• Questions about Opdivo and Advanced Renal Cell Carcinoma

    Asked by Glitteryblue on Friday, January 12, 2018

    Questions about Opdivo and Advanced Renal Cell Carcinoma

    My husband will soon receive his fifth infusion of Opdivo then will be scheduled for his first scan. He has a large mediastinal tumor that has begun to cause him pain as well as inumerable lung nodules and bone lesions in his sacrum and shoulder and ribs. Has anyone dx with advanced RCC had luck with Opdivo? I would like to correspond with you. My husband is 54 and recently had a spinal fusion and removal of large tumor on his L-5 so he would not lose function in his legs and to lessen the pain from the tumor pressing on the spinal nerves. He did quite well with the surgery and is very mobile. We have major anxiety coming up with these scans. Just looking for folks who have had success with Opdivo. Thanks for listening! I look forward to meeting some new folks and sharing experiences.

    4 Answers from the Community

    4 answers
    • SueRae1's Avatar

      Hugs, healing vibes and prayers to both of you. I wish I could help you - but I was on Suntinib and Afintor when I was being treated for stage IV Kidney cancer.

      about 2 years ago
    • andreacha's Avatar

      I'm truly sorry that your husband is so ill. At least he has you as a great caregiver. I've had Stage IV RCC since 2006. Huge surgery that year (to include heart bypass)for removal of the right kidney. Had surgery for a small mass on my left kidney in late 07. Around the first of 2012, another small mass was found on the kidney again. The nephrologist surgeon said he wouldn't touch it this time because of the location. I've been on an oral chemo called Sutent since that time. After all these years it is becoming less effective. Had a small mass on my right lung - 8mm.We waited to see what the next quarterly scan would show and it had decreased in size to 3.1mm.Because of inclement weather here last week I missed my next MRI's and CT. Have to wait for another 2 weeks to have them. I have to have weekly blood work to determine if I can actually take my Sutent for the scheduled week to take it. My original dosage was cut in half and the original schedule of taking it for 2 weeks at a time was cut in half also. My numbers are up and down all the time. My Oncologist told me that the day may come sooner rather than later to come off of the oral chemo.He has suggested that I start on Opdivo when that time comes. I do know of people that have had Opdivo and tolerated it relatively well and it was successful in fighting their Cancer. Everyone is different of course but I am willing to try it. He (the oncologist) feels that the Opdivo would be the best option, particularly because the results with RCC have been very encouraging. I am nervous about taking an IV chemo no matter what it is. Taking a pill is so much easier but if I have the opportunity to improve my condition, I'll go with it. I fully understand your anxiety about the upcoming scans. Been there - done that. I pray that you will see substantial improvement. Please be sure to let us know how he is doing.

      about 2 years ago
    • Mrssherrymarie's Avatar

      HI, My mother was diagnosed with RCC in fall 2013 and she started with Sutent x 1 year then Turisal infusion 1 x per week (this did not work for her). She was switched to Opdivo in later summer 2016. At the time she had lymph node and lymph involvement. She also had many tumors in her lungs. She tolerated the Opdivo (and she has nay allergies and drug reactions--so she has listed medications she is able to take) and her CT scans for her lungs cleared. I'm not kidding it was a miracle to watch each scan every 2-3 months, tomors shrunk, the haziness of the affected lymph cleared. Her oncologist said she was in remission after 8-9 months of treatment and joked that she didn't need him anymore and her results were amazing. She's been in remission for about 8 months, no treatments at all. Unfortunately, it did come back, couple nodules showed up on her CT scan and the plan is to go back on Opdivo but so far, no one has ever "gone back" on Opdivo. The other misfortune of hers is that she began to act oddly and was very tired and swollen in her legs. She does have mets to her brain which they are now going to treat with targeted radiation (CyberKnife)..This treatment does look promising. As Im writing this I know that it's incredible sad but the reality is that she was told she would only live for 2 years in 2013. The medical team now working with her are absolutely floored at the fact that she is beyond 2 additional years from the initial prognosis. She has defied their odds and I truly believe that her Oncologist's choice to put her on Opdivo was the best life saving decision that could have ever happened to her. She had very little side effects from it. Going for the IV every other week was like stopping in at Starbucks, getting her juice and she'd go about her business. She maintained her independence all this time and as far as I'm concerned, it is a miracle drug that gave her quality time here with her family. She was 67 when she was diagnosed and she is now 71 and it will be 5 years in September 2018 of her initial diagnosis of Stage IV renal cell carcinoma with mets to her lungs and lymph nodes. Best of luck to everyone.

      almost 2 years ago

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