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

Hi. I am now 74 years old and was 67 when cancer came to visit. Cleveland Clinic, after the surgery and the follow-up problems, has had me on Opdivo and Cabometryx for the last 2 plus years and the cancer continues to shrink.
After the kidney surgery, renal cancer cells migrated to my lungs and then to my spleen and pancreas, so that is where the emphasis is now.
Cancer never sleeps so that is something to be aware of.
I was about 250 and lost 60 lbs during the surgery and the after-effects, and am around 215-220, which is a better weight for me.
Sounds like you are on your way, but beware and fight to continue your treatment as long possible, to ensure that all cancer cells that are hiding are impacted...

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Cool bro blessings to u 250 wow that's pretty healthy u give me hope

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A lot of my friends tell me that they are praying for me and I always thank them. Regardless of their religion, there is a lot of power in prayer. My wife of 44yrs also takes pretty good care of me, and I stay very active with softball and working around the house most every day.
Stay positive and continue your active life. Keep the prayers coming too, as it is the most powerful, non-physical or medical thing, that you can do.

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@rsd2

Hi. I have had 2 PN. I was diagnosed with bi lateral kc in March of 2023. Tumors in both kidneys. The tumors were not similar in mass and location. Had two separate procedures one in May and one last week. Currently recovering and doing great.

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@rsd2, I wanted to make sure you were welcomed. I hope your recovery continues to go well. Will you have additional treatments after surgery? How are you doing?

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@colleenyoung

@rsd2, I wanted to make sure you were welcomed. I hope your recovery continues to go well. Will you have additional treatments after surgery? How are you doing?

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Thank you! This sight is very helpful reading everyone’s story.
I had a ‘port’ put in a week ago since getting IV’s continued to be more difficult.
I will continue with my drug regiment till March. At that time, my dr and I will discuss options as long as nothing ‘has shown up’.
I continue to have side effects that are ok but as time passes, the side effect of ‘needing to be very close to bathrooms’ is worsening.
If anyone has found a diet and/or foods they would recommend, that would be helpful.
Koke

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@colleenyoung

@rsd2, I wanted to make sure you were welcomed. I hope your recovery continues to go well. Will you have additional treatments after surgery? How are you doing?

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Good Morning.
I am doing great. Recovery is moving along nicely. Currently, I am in no other treatment. Follow up appointment is Nov 14. Will begin working with oncology to monitor moving forward.

Thank you

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@rsd2

Good Morning.
I am doing great. Recovery is moving along nicely. Currently, I am in no other treatment. Follow up appointment is Nov 14. Will begin working with oncology to monitor moving forward.

Thank you

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Good Morning To All,
I am traveling around the country telling my brothers what is going on, with my RCC diagnosis. I was in Maine, now in Virginia, I will be going to California next to see my oldest brother who is doing well recovering from prostate CA. Koke, you are constantly in my thoughts and prayers. You were one of the first respondents when I first came to this website. It was so helpful to know someone was listening. At that time no one in my family knew what was happening. Awaiting second and possibly third opinions on my course of treatment.
Blessings.

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@sav1

Many thanks for your reply and advice I hope the operation was successful I don’t know when there operating they have been watching it for a year now it’s a very anxious time

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Touching base...hoping your living every moment ...present in each moment!

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Diagnosed with mass on lower lobe of right kidney via a general back cat scan image. Would like to discuss ultrasound versus cat scan with and w/o contrast and MRI for diagnosis.

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@dougr19

Good Morning To All,
I am traveling around the country telling my brothers what is going on, with my RCC diagnosis. I was in Maine, now in Virginia, I will be going to California next to see my oldest brother who is doing well recovering from prostate CA. Koke, you are constantly in my thoughts and prayers. You were one of the first respondents when I first came to this website. It was so helpful to know someone was listening. At that time no one in my family knew what was happening. Awaiting second and possibly third opinions on my course of treatment.
Blessings.

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Thank you so much. Our challenges are ours and as much as my friends and family have provided wonderful support, connecting with others who have the same cancer inside of them has helped me tremendously. I know you understand! So thank you again for such kind heartfelt words…yours are as meaningful to me as mine are to you. I go day by day and often find myself not wanting to share the results as I watch my loved ones be positive yet scared and worried. Praying for us all…day by day! And we all have today! Koke

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@stonejax

Diagnosed with mass on lower lobe of right kidney via a general back cat scan image. Would like to discuss ultrasound versus cat scan with and w/o contrast and MRI for diagnosis.

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After it was confirmed by having a biopsy of the mass in my kidney that it was cancer and subsequently having my kidney removed, I continue to have a CT scan with contrast every three months to see if the cancer has spread. I have learned that CT scans are the best way to see changes in the kidney and the area it most likely spreads (lungs). When they thought they saw something on my liver, I had an MRI done with contrast. It seems to me that depending on where and what they are looking for, depends on the scan they order. X-rays are not definitive compared to a CT. This is simply my understanding.

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