1. < Kidney Cancer

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.

khunnewell | @khunnewell | Dec 31, 2023
In reply to @dougr19 "Counting the days. Unless something changes I will have radical nephrectomy for RCC on January 12...." + (show)
@dougr19

Counting the days. Unless something changes I will have radical nephrectomy for RCC on January 12. I have been working out 4-5 days a week, but I have been an “exerciser” my entire adult life. If you are new to exercise than begin slowly. Do not overdo any exercise. I do not worry for myself. If something were to happen to me I will not even know. However, I worry constantly about my family and their future. Blessings.

Jump to this post

It feels like getting scooped out with an ice cream scoop. God bless...

REPLY
khunnewell | @khunnewell | Dec 31, 2023

Kidney cancer is the crazy aunt of cancer. It apparently manifests in weird and unusual ways. Mine chewed through my right humerus. April 2020 - right at the start of Covid. I got my arm "rodded" and radiated. They started me on Keytruda. I had a reaction and got pneumonitis after a few weeks and had to go to the emergency room at the height of covid. Fun! I was put on Cabometyx - we dinked around with dosages - I tolerate a 40 mg dose, which I still take. After the vaccine came out - I got immunized and then had my cancerous left kidney removed in May 2021. It was a laproscopic procedure, but I have to be honest - I felt like I had been scooped out with an ice cream scooper. After my recovery my routine became: Cabometyx 40 mg every day / monthly blood draws and a shot of Xchiva. I get stuck in the tube for a bone and CAT scan every 6 month. The last scan (6/23) showed some inactive tumors on my arm, but I it wasn't bad news, I just got scanned again the day after Christmas. I get the results on Friday. The thing about cancer that people don't get is the overhanging dread all the time waiting for the results. I work full time and it helps to keep my mind off my predicament. But when I get some down time the negative thoughts start going. I hope my story helps somebody. I would love to hear from other folks. Misery loves company.

REPLY
2 replies
tbchaney | @tbchaney | Jan 4 3:25pm

I was diagnosed with kidney cancer in May of 2023 surgery in June. Currently in undergoing immunotherapy as well as oral daily meds.
First time reaching out to another who has the same. Some days are tougher than others.
My name is Brent. I am 51 yrs old.
Hope you are doing ok? You aren’t alone !
BC

REPLY
2 replies
ronsale | @ronsale | Jan 5 11:14am
In reply to @khunnewell "Kidney cancer is the crazy aunt of cancer. It apparently manifests in weird and unusual ways...." + (show)
@khunnewell

Kidney cancer is the crazy aunt of cancer. It apparently manifests in weird and unusual ways. Mine chewed through my right humerus. April 2020 - right at the start of Covid. I got my arm "rodded" and radiated. They started me on Keytruda. I had a reaction and got pneumonitis after a few weeks and had to go to the emergency room at the height of covid. Fun! I was put on Cabometyx - we dinked around with dosages - I tolerate a 40 mg dose, which I still take. After the vaccine came out - I got immunized and then had my cancerous left kidney removed in May 2021. It was a laproscopic procedure, but I have to be honest - I felt like I had been scooped out with an ice cream scooper. After my recovery my routine became: Cabometyx 40 mg every day / monthly blood draws and a shot of Xchiva. I get stuck in the tube for a bone and CAT scan every 6 month. The last scan (6/23) showed some inactive tumors on my arm, but I it wasn't bad news, I just got scanned again the day after Christmas. I get the results on Friday. The thing about cancer that people don't get is the overhanging dread all the time waiting for the results. I work full time and it helps to keep my mind off my predicament. But when I get some down time the negative thoughts start going. I hope my story helps somebody. I would love to hear from other folks. Misery loves company.

Jump to this post

Thanks for the information. I was diagnosed with kidney cancer in April of last year. The doctor said that I needed a radical nephrectomy of the effected kidney. Since I am 81 soon to be 82, I have not had it done because at my age I don't know if I would survive and how severe the recovery would be. The urologist referred me to an oncologist who wants to put me on Keytruda. I still have not decided because it seems that Keytruda can have some bad side effects. My last CT scan last September showed that the cancer has not spread, but it did show small nodules in the lungs which urologist was not concerned about. Next scan is in three weeks. I struggle with what is the best course to take at my age; I feel good now and take it a day at a time. I enjoy walking every day and am able to do all of the normal tasks to be done, and at my age I don't know if I could take long recovery time and bad side effects when I don't a lot of years left. It's the most difficult decision of my life. I should also say that this is my second round dealing with cancer; I had 42 radiation treatments for prostate cancer that ended in early 2022.

