is available free in both audio and script form on the Web, at this link: https://secure2.convio.net/nccs/site/Ecommerce/815932401?store_id=1301 It has been put together under the auspices of the National Coalition For Cancer Survivorship…
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New to Kidney Cancer - dealing with new emotions
Good day, I thought I understood the emotion of cancer, having lost my paternal grandfather to lung cancer, my father to multiple mylenoma and my mother to lung cancer. However, after 6 months of investigation for hypertension, an abdominal CT with and without contrast showed liver cysts and 2 solid mass tumours on the…
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Sad Christmas
This Christmas was sad. How to think of life when the only thing in my mind in death. My mother was in pain all day Christmas Eve. She takes morphine every 3 hours. Christmas day same thing in pain and in tears. Mom was diagnosed 1 year ago. But the last 4 months have been horrible. Its hard to celebrate, to be happy when…
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How Kidney Cancer Spreads to Distant Organs
This is an interesting article: http://www.mskcc.org/blog/new-findings-clarify-how-kidney-spreads-distant-organs Looks like we'll eventually be able to insert an active link however the button is "grayed-out"/inactive for now. --David
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Recovery seems stuck in time
On Friday I was six weeks out from my partial nephrectomy, done laparscopically. I did very well just post-op but I'm feeling frustrated as I seem to be pretty much the same every day. I seem to be ok if I don't do anything, but if I go out food shopping or just try and do a little housework my stomach swells up and I get…
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On the lighter side - Dr. House and RCC
Sorry to deflect onto something lighter, but was watching an old "House" rerun last night. In the story, a patient who has a history of RCC and its recurrance is being treated for smallpox symptoms by the great House. He proposes giving interferon for the RCC recurrance. Not Sutent and not other similar meds. Why? Well, my…
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open partial nephrectomy
Hi, I'm new to this site and have been looking for some advice. I am 48 and I was diagnosed with RCC ( 2.5cm tumor, left lower kidney) mid-December 2012 and I am due for a open partial nephrectomy on 1/17/2013. Can anyone give me some sound advice on what to expect for the surgery and what to expect when I come home. Also,…
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New clear cell with Ulcerative colitis
Hello I am new to this web site and was hoping that someone could help me out. I am a stage 4 grade 3 clear cell cancer patient that has had a radical right nephrectomy and adrenalectomy. Also 1 of 2 lymph nodes was positive. My question is if there is anyone else out there with kidney cancer as well as ulcerative colitis?…
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Wensday I hope to find out about my lung mass.
I am posting here, because you all will understand. On Dec 19, six months out of surgery to remove a 5.5-6 cm clear cell (Stage 1b, grade 4 from 15% sarcomoid features), I had my first followup scan. The scan was a full torso scan, including the lungs. I expected NED, instead, I have mass was found on the upper left lung (…
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Cyst or Cancer
Dad dying of Stage IV Renal Cancer. During MY vist to ER today for Kidney Stone they told me a cyst I had 5 years earlier doubled in size from 0.6 cm to 1.3 cm. Not sure if this is a simple cyst or the complex type the report did not say. Anyone else see this before?
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Husband Diagnosed with Kidney Cancer, Stage 4
Hello everyone. I've been a lurker on your discussions for the past couple of weeks and was a little intimidated to submit as everyone here seems very knowledgeable about options, tests, labs, etc. and I'm pretty much clueless. But I do believe sharing information and getting it out there is part of the key to some day…
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IMA901/Sunitinib vaccine trial update
I haven't posted in a while and it's time to share how things are going for my husband. He entered the IMA901/Sunitinib vaccine trial in October - sadly got in the control group and didn't receive the vaccine. He's been only on Sutent for the last 4 months. After the first CT - 3 months after starting Sutent the results…
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Is there a reward for pain?
