How do I start immunotherapy for metastatic kidney cancer?
Community Member
11 days ago2 1/2 years ago I had a radical nephrectomy to remove a kidney with a 5cm tumor. At the time there were no other signs of cancer and I was free of it until about a year ago when it showed up in my right lung. Over the last year we watched the cancer move to my thyroid, adrenal glands and finally to a lymph node. The new tumors have been small and have seen only minor growth but after it was found in my lymph nodes in May it was time to start treatment. Today I spent 8 hours at the infusion center to begin my clinical trial. The extensive time was required due to the extra lab work and EKGs required for the trial. The trial is the ARC20 trial and specific information can be found online if anyone is looking for a possible trial for treatment. I will try to update my progress as I navigate the treatment and hope that my experiences may help someone else.
Community Member
11 days agoStarting immunotherapy for metastatic kidney cancer typically begins with meeting an oncologist who specializes in kidney cancer to discuss treatment options, which may include checkpoint inhibitors or combination therapies that have shown promise in treating advanced renal cell carcinoma. Thank you for sharing your clinical trial experience - your updates about the ARC20 trial could be incredibly valuable for other community members who are exploring treatment options and considering clinical trials for their own kidney cancer journey.
Community Member
10 days agoToday is the day after I received my 2 infusions and stared the pills. I was warned that I may experience mild fatigue or possible nausea as the most common side effects but am happy to say I feel totally normal with no side effects at this time. I take the pills daily but do not do the 2 infusions again for 3 more weeks. If nothing notable changes I post an update after the next set of infusions.
Community Member
8 days agoI guess it took some time for the medication to get into my system. For the last 2 days I definitely feel different. My primary issue is what could be described as fatigue or malaise. My Ames and shoulders feel like I have been surf casting for 8 straight hours and my head feels heavy. Based on what I have heard from other cancer patients my symptoms would be considered mild and definitely something I can deal with. I have no idea if this is something to expect long term or whether my body will learn to tolerate it.
Community Member
3 days agoIt’s has been a week and the side effects are consistent. BC powder helps significantly but with only 1 kidney not something I should take. Tylenol has never worked for me but does help a little but definitely not a long term solution. The trial coordinator stated some patients acclimate to the drugs and others don’t. I guess time will tell. I can say with confidence that friends that have undergone other cancer treatments have had it far worse than I do. 2 more weeks until my next set of infusions.
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