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Drug Trial for recent nephrectomy patients

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

For anyone who has recently has a nephrectomy, I wanted to make you aware of drug trials that are out there. I know of two. Since the treatment for RCC is surgery and then watch and wait (unless there is mets), they are doing drug trials for Immonotherapy drugs to see if its helps lower recurrence. You must get started before 3 months after surgery. I found that my surgeon was not in a hurry to get to me to the Oncologist and if I had waited I would have missed a chance at this drug trial. I am still not accepted in this trial but should know by 6/14 and would start infusions that day if I'm accepted (my surgery date was 3/23). The immunotherapy is a 1 hr infusion every 3 weeks for 1 year (or until recurrence). There are not many side effects. I see if as a win-win even if I get the placebo. At least, I would feel like I'm doing something instead of just waiting. They will monitor me much closer than the regular regimen. 

The drug trial I am trying to get into is Atezolizumab (anti-pd-L1 Antibody) for patients with RCC at high risk for developing metastasis following nephrectomy. This a phase 3 study and this drug is already approved for some bladder and lung cancer. 

I just wanted any recent patients to know that there is an option besides just watchful waiting. My cancer had sarcomotiod features which makes it grade 4. I do not want to just wait around for it to come back! I am repeating my CT scan to see if a 9mm nodule (with ground glass) has grown or not in one month. I'm hoping for good news!! Terrified of bad news but no sense getting too far ahead of myself until I know anything. 

Thanks for this forum! Its very helpful!

ToyTrainman's picture
ToyTrainman
Posts: 5
Joined: Apr 2018

Unfortunately my surgeon was also not in a hurry for a referal to an oncologist. My 3mo CT came back clear but 6mo after that the CT showed metastic RCC. It was then that I received a referral. One must be in charge of their own treatment plan with input from multiple sources.

This coming Friday is my next CT, hopefully the Votrient will have at best shrunk the tumors or the very least maintained status quo with no new growth.

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

I'm so sorry! I hope the Votrient works for you. No guarantes from drug trial either but I think its exciting for RCC to have some treatment post nephrectomy for patients. My surgeon told me I could wait several months to go to Oncologist if I wanted too. I said, "No reason to wait" and I was in the Oncologists office the next week. First thing out of Oncologists mouth was, "If I were you, I'd do a drug trial." 

Good luck with your next scan! 

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