Anyone on "Opdivo" for mRenal Cell Carcinoma?

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Anyone on "Opdivo" for mRenal Cell Carcinoma?

by jeffsbride on Tue Dec 22, 2015 06:14 AM

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My husband was diagnosed with Renal Cell Carcinoma of the left kidney on 11/28/15 with mets to the right lung. He does not have primary doctor so ER doc recommened us to MDA in Houston, Tx. MDA scheduled surgery to remove his left kidney on 12/16/15 but they wanted a CT scan of his chest before surgery. That was done on 12/12/15. The results came back with mets on his left lung as well. So they postponed the surgery and ordered an MRI of his brain and 2 MRI's on his spine, one with contrast and one without. They were done Saturday the 19th. A clinicial nurse came in & talked to us about this clinical trial "Opdivo" so has anyone out there started treatment of "Opdivo" and if so I would love to hear from you. A little background, my husband & I have been married for 33 years. This man has never, ever missed work due to sickness or pain. A couple months ago he started with a nagging cough, he self medicated and felt better but said his taste buds were making food taste terrible so he quit eating which made him lose approx. 50 lbs in 2 months. I still couldn't convenience him to go see a doctor. (I'm fine, he said!) Monday the week of Thanksgiving he came home from work with a horrible low back pain on his RIGHT side, but kept going to work until Saturday the 19th when he woke me up asking me to bring him to the ER. I knew the pain had to be bad for him to do that. We figured it must be kidney stones. (If only it was kidney stones.) CT scan showed a large mass on his LEFT kidney and some spots on his Right lung and that's when our world turned upside down. 3 weeks ago my 6'5" Paul Bunyan husband who was weighing 330 lbs (I know he was overweight but...) he is now 267 lbs still having this horrible pain in his lower RIGHT side that he has to be on morphine every 4 hours just to be able to be comfortable. (Only pain meds he has ever taken in his life has been BC powders YUCK) I pray that the MRI's will help explain the pain since it is on the opposite side of the kidney that actually has the mass. Doctor seems baffled as to why he's hurting there also but if he could just get some relief from the pain I think that would help so much for his state of mind and his well being. He hates that I have to do EVERYTHING for him and I mean everything because he's in so much pain. I just remind him...through sickness and health babe, through sickness & health! We are going to get through this.  Again if anyone is out there that is on "Opdivo" I would love to ask you some questions. 

Thanks and God Bless!

Jeffsbride

RE: Anyone on "Opdivo" for mRenal Cell Carcinoma?

by Mgall on Wed Dec 30, 2015 10:53 AM

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Hello!! My mom just recently started OPDIVO for stage 4 RCC. Her first treatment was Monday the 21st of December 2015. Prior to that she had been on sutent for severa years and then inlyta. Horrible reaction to inlyta - ended up in hospital with seizures and swollen brain. All drugs in this class are now off limits for her. Op divot is her last hope. She is been in horrible increased pain since starting opdivo. She is having pin as well on the opposite side of the tumor site - mets to lumbar spine is what bothers her the most. (Kidney was removed 3 years ago). This our last ditch hope after this its hospice and we will know in about 2 weeks which direction things will go. She is currently taking so much pain Medacagion it's awful. 6mg of dialaudid every 3 hours and 100 mg Fentanly patch. This is the most she has ever been on in all the years she has been sick. Please keep me Posted on how you all are doing. This is a lonely journey and I would love to connect with someone. Thank you ! Michelle

RE: Anyone on "Opdivo" for mRenal Cell Carcinoma?

by jane99 on Sun Jan 03, 2016 09:29 PM

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I am sorry to hear about both of your battles with rcc. I haven't been on opdivo, so I am no help there. Votrient has worked for me for the last few years. But as far as the pain goes, I have had pain on the opposide side of the tumor before and ct scans have shown nothing. Now after three surgeries I have some pain in various spots which are from scar tissue hopefully. I know how scary it is when pain pops up. I am due for a ct and bone scan this month and am keeping my fingers crossed. Best of luck to you and your family members.

RE: Anyone on "Opdivo" for mRenal Cell Carcinoma?

by jboth007 on Mon Jan 04, 2016 04:32 AM

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I hear lots of GREAT stories with Opdivo for several forms of solid tumor cancers. The kidney cancer study was stopped early due to the numbers patients were acheiving on it. I would vote yes and talk to your doc and ask al the questions you have and do it. BTW, the side effects overall are very inconsequential.

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