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Links for new members.....
Staging Treatment Etc. http://www.patientresource.com/RCC_Overview.aspx http://www.patientresource.com/RCC_Diagnosing.aspx http://www.patientresource.com/RCC_Staging.aspx
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Pre Op
Pre op done! Surgery Monday morning. Surprisingly I'm not nervous about it but I will be glad when it is over Cindy
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struggling
Hi. hope this is ok to share. Ive been reeding this forum since being diagnosed just over 2 years ago. Three years ago had a bowel resection and because i still had problems they did ct scan and found tumor in kidney. They found that the tumor was allready there 2 years previosly but it was missed. Had an open nephrectomy…
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Update & slight rant
in the days/months after my surgery I was here a great deal. I will never forget the support that I have received from everyone. It's been 7 months since my partial nephrectomy in which I found our that I had RCC. Everyone was so warm and welcoming and responsive to my questions. I went back back to work before I should…
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Best Birthday Present Ever
Hi, I just got a call from my doctor's office and my tumor was 100% benign. I plan on sticking around because I really care about all of you and want to continue to offer my support and prayers when needed. You guys were there for me when I suffered a month of sleepless nights and mounds of anxiety. XXXOOO Diana
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IL2 blog
Spent yesterday getting scanned and ported and got my first dose about six hours ago. No nasty side effects but I am told these will come with subsequent doses. Staff have all been great and my wife is here sleeping in a chair. Really didn't need any help yesterday but I am sure that will change too. this protocol is for…
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ALL CLEAR
my husband's scans, bone and CTs along with his MRI were all good; looks like both laminectomy and cyber radiated met are either shrinking or healing (the latter obviously the laminectomy) So, another 3 month reprieve and now we are in maternity ward awaiting the birth of our second grandchild. Sarah
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Nearly a week since my surgery already?
A little update on how things have been progressing for this newbie. As far as how I am feeling I can say I am still quite sore. My innards just literally feel like they are out of place. From time to time I can feel and hear things shift position in there and that's a little disconcerting. I'm suffereing from a good bit…
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2 weeks in Ipilimimab and Nivolumab Trial
Two weeks in and all blood tests are fine but this week I have really felt tired and just cant seem to catch up on my sleep/rest. Body just aches and I have had some issues with being a bit lightheaded at times. Hands are starting to peel which I was told could happen. 2nd infusion on March 4. Are these side effects…
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Numero Uno Scan post Operative.
So tomorrow I go in for my first post operative scan. Barium sulfate cocktail at 10 pm followed by another in the morning. Chest and abdomen. Now the concerning part besides the obvious is that this appointment had been set up since November. I returned from a business trip this week, and I had not heard anything about…
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Genetics, chromophobe RCC and children
I was wondering if anyone that is diagnosed with this type of RCC (non-clear cell, chromophobe) has ever met with a geneticist out of concern for their children? I'm not sure we got the best advice from our oncologist based on what we heard yesterday at a conference (brief reference was made that chromophobe may be a…
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Cedars Sinai Kidney Cancer Conference yesterday (Feb 22)
My husband and I attended this yesterday in Los Angeles. We enjoyed it very much and were pleased to hear that the sessions were recorded and will ultimately be available to anyone who wishes to view them on the Kidney Cancer Association's website. I'm not sure when. You can view the list of topics covered in the…
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Just more bad news!
I have to go for fresh scans and a round of testing over the next few weeks. After suffering from an incessant cough for over a week I was sent for an X-ray. The result of which shows a new mass in my left lung. I was devasted, I am at a loss, I really don't understand how these growths are manifesting at such speed. From…
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I was out partying tonight!
HI All, I went out for a prebirthday celebration tonight with one of my girlfriends. I saw movie (Winter's Tale), then I had dinner at The Bonefish Grill and then out for drinks with a little live music. I did lots of housework during the day, I got home at 12:30 and I feel great!!!! I'm going back to work on Monday which…
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survey of nivolumab and other pd-1/pd-L1 drug trialists
Hi, I am a caregiver/advocate for my mother who has stage IV, grade IV, clear cell renal cell carcinoma with rhabdoid features and necrosis. Post nephrectomy she was given sunitinib which resulted in stable disease for several months. The mets are confined to her lungs and are growing very rapidly. She was recently…
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Victory over the C word!
