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Genetic Testing
Hey all! I went for genetic testing 4 weeks ago and just got the results. The kidney cancer was not a genetic thing, but they did find a change in one of my genes. They called it a change of unknown variance or something. They only know that it could just be us being individuals and what makes us unique. She said at this…
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Newbie with a few questions
Hi everyone! First, I want to say, "thank you" for this discussion board. I have been spending the last few weeks reading and learning alot. In June, I had lumbar spinal surgery. After the surgery I was in more pain than before surgery. After 10 days, my surgeon ordered a new MRI where the radiologist "found" my renal…
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5-year NED
I just saw Skagway's great news and wanted to also share mine!! I just got back from the oncologist's office and got an all-clear. This (a few months short of) 5-year report is a biggie to be celebrated! Stage 3 with lymphovascular invasion (that LVI reference always scared me) and here I am 5 years later with no…
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Nothing New and Nothing Grew
Stable can be a great word. I'll happily take it. It has been a hellaciously long wait for these scan results after last time 3 mo. ago, where I found out there were 'things' here, there and everywhere. I've never been so happy to see these words on paper that all is stable for now. Tells me the Cabo is doing its job and I…
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Thyroid - Opdivo/yervoy
I have been undergoing treatment for almost 4 months now. My most recent labs indicate I have hyperthyroidism. My oncologist said this was a side effect of my treatment. I'm scheduled to see endocrinologist next week. Has anyone else experienced this. I just feel zapped no energy. Any advice on what helps or treatments?…
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6 Months and NED
Had my first 6 month scans on the 6th. Went into the complex, had my CT done (w/wo contrast) and headed upstairs to an appointment with my surgeon. After about a 1/2 hour wait, I went into the exam room and sat down. About 3 minutes later, he walked in and said "Everything looks great". Nothing showed up on the CT.…
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Should I purchase a recliner?
So this is my first post! I’m 46 and I was just told I have a 3.3 cm tumour on my kidney. i have a lung ct scan tomorrow and a biopsy in a few weeks. I likely will have surgery to remove the tumour only or the entire kidney. If it‘s the entire kidney, I’m hoping that it will be done laparoscopicly. If it’s a partial it may…
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Six Month Scan Results...Howdy Uncle NED
WHEW!!!!! Have to say I was getting concerned...it took much longer than usual to see the results, so of course, I thought there was bad news. One down....four and half years to go!
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sorry not posted for ages
So had my six month scan in April and feel blessed to say it was NED, also i have been signed off by the lung specialist as the nodule that they were re scanning after 3 months and then again looking at on the six month scan they have now determined as imflammation/scarring from an infection in the past ! Ive seen a few…
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GFR
My latest gfr reading is 39 down from 45 in May. I had a partial nephrectomy in March. Should I be concerned? I am 77 years so maybe this is normal for my age.
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Treatment working
I had my first scans after starting treatment. It was good news! Two tumors in my lungs have shrunk 37% and one tiny one is not visible. We are very happy and I will continue on this trial Cabo + pembrolizamab (keytruda). I am very cautiously optimistic. I know that TKIs only work for a while. My Dr explained that that is…
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1 year= 2 sets of scans
All NED I guess!!! I have one 4mm nodule that has stayed the same size now since the beginning and no one seems to worried about it so I will try and do the same! Thank you ALL for all the help along the way!!
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5 Years on
Hey all, Just wanted to pass on some good karma. A little background for those who dont know me: After a severe incident of hemituria in July 2013 I was diagnosed with a largish tumour on my right kidney. Surgery for a right renal nephrectomy in October resulted in the excision of a 5x7 cm Stage 1BMXN0. Monitoring over the…
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Opdivo/Yervoy
I was wondering who here has had a positive response to the opdivo/yervoy combo? Specifically on liver mets.
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It's so anticlimactic...