My mom has been in alot of pain due to a tumor on her spine. She received 5 treatments of radiation. She is in more pain now then before. She haS been on morphine liquit (7.5 ml) and morphine pill (45 mg) for 4 weeks. Yesterday, we had a follow up with Oncologist we explained that the morphine is not helping the pain.…
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MPDL 3280A - Back from Nashville #4
I hope it's okay I started a new thread. The old one was two pages long and quite honestly, I didn't know where to reply..the top or the bottom! Anyway, a short update (that's good!) Everything if fine. My RBC needs some tweaking...9.5, might need some more blood out there in the future. My weight is a bit of a problem.…
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spreading fast
RCC STAGE 4 I am back, i took some time away from this forum, since I posted last I had the lower loab of my rt lung removed with a 10mm nod-still have a 4mm one in the upper loab,after 4wks of sutant, I went for scan and it grew to 6.5mm and also a new 6.5mm has appeared in the rt upper loab,onc says we are going to do…
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malignant plural effusion
My husband was admitted to Duke Thursday am for shortness kfbreath they said he has a malignant plural effusiin in the right lung and put a pleurx in for drsinage at home. has anyone else had that and if so can you share anything with me about it? He is stage 4 RCC that has spread to his lungs. Thanks for any advice and if…
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ACOR - how to join lists, such as KIDNEY-ONC, RARE CANCERS, CHROMOPHOBE-RCC, CANCER-DEPRESSION, C
1) FIND YOUR LIST: If you know the name of the mailing list you want to join, go to its webpage: listserv.acor.org/archives/LISTNAME.html FOR EXAMPLE -- listserv.acor.org/archives/kidney-onc.html When you get to the archives page, click the box on the right that says "Subscribe / Unsub / Options." (If you are unsure of the…
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Nephrologist Yes or No?
Hi Everyone, I am sure there is a ton of info on this topic on the site but since it is extremely slow loading, I will ask. Should I see a nephrologist? My remaining kidney is functioning fine, just think maybe establishing myself with a nephrologist might be a good idea. Thoughts? Thanks and God Bless, Wayne
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Low Hemoglobin
My husband is 10 months out from surgery and the highest hemoglobin level he has had since that time was last May when it was 13.4. Slowly it has dropped and in December it was 10.4. His doctor told him that if it got in the 9 range and he had symptoms like last year then they would transfuse. Well the last week he has…
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Round 1 - First Oncologist
I had my first post-op with the surgeon today. I think he's a great surgeon, but he makes me nervous. He just seems so anxious to get out of the room he's practically shaking. I suppose he's like one of those high strung race horses...sorry. That's a bit off subject. However, I always end up asking half of my questions…
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Rest is not Best: Cancer survival through Active Living
was the title of an hour's lecture given by Dr. Anna Campbell in Dundee, Scotland in January. She's the leading expert (certainly in the UK, at least) on the important role of exercise in the lives of cancer patients, having spent about the last twelve years teaching and researching on that subject. She has a Master's…
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Question about blood pressure
Happy New Year to all! I have a question about high blood pressure. I was a little hesitant to post my question, because it seems trivial when placed along side some of the struggles I read about on this site. But this site has been so helpful to me and I was hoping to ease my concerns. My radical nephrectomy was done in…
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Evero;imus clinical trial
Hi Everyone. I had my left kidney removed. I was told it was RCC clear stage 2 grade 1. I am a month out of surgery and finally feeling like maybe I may beat this awful disease. THEN I had my first visit with my oncologist and I am back to doing nothing but worry.. Not so much for the cancer that I am assuming I will beat…
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Adjusting
I told my oldest son the results of my pathology report last night (Stage 3 Grade 3 N0 M0). Not something I wanted to do, but it had to be done. I've been considering why I didn't want to share it with him. Being a source of sadness to my children is one of the most difficult things for me to do. Also, I realize I have…
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Testosterone Levels
My urologist recently diagnosed me with 'Low T' and is suggesting I take Testosterone supplements. Does anyone have any experience or information on the pros and cons of this, and specifically, from the perspective of having cancer and kidney cancer. Risks? etc? Thanks. M
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Back after surgery...
All, Happy new year to all. I finally had a simple radical nephrectomy procedure on my right kidney on Dec 6. Three weeks later, I am generally feeling good except for a sore feeling in the upper right thigh joint area. This soreness is somewhat bothersome since I did not have the pain before surgery, but I want to give it…
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Pathology Report - Lymph Node Involvement
The doctor called with my path report today. I guess my doctor had tried to call a few days back and my voice mail was full. I did notice that, come to think of it. I'm a T3A N0 M0 and my grade was 3. They were calling me a T1 going into the surgery, so I'm a little shocked. Not very good news, and not what I had hoped…
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MDX-1106, part three
OK. Here we go. First of all, excuse me as I am getting a bit emotional. I do know that I am going to cry tonite. Second of all, if I begin to slur my words it's because some one told me to have a couple beers to celebrate. So, I took my own advice! Went for 7th infusion today of 10 mg/per kilogram of body weight of…