Hi all! I haven't posted for quite some time but I have been lurking now and then to keep up with the news on the pros like Fox (congrats on finishing and surviving the IL2!) and so many others of you with much tougher cases than mine (I was T1b grade 2). Partly I have stayed away (well except for the lurking) because I…
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New Doctor...learned some things...
It was early Thurs Morning...about 5:45 AM when, while driving to a neighboring metropolitin area to visit a Doctor...I was thinking...I am driving at this hour to see a Doctor...something must be wrong with me....and there is...Metastatic Kidney Cancer. For refersher, in January, I was kicked out of the Familial Kidney…
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Some results
We really like the UCSF system of posting results online as soon as the tests are read..... unless, they are so busy and don't get a chance to read them. after checking repeatedly, I finally called the doctor's office who got verbal reports on 2 of the 4 so the bone scan was good as was the pelvic scan; we will have to…
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IL 21 + anti PD 1 combo trial
Hello All! This is a trial that I know is currently available at Yale Univ (where my dad will be going) though I don't know yet if we will be offered it or if he will qualify of course, but I am looking for some background info so I can be prepared. First I've read a ton about IL-2, but barely anything on IL-21... does…
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Onward and upwards
Surgery was completed in about 4 hours. Negative margins stage I. Just a little sore and I should leave tomorrow. So now its back to waiting for the full pathology. But based on what he saw surgeon feels very strongly it was not responsible for my weight loss. So I still have more tests to go through with after I heal.
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Todd
Todd: By now, you have had your scans and have had you on my mind since my husband has his tomorrow. So, please check in and post your (HOPEFULLY) good results! Sarah
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Any contraindication for a shingles vaccine?
Agewise, I just qualified to get a shingles vaccine. Anyone know of any contracindications?
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32 years old newly diagnosed 2014
Hi everyone, Been lurking around since the beginning of the year. A brief timeline of my diagnosis is below. 1/3/2014: Went to family doc because of a testicle pain (thought it might be a vericocele) Doc ordered an ultrasound to see what the problem was. 1/4/2014: Had ultrasound, (no testicular issues). They check the…
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Good Luck with the Scan tomorrow Todd!
Hi Todd, Just wanted to wish all the best with the scan tomorrow! I will be thinking of you! I fully expect you to come back with a hangover from all the celebrating:) Djinnie x
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surgery done on 2/12/14
Well, I went in for my left kidney robotic laparoscopic nephrectomy. It took the whole procedure with us having to be there at 10am. I Wasn't back to room infill almost 7pm. They got everything and they only had to have maybe 1/4 or more of more of kidney now it's the hard part: healing omg does it hurt. The gas has…
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Cking in
Evening all just checking in hoping every1 is doing well.
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living with nephrostomy tubes
Hi! New to this board, but unfortunately, long time "lurker" and occassional contributor to the breast cancer board, starting 6 years ago. Being treated for BC mets to the adrenal since last April. Last scan showed hydronephrosis in kidney on other side. Ended up this week getting a nephrostomy tube. Not that hard to…
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It wasn't Cancer
I wanted to share this to try and relate this perspective.. At one time or another (or constantly) we all fear the worst and that the Cancer will do us in. Sadly that happens.. but I just got an e-mail from a pal's wife... Yup my pal passed away yesterday... geeesh. He did not have Cancer... In fact I had recently talked…
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Nexavar
Strange question. I have been on nexavar for over a week and doing ok. The thing is, my scalp is tender, not itching so it is not lice, just tender to the touch. It doesn't hurt, like I said just tender. Is this a common side affect? I haven't read where it is so I am wondering. Is this what it feels like before my hair…
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Robotic Surgery March 3rd
I will be having my first ever surgery (not bad for 55 years) on March 3rd for a 2 cm tumor on my right kidney. I am a snow bird that lives in Michigan in the summer and Florida in the winter and after going to the hospital in Florida for pain in my left kidney the mass was discovered. Because I have lipomas I chose to…