Kidney cancer patients: Let's connect and introduce yourself

Posted by koke @koke, May 2, 2023

I have stage 4 kidney cancer. Taking target and immunotherapy drugs. Would love to connect with anyone who is going through the same process or has kidney cancer!

Interested in more discussions like this? Go to the Kidney Cancer Support Group.

koke | @koke | Nov 7, 2023

In reply to @irkah "How large was the tumor and its grade?" + (show)

Oh, I can’t remember exactly….when my right kidney was entirely removed, it was 5/6” long and 4/5” wide. I’m not sure of grade? I have RCC but it is unclear and undefined….about 5% of RCC patients are this type…not too popular.
Hope this helps:)
Koke

dougr19 | @dougr19 | Dec 7, 2023

In reply to @koke "Oh, I can’t remember exactly….when my right kidney was entirely removed, it was 5/6” long and..." + (show)

I had my appointment with urologist on Tuesday. He recommended total nephrectomy based on location of mass on my kidney. Had a differing first opinion. Have third opinion on December 21. However I did schedule surgery for January 12. Just take it out. My uncle had total nephrectomy in 1991 secondary to cancer. He lived until 92. Reality of cancer is settling in. Blessings.

Lynne Marie | @lbrockme | Dec 7, 2023

In reply to @dougr19 "I had my appointment with urologist on Tuesday. He recommended total nephrectomy based on location of..." + (show)

Sending you hopeful prayers as you navigate processing all of this.

ronsale | @ronsale | Dec 8, 2023

I still have not decided on total nephrectomy being almost 82 and not sure of how recovery would be at my age; after biopsy I was diagnosed in this April of having high grade urothelial cancer of the left kidney. Urologist referred me to oncologist for possible treatment other than radical surgery. After blood test oncologist suggested Keytruda as a treatment; not a cure he said, but it can slow the cancer. Has anyone had this treatment for cancer? If so, how were the side effects?

clb613 | @clb613 | Dec 11, 2023

Hi @koke , I'm new to this. I was diagnosed just before Thanksgiving.
I have stage 4, metastatic, non-operable, RCC. A week ago I had a medi-port implanted and started immunotherapy . That evening I ended up in the hospital with sepsis. To bring my blood pressure up I received a blood transfusion and norepinephrine. I am feeling the best I have in months. I wonder how long it will last. My next immunotherapy treatment is 12/22. I'm concerned I will be sick for Christmas. My 5 year granddaughter is scared I won't be there. So many emotions.

ronsale | @ronsale | Dec 11, 2023

In reply to @clb613 "Hi @koke , I'm new to this. I was diagnosed just before Thanksgiving. I have stage..." + (show)

It's problems that you unfortunately had that make this a very difficult decision of what to do, especially at my age. It seems there is no easy solution to the curse of cancer. Thanks for sharing this.

Lynne Marie | @lbrockme | Dec 11, 2023

In reply to @clb613 "Hi @koke , I'm new to this. I was diagnosed just before Thanksgiving. I have stage..." + (show)

I am so sorry to hear how you are struggling. It sounds like you are getting top of the line care. But still the anxiety of the unknown can be daunting. I have been dx with a rare thyroid cancer, and was told on its return that it was terminal, 30 yrs ago. So much for terminal ! I
was dx with one rare form of renal cancer in my right kidney and then three months later another form in my left kidney. Both operated on and reconstructed. I have stage 4 CKD now and have had sepsis twice which affected my heart... and now have heart failure as well. I tell you all thus just to let you know I get it!

Best advice I can give from my perspective
Live you life each day. Fully and ... fully present!
Capture the good moments and give yourself grace in the hard moments.
Spend time with those you love anyway you can. Your legacy is what you are living out right now with those grandchildren. Tomorrow is not a guarantee for anyone really... it this moment we have .
Be in it! Present!
Sending you love. Prayers and big hugs

koke | @koke | Dec 11, 2023

In reply to @lbrockme "I am so sorry to hear how you are struggling. It sounds like you are getting..." + (show)

I needed to hear this right now today…my husband tells me he is done with our marriage. I have stage IV RCC and his prostate cancer has returned. Do you think he is angry? I forgot about my cancer…I need to remember to live each day and forget about his displaced anger…i so needed your words! Thank you so much🙏