REPLY
dougr19 | @dougr19 | Jan 6 10:41am
In reply to @stonejax "I now have an appointment at U of Penn hospital in Philadelphia for a cat scan..." + (show)
@stonejax

I now have an appointment at U of Penn hospital in Philadelphia for a cat scan and to speak with an oncologist for January 2 (cat scan) and 3 (oncologist). So I am following your suggestion.

After reading articles on kidney cancer, I understand that there is an operation that can spare a portion of an impacted kidney. I suspect that you were found to have a greater than 7 cm size cancer mass and so the entire kidney had to be removed.

I have read some individuals are weak after their kidney is removed. But I believe that age is a factor in the degree of weakness felt. I am 73 but am active, play tennis and ski. I suspect that I may have to give up active sports.

I hope you are young and active after kidney removal.

Thank you for confirming that I am following the correct course of treatment.

Jump to this post

How did your appointment go? Have you developed a plan? I am also active in sports, work out 4-5 days a week, have a horse to take care of and I plan to go back to every one of those things, “Lord willin and the creek don’t rise.” I have my kidney removed on January 12.
Blessings.
Doug

REPLY
dougr19 | @dougr19 | Jan 6 10:55am
In reply to @tbchaney "I was diagnosed with kidney cancer in May of 2023 surgery in June. Currently in undergoing..." + (show)
@tbchaney

I was diagnosed with kidney cancer in May of 2023 surgery in June. Currently in undergoing immunotherapy as well as oral daily meds.
First time reaching out to another who has the same. Some days are tougher than others.
My name is Brent. I am 51 yrs old.
Hope you are doing ok? You aren’t alone !
BC

Jump to this post

You are not alone Brent. My prayers and I am sure the prayers of others are with you. If you are inclined to pray I would ask for your prayers. I am having my kidney removed next week, January 12. Blessings to you.
Doug

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 9 5:06pm
In reply to @khunnewell "Kidney cancer is the crazy aunt of cancer. It apparently manifests in weird and unusual ways...." + (show)
@khunnewell

Kidney cancer is the crazy aunt of cancer. It apparently manifests in weird and unusual ways. Mine chewed through my right humerus. April 2020 - right at the start of Covid. I got my arm "rodded" and radiated. They started me on Keytruda. I had a reaction and got pneumonitis after a few weeks and had to go to the emergency room at the height of covid. Fun! I was put on Cabometyx - we dinked around with dosages - I tolerate a 40 mg dose, which I still take. After the vaccine came out - I got immunized and then had my cancerous left kidney removed in May 2021. It was a laproscopic procedure, but I have to be honest - I felt like I had been scooped out with an ice cream scooper. After my recovery my routine became: Cabometyx 40 mg every day / monthly blood draws and a shot of Xchiva. I get stuck in the tube for a bone and CAT scan every 6 month. The last scan (6/23) showed some inactive tumors on my arm, but I it wasn't bad news, I just got scanned again the day after Christmas. I get the results on Friday. The thing about cancer that people don't get is the overhanging dread all the time waiting for the results. I work full time and it helps to keep my mind off my predicament. But when I get some down time the negative thoughts start going. I hope my story helps somebody. I would love to hear from other folks. Misery loves company.

Jump to this post

@khunnewell, waiting for results is dreadful. But I believe you've got the results of your latest scans now. What did you learn? What are next steps for you?

REPLY
dougr19 | @dougr19 | Jan 11 3:03pm

Surgery, tomorrow January 12 in Seattle, WA. Radical nephrectomy.
Diagnosed September 29.
Three surgical opinions
His will be done.
Blessings.
Doug

REPLY
2 replies
koke | @koke | Jan 11 5:56pm
In reply to @dougr19 "Surgery, tomorrow January 12 in Seattle, WA. Radical nephrectomy. Diagnosed September 29. Three surgical opinions His..." + (show)
@dougr19

Surgery, tomorrow January 12 in Seattle, WA. Radical nephrectomy.
Diagnosed September 29.
Three surgical opinions
His will be done.
Blessings.
Doug

Jump to this post

Sending prayers!

REPLY
View MoreView Less
Please sign in or register to post a reply.