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Update on my Dad -- this disease is garbage
Dad is not doing well. He is very weak and gets out of breath by getting up and being transferred to his wheel chair. This causes breathless episodes that scare him. Last week he had two episodes of breahlessness at the oncologists office, so they sent him home with oxygen, after pulling fluid off his lungs. These…
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HAVE YOU JUST BEEN DIAGNOSED?
I'll try to keep my background short, just to get to my point. After seeking help for a kidney stone on my left kidney, I was diagnosed with a 2.9 cm kidney tumor on my right kidney in March 2013 by a Urologist with likely metastasis (due to location) and with that a diagnosis of 1-1.5 years. I was scheduled for radical…
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Surgery.
had my hernia robotically repaired yesterday. I hurt like hell, but the bump is gone! Soon, I’ll be back to being active. the surgery was actually more complicated then he thought and took twice as long. He spotted another spot that was about to pop and fixed that too. 2 for 1 sale, I guess. I hope everyone is doing well.
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Svt Supraventricular tachycardia
My husband got his third immunotherapy treatment on Monday and his heart is back to racing. Anybody having this issue. He has betablockers but then it starts racing a few hours later. Anyvo9 have suggestions.
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What to expect / Questions to ask
Good afternoon! I've spent a bit of time reading some of the topics and felt I might benfit by asking a few questions. I'm a 37 and was found (incidentally) to have a mass on my left kidney on 9/3. Follow up ultrasound showed it appeared to be solid and the docotor scheduled a CT w/ contrast. I recieved those results…
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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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Paying for cancer treatment
Hello to everyone, I appreciate reading all the positive vibes from all on this discussion format. I am new to the Cancer word and still trying to get all the information i can while making my decisions. I am a 65 year old male who has had his kidney removed from cancer, with a prognosis of stage 3 grade 3. I was told my…
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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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Status Quo - I'll take it
My abdominal sono, renal sono and chest x-ray were all NED last week! Bloodwork was great too. We're rotating ultrasound and x-rays with CT or MRIs to limit radiation. Doc is pleased and so am I! Next up - MRI in December. Until then, I'll keep on keeping on. Know that I'm thankful for all of you as we navigate this RCC…
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And my results are in - meeting with my doc Tuesday
So, I had my first scans since starting IPI/NIVO (CT and MR on Friday) and the results hit my patient portal early this morning. I am trying to fight off a nasty summer cold that my son shared with me, so I was conveniently awake at 3:30AM when I got the email from Mayo. Of course, I couldn't stop myself from taking a…
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Grapefruit juice?
Anybody have a bad reaction to grapefruit juice after starting immunotherapy?
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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…