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.

buckeyeveteran | @buckeyeveteran | Dec 31, 2023
In reply to @koke "Hi! I take a chemo drug daily and immunotherapy every 4 weeks. Did you ever take..." + (show)
@koke

Hi! I take a chemo drug daily and immunotherapy every 4 weeks. Did you ever take chemo drug? Do you still have immunotherapy? If not, how long did you and when did you stop?

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I take a Cabometryx tablet every evening and have an Opdivo infusion each month. No chemo drug treatment, just this immunotherapy that I have taken for the last 2 1/2 years (I had some problems from the surgery itself that delayed starting any real cancer treatment).

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buckeyeveteran | @buckeyeveteran | Dec 31, 2023
In reply to @koke "Hi! I take a chemo drug daily and immunotherapy every 4 weeks. Did you ever take..." + (show)
@koke

Hi! I take a chemo drug daily and immunotherapy every 4 weeks. Did you ever take chemo drug? Do you still have immunotherapy? If not, how long did you and when did you stop?

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I take Cabometryx every night and receive an Opdivo infusion once a month at Cleveland Clinic. Other than that, my life is just the same as before.
There are a few side effects (relatively minor), but none that would dissuade me continuing the treatment. Normally doctors limit Opdivo to 2 years due to concerns about the possibility of side-effects, but I convinced them that we should continue the same treatments, as they were working...
It is important to have doctors whom you trust and will listen to your desires for treatment - It is your body!
Good Luck....

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Lynne Marie | @lbrockme | Dec 31, 2023
In reply to @drmarci "Having my port placed tomorrow, Echo next week, chemo begins Jan. 3 and 4. 12 weeks..." + (show)
@drmarci

Having my port placed tomorrow, Echo next week, chemo begins Jan. 3 and 4. 12 weeks of chemo, 1 month off, then surgery. This will be followed by one year of immune therapy. I think there is way more I don't know. Don't know anything nutritionally yet. Best news for stage IV is "curative intent". I just hope I'm as tough as I think I am!

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YOUVE GOT THIS ! ! Praying for strength and healing !

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koke | @koke | Dec 31, 2023
In reply to @buckeyeveteran "I had my kidney removed (stage 3 cancer) June 2017, and have had no problems with..." + (show)
@buckeyeveteran

I had my kidney removed (stage 3 cancer) June 2017, and have had no problems with one kidney since. Subsequent immunotherapy has shrunk the post surgery "spots" that popped up in the lungs, then the spleen and pancreas and is now almost all gone (although I believe that cancer is never "all gone". Good Luck in whatever you decide...

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Hi! I take a chemo drug daily and immunotherapy every 4 weeks. Did you ever take chemo drug? Do you still have immunotherapy? If not, how long did you and when did you stop?

REPLY
2 replies
buckeyeveteran | @buckeyeveteran | Dec 30, 2023
In reply to @dougr19 "I had my appointment with urologist on Tuesday. He recommended total nephrectomy based on location of..." + (show)
@dougr19

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.

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I had my kidney removed (stage 3 cancer) June 2017, and have had no problems with one kidney since. Subsequent immunotherapy has shrunk the post surgery "spots" that popped up in the lungs, then the spleen and pancreas and is now almost all gone (although I believe that cancer is never "all gone". Good Luck in whatever you decide...

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1 reply
drmarci | @drmarci | Dec 21, 2023
In reply to @colleenyoung "How are you doing, @drmarci? I know you probably received a lot of information at your..." + (show)
@colleenyoung

How are you doing, @drmarci? I know you probably received a lot of information at your appointment. How are you feeling about the treatment plan?

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Having my port placed tomorrow, Echo next week, chemo begins Jan. 3 and 4. 12 weeks of chemo, 1 month off, then surgery. This will be followed by one year of immune therapy. I think there is way more I don't know. Don't know anything nutritionally yet. Best news for stage IV is "curative intent". I just hope I'm as tough as I think I am!

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 21, 2023
In reply to @drmarci "Tomorrow afternoon 12/19" + (show)
@drmarci

Tomorrow afternoon 12/19

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How are you doing, @drmarci? I know you probably received a lot of information at your appointment. How are you feeling about the treatment plan?

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1 reply
drmarci | @drmarci | Dec 18, 2023
In reply to @colleenyoung "Welcome, @drmarci. I agree with @sav1 to stay hydrated and physically active as you prepare for..." + (show)
@colleenyoung

Welcome, @drmarci. I agree with @sav1 to stay hydrated and physically active as you prepare for treatment. You may also be interested in joining these related discussions about urothelial cancer:

- Urothelial adenocarcinoma
https://connect.mayoclinic.org/discussion/urothelial-adenocarcinoma/
- Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?
https://connect.mayoclinic.org/discussion/diagnosed-with-high-grade-urothelial-cell-carcinoma-anyone/
I'm sure you have loads of questions looping through your mind as you wait for your treatment planning appointment. I suggest keeping pen and paper (or phone) handy and jotting them down. Naturally, keep asking questions here. There are others here who have been in your shoes.

When will you find out about the treatment you'll be getting?

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Tomorrow afternoon 12/19

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1 reply
dougr19 | @dougr19 | Dec 18, 2023
In reply to @koke "I was very scared to have my kidney removed. That was in Oct ‘22. I had..." + (show)
@koke

I was very scared to have my kidney removed. That was in Oct ‘22. I had no other health issues and was relatively fit 63 year old female. I was pretty much in bed the first week but pushed myself to get up and move about my house as much as I could. Mine also was done by robotics but still had. 5-6” incision to get kidney out!
After about 4 weeks, I was walking straight and doing a lot of routine tasks…I pray your surgery goes as well as mine did. Things do change so it’s best to take it a day at a time:)

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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.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 18, 2023
In reply to @drmarci "I have just been diagnosed with Stage 4 urothelial cancer. I will find out the specifics..." + (show)
@drmarci

I have just been diagnosed with Stage 4 urothelial cancer. I will find out the specifics next week but the plan is chemo/immunotherapy then radical nephrectomy. Is there anything I can do to prepare?

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Welcome, @drmarci. I agree with @sav1 to stay hydrated and physically active as you prepare for treatment. You may also be interested in joining these related discussions about urothelial cancer:

- Urothelial adenocarcinoma
https://connect.mayoclinic.org/discussion/urothelial-adenocarcinoma/
- Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?
https://connect.mayoclinic.org/discussion/diagnosed-with-high-grade-urothelial-cell-carcinoma-anyone/
I'm sure you have loads of questions looping through your mind as you wait for your treatment planning appointment. I suggest keeping pen and paper (or phone) handy and jotting them down. Naturally, keep asking questions here. There are others here who have been in your shoes.

When will you find out about the treatment you'll be getting?

REPLY
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