How do I start immunotherapy for metastatic kidney cancer?

Starting 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.

Today 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.

I 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.

It’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.

Thank you for the updates and working towards hope. My husband battles fatigue with Keytruda (every 3 weeks) and Lenvatinib (daily pill) since Jan 2026 for FHdRCC in lung, with a 13cm tumor (7.6cm solid cancer mass) on kidney. Onc wants to decrease the lung metastasis then do nephrectomy. Sounds like your immune system is reacting and the drugs are working.

After 2 weeks the side effects from my initial treatment has subsided which indicates that the transfusions and not the daily pills are likely the cause. One week after the infusions my white blood cell count dropped to 4000, but rebounded to 5000 after 2 weeks. So far I am satisfied with the way the treatment is working out and will have my second set of infusions in a few days.

Sat for my second round of infusions today. Because of the extra testing associated with the clinical trial this was my sixth visit in 21 days. Extra visits primarily revolved around blood tests and extra ekgs associated with the dosing of the pills I am taking. Along with the extra visits, today was another day from 8:00 to 4:00 because of the extra testing protocols and tests. The good news is I am just about clear of the extras associated with the clinical trial. I have 1 extra visit in 7 days that should be about an hour, then I only go in on the 3 week cycle for the continuing infusion. Although there has been an extra time commitment to get the trial underway, there has been nothing to cause me to regret my decision.

2 days after my second set of infusions and the side effects have started again. This time I do not have the head pressure that Inexperienced after my first set of infusions but the shoulder and arm issues have returned. It take very little effort in doing anything for my upper arms muscles to feel like I have been working out for hours. The first time this issue faded after several days so I am expecting the same this time. Overall I am very pleased with the relatively mild side effects compared to what I know other people have had to deal with.

James - my husband has similar immune response symptoms of headache, fatigue, body/shoulder aches the week following the Keytruda infusion and then the syptoms lessen. He is also on daily Lenvatinib pill. From the Trial research info - there are the known side effects (manageable but not always comfortable). The drug seems to have a high respinse rate within 3 months.