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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 12, 2023
In reply to @ronsale "I still have not decided on total nephrectomy being almost 82 and not sure of how..." + (show)
@ronsale

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?

Jump to this post

@ronsale, it can be hard to know which treatment you would tolerate best. I would ask many questions of both the surgeon and the oncologist so you can get answers specific to your medical history and current health status as well as age consideration.
- What are the benefits of each treatment?
- What are the side effects?
- Do I have any current conditions that make one treatment more suited to me than the other?
- How is recovery from a nephrectomy in my age group with my health status?
- Keytruda can cause severe side effects in some people. What do you do if I experience side effects that I cannot tolerate?

Keytruda is an effective treatment for many different cancer types. You can find a number of discussions dedicated to Keytruda by using the search. See the search results here: https://connect.mayoclinic.org/search/discussions/?search=Keytruda

In these discussions, you'll find members who had to stop treatment after the first dose and another who ran a marathon after completing a full course of treatment. That's why I suggest talking to your cancer team to learn as much as you can about risks and benefits tailored to you. They don't have a crystal ball of course, but they can guide an informed decision.

Do you have any other medical conditions that need to be considered in your decision?

REPLY
2 replies
ronsale | @ronsale | Dec 12, 2023
In reply to @colleenyoung "@ronsale, it can be hard to know which treatment you would tolerate best. I would ask..." + (show)
@colleenyoung

@ronsale, it can be hard to know which treatment you would tolerate best. I would ask many questions of both the surgeon and the oncologist so you can get answers specific to your medical history and current health status as well as age consideration.
- What are the benefits of each treatment?
- What are the side effects?
- Do I have any current conditions that make one treatment more suited to me than the other?
- How is recovery from a nephrectomy in my age group with my health status?
- Keytruda can cause severe side effects in some people. What do you do if I experience side effects that I cannot tolerate?

Keytruda is an effective treatment for many different cancer types. You can find a number of discussions dedicated to Keytruda by using the search. See the search results here: https://connect.mayoclinic.org/search/discussions/?search=Keytruda

In these discussions, you'll find members who had to stop treatment after the first dose and another who ran a marathon after completing a full course of treatment. That's why I suggest talking to your cancer team to learn as much as you can about risks and benefits tailored to you. They don't have a crystal ball of course, but they can guide an informed decision.

Do you have any other medical conditions that need to be considered in your decision?

Jump to this post

Thanks.

REPLY
dougr19 | @dougr19 | Dec 12, 2023
In reply to @clb613 "Hi @koke , I'm new to this. I was diagnosed just before Thanksgiving. I have stage..." + (show)
@clb613

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.

Jump to this post

We all have differing journeys. One has this treatment and someone else has something different. Surgery, no surgery, chemo, no chemo. The pros, the cons. How in the world do you know what to do? You are correct “so many emotions.” I have heard, but never knew until now, what living moment to moment really meant. Each day brings new feelings. I so appreciate “lbrockme” words “I get it”. We all get it, that is what makes this site so meaningful. My prayer our collective prayers for healing, both emotional and physical are with each other. I feel the power of wisdom, help and understanding in each of you.
Blessings.

REPLY
ronsale | @ronsale | Dec 13, 2023
In reply to @colleenyoung "@ronsale, it can be hard to know which treatment you would tolerate best. I would ask..." + (show)
@colleenyoung

@ronsale, it can be hard to know which treatment you would tolerate best. I would ask many questions of both the surgeon and the oncologist so you can get answers specific to your medical history and current health status as well as age consideration.
- What are the benefits of each treatment?
- What are the side effects?
- Do I have any current conditions that make one treatment more suited to me than the other?
- How is recovery from a nephrectomy in my age group with my health status?
- Keytruda can cause severe side effects in some people. What do you do if I experience side effects that I cannot tolerate?

Keytruda is an effective treatment for many different cancer types. You can find a number of discussions dedicated to Keytruda by using the search. See the search results here: https://connect.mayoclinic.org/search/discussions/?search=Keytruda

In these discussions, you'll find members who had to stop treatment after the first dose and another who ran a marathon after completing a full course of treatment. That's why I suggest talking to your cancer team to learn as much as you can about risks and benefits tailored to you. They don't have a crystal ball of course, but they can guide an informed decision.

Do you have any other medical conditions that need to be considered in your decision?

Jump to this post

I don't know if this is significant in cancer treatment, but I do have severe osteoporosis; also, severe shoulder pain and lack of movement from arthritis.

REPLY
1 reply
dougr19 | @dougr19 | Dec 13, 2023
In reply to @paul56 "Hi Don. Just checking in and seeing how your doing? I know the thought of having..." + (show)
@paul56

Hi Don. Just checking in and seeing how your doing? I know the thought of having a kidney removed and the surgery itself can be overwhelming? It was for me. Fortunately it’s not as bad as I thought. The kidney function of the remaining kidney seems to be better than when I had two of them? Hang in there!! Any questions at all , just hauler!!

Jump to this post

It has been about four months since your surgery, Paul 56, how are you doing? I am scheduled for surgery on January 12 for total kidney removal. Constantly worried about surgery and the post surgical recovery. I am working out everyday in hopes of an improved recovery. Thank you for your courage. Blessings.

REPLY
drmarci | @drmarci | Dec 16, 2023

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?

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 17, 2023
In reply to @ronsale "I don't know if this is significant in cancer treatment, but I do have severe osteoporosis;..." + (show)
@ronsale

I don't know if this is significant in cancer treatment, but I do have severe osteoporosis; also, severe shoulder pain and lack of movement from arthritis.

Jump to this post

Your cancer team will take into consideration any existing conditions when suggesting treatment options. They should know about your having severe osteoporosis and some cancer treatments can effect bone health. This is true in hormone-related treatments that are commonly used for breast cancer and prostate cancer for example. I'm not sure if kidney cancer treatments effect bone health. It's a good question to ask.

REPLY
sav1 | @sav1 | Dec 17, 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?

Jump to this post

Walking if you can and drink lots of water. I too have kidney cancer and they are doing a nephrectomy in March and that was the advice I was given best of luck with your treatment

REPLY
sav1 | @sav1 | Dec 17, 2023

I have rcc kidney cancer and being operated on in March the operation is done with robotics and they said if kidney doesn’t start to bleed it’s one day in hospital and 6 weeks rest

REPLY
koke | @koke | Dec 17, 2023

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:)

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