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Stage 4 kidney cancer: Treatment stopped, not sure what's next
I just received some bad news Friday.
After my 3rd immunotherapy treatment started to have really bad headaches. They started on a Sunday and were 24/7 for 8 days straight. These are the worst headaches I have ever had. They affected my sleep and vision. I had to start wearing sunglass all day at work because the light made it worse. After 8 days I was put on a regiment of light steroids that help at first but as it was cut back the headaches came back.
Found out Friday I have brain swelling and had to stop treatment and was put on prednisone 10 mg.
I was told I might have to stop the immunotherapy all together now and try something different when the swelling go's down. I may have just wasted 10 weeks of treatment and not sure what's is next.
this has taken a toll on me and my family. Everything seemed to be going so well but now there is a hold on everything, but the headaches and vision issues are just unbearable as well as not safe.
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What degree of kidney cancer do you have? And what immunotherapy drug are you getting in what dosage and frequency? Have you had any other side effects from the first two cycles?
@ebdent88, you can read some of Ron's story in this discussion:
- Stage 4 kidney cancer: What treatments help? https://connect.mayoclinic.org/discussion/just-diagnosed-with-kidney-cancer/
@ronc531, I'm sorry that you and your family received such tough news on Friday. This is hard. The good news is that your team is monitoring your closely and don't want you to suffer unnecessarily if the treatment is either not working or is causing unwanted side effects that affect your quality of life.
You mention that you feel like the past 10 weeks have been wasted. That may not be true. Is it possible that the treatment had some effect, but that now the toxicity causing swelling and inflammation became too much. That is a question I would ask your team.
I look forward to hearing what options will be available for you. Hopefully the treatments will be available to you locally in Alaska.
For the moment, Ron, I send you and your family and gentle embrace virtually. Has the prednisone started to help with the headaches, vision and brain swelling?
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1 ReactionI have never been told what stage of kidney I have, but I have been on Keytruda for about 14 months. I have had 14 infusions, and although I have not had the serious side effects that you had, I am currently taking a break from treatment because of very severe skin rash and lesions. I am scheduled to begin again the second week of June, but I am struggling whether to continue treatment since I don't want to put up with its side effects of the rash and also other side effects may arise. My last MRI showed no spread of the cancer and slight reduction of the malignant kidney lesion. I really can sympathize with the struggle you are also having as to the next step. Because of my age, 83, I have ruled out kidney removal and I do not want to have chemo or hormone therapy because of their extreme side effects. I cannot give you advice but know that you have the support of others who know the difficulties of dealing with this terrible disease. I can only say to try to remain as positive as you can and enjoy the simple things that make life a wonderful thing to experience each day.
Had to go to the emergency room Sunday, was in terrible shape.
Testing shows I had phmonya and meningitis.
I've been in the hospital since Sunday and hope to get out Wednesday or Thursday. Waiting for some results back from the Mayo clinic.
Been a really tough 3 weeks
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1 ReactionHi Ron. Have you heard from Mayo? I hope you’re doing better.