I read messages from Fox and news about Dave. Then I go in for my 12 year check up and get to come out with good news. To say my road has been easy is just plain, not true. But somehouw, I have come out of the tunnel with another NED. I say 12 years, but the little sh*t popped up at years 11 and 10; and I have had a few…
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My relay
Here is a link to my relay, if you would like to support. Anything is appreciated. http://main.acsevents.org/site/TR/RelayForLife/RFLCY18NCR?px=47755174&pg=personal&fr_id=87354 Thanks, Crash
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Medication
Anyone know of a program where unopened medication can go to people who can't afford to buy it? I have an unopened botttle of 200mg Votrient a months supply and almost a full month of Lovenox blood thinning syringes. I was taking that 2x a day. I had to change from Votrient to Caboo. And from Lovenox to another blood…
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What happened?
first, Abuni, and , Amy, you have all my karma. Unbelievable. FLY. I've done great for a long time. But my cancer continues. Extensive growth, pain, brain tumors, vision, fatique, and comprehension limit everything. My only real goal is to be as pain free and independent as possible from this point on. My body won't quit…
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Pain management in hospital lacking
so I had my partial nephrectomy this morning. Went well I was told. Mass might not even be RCC. Cyst removed as well. Great friendly staff at small hospital but the pain mgmt approach is confusing. maybe bec I said I was a “5”. They gave me 100 mg tramadol, few hours later 15 mg hydrocodone, then toradol 15 mg. no change…
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Trying not to panic
Just received call from surgeon after radical nephrectomy last Tuesday. Expecting non-invasive, non-malignant tumor. Instead told stage 3 invasive urothelial carcinoma with 50% survival rate after chemo. Reading pathology report looks like 7.9cm tumor. What the hell do I do now???
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Abunai
Hi all, This is Cathy, Abunai's wife. Dave has been on hospice since Wednesday, and has had good and not so good days. Today was an okay day, and he's been able to talk and get some thoughts across. He wanted me to tell you what is going on, and that he loves you all. He gained a lot of strength from this board and the…
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Four years cancerversary
Four years ago, I was diagnosed with an ugly 10cm monster, just few months after our first wedding anniversary and in my 30s. I was sure it would be impossible to survive. Three of my grandparents and my friend's son, all passed away few months post their diagnosis, so I imagined the same story would happen to me too and…
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Inlyta (axititib) is working
I got my PET/CT scan results after two months on axititib as a 3rd-line treatment: bone mets have decreased in size and soft tissue mets have resolved. Praise God!
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newly diagnosed
Hello and I hope you all are doing well. On Monday, it was confirmed via CT abdomen that I have a 2cm RCC in the interpoar region of left kidney fully contained with no abdominal evidence of metastis. But, also a 0.3 cm pulmonary nodule that showed incidently in the right middle lobe. Follow up chest CT said no definite…
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Is 6 month CT scan correct protocol?
Today, I went to see my oncologist Dr. Randall at UCSD for my 3 month post surgery CT scan and blood work. The result is NED and my blood work is great so therefore my oncologist set me for CT and blood work every 6 month instead of 3 month. I told my Doctor that I am not comfortable to have 6 month CT scan because on my…
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Hernias After Surgery
Have any of you had to deal with hernias after your surgery? I have lumps in my abdomen right around the points they went in laproascopically...I haven't had them diagnosed as hernias yet, but I'm pretty sure that's what's going on. Is this a common thing or am I just lucky? Thanks, Jim
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Never bragging
Just so thankful to my Heavenly Father my 6 month scan was NED. Praying hard for you all.
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I’m FREEZING! We’re watching my tumor right now...
I was diagnosed with papillary renal cell carcinoma quite by accident last year... the mass showed up on a lumbar spine MRI. The sharp-eyed radiologist at my favorite imaging center caught it and alerted my PCP, telling him to schedule me for a CT without/with contrast, as he felt “it was concerning for RCC”. He nailed it!…
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Scans coming up too!!
There seem to be lots of us having scans around this time. I have my first scan after starting treatment this Friday. I am pretty nervous!! I know you all understand what this feels like. I am thrilled for Mark and Amy who have seen some success from their treatment. I am a bit jealous that I am not on ipi/nivo too! I know…
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Scans on Friday-1 year
Tomorrow is a year to the day that the Doc told me I had a kidney stone and small mass in my left Kidney. Friday is my secondad set of 6 month scans. I have been having a little rib pain on both sides,not sure if it's just from working hard or anxiety or both or the Big C is back to get me!! Overall feel pretty good…