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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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dad just got diagnosed. need advice on how to interact/what to ask him...
so, my father, whom i love dearly but have a contentious relationship with (my sister doesnt speak to him at all anymore :( ) just was diagnosed with kidney cancer. hes not a big sharer. hes also flying across the country and going to see a dr in my area; hell be staying with me. im going to support him and be as calm as i…
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The one thing.
i will admit, I’m about half drunk, doesnt happen often. I got to thinking about you guys and what we mean to each other. The one thing that brings us together is a disease that’s going to kill some of us. That’s f’ed up. I have no reason to know any of you, except that one thing. I have A 53 per cent chance of recurrence.…
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** BOOK ** Recommendation to fellow patients - Link updated
Taking Charge of Cancer - What You Need to Know to Get the Best Treatment I'm recommending this book to fellow cancer patients... by Dr. David Palma MD PhD. It is recommended by another patient advocate who has read a lot about navigating the cancer world, and we think this book is really helpful. I wish I read this after…
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Lee Allen's father passed today~
He posted that he lost his father today on his running post. I thought you ALL should know and send him your thoughts. Lee and family, I FEEL for all you are going through. I know this has been a roller coaster ride for you all! Please know that I, and others here I am sure, will hold your heart in our hands. Dad is okay…
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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 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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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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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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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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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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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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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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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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new kidney network member
hello, all. have only read about 20 posts but am appreciating all of them. finding that joy & yuk-yuks help me release stress about cancer. we had such a mighty fine belly laff from iceman's GIVING UP KIDNEY PIE comment, that it's my username. any kidney jokes, comics, funny stories, things kids say about the kidney that…
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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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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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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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A Farewell Tour - of sorts
Many of you may remember that the band The Who had a "Farewell Tour" in 1982. They had another one a few years later, and then later a "Final Farewell Tour." And they're still touring and playing today. With that in mind, I decided to do something while I'm still healthy enough to pull it off. I'm calling it my "First…
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Pathology back
So pathology came back, as it turns out they took out a T1a clear cell carcinoma-g2. Somehow revisiting all my grief and worries now that the pathology has been confirmed... Paralysed by all the stars that lined up for things to work out for me and am the things that went well when things could've gone the other way.…
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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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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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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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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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Runners with only one kidney
Hi everyone. I am new to this site. Just diagnosed on June 22nd with kidney cancer (right kidney). I had radical nephrectomy on July 2nd and am recovering slowly. I have been an avid runner, which is how I found out about the cancer. I ran a race in hot Tennessee on June 20th and got severely dehydrated and ended up in…
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Question on nausea
Hi all, I’ve got a 4.1 cm mass on the top of my kidney that I am scheduled to have removed in less than two weeks via robotic surgery. My outlook in that regards is likely quite good and while I am not looking forward to the surgery, I am not getting all that anxious about it And consider myself lucky that it was caught…
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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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Sweet 16 today, 75 years young last week
some observations and a few thoughts: NED X 16 NBD X 16 Each of the 5 grandchildren has become 16 years older. No new ones. The 18 year old girl I met on the beach (Icewoman) will be 74 next monthl. The survivor rates for each Stage of RCC have increased over the last 16 years. Ice Tongs are no longer used for RCC Surgery.…
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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