Want to connect with kidney cancer patients

Immunotherapy has been working for me. I just passed two years this months on Opdivo and Cabometryx, and seem to be worlking as the cancer cells are shrinking. However, I firmly believe that you can say that the cancer is "gone", as it can pop up somewhere else at any time.
I did get good news today, as my oncologist, who told me that anti-cancer immunotherapy normally drops off after two years, and mine would end in July, relented and told me that we can continue with what is working.
Good sense from Cleveland Clinic. Fight, Fight, Fight... Never give up...

Five years ago, when I was 67 my left kidney was removed. The tumor was the size of a football and my diagnosis was stage 3 kidney cancer. I was a body builder at the time and in excellent health. I stayed in the hospital a week, in bed for two weeks and mostly in bed for two more weeks. My pain level ranged between 4-8. The initial pain from surgery was worse than giving birth😅. Morphine drips make it all possible. I still have an abdominal muscle that “catches” and my left abs are weaker. The right side of my body compensates for that weakness and my shoulder to my ankle ache if I’m not careful to stretch and exercise. As you know, it is a commitment to constant self care. When I have gas from chemotherapy, a small part of my large intestine on the left is painful and an anti gas pill takes care of it. That surgery was followed by a year of a chemotherapy pill. A year ago it was determined that the cancer had metastasized, stage 4, and a lesion on my kidney was removed. I am not the body builder that I was five years ago, but after surgery I was near a bed for a week. It would have been easier if I had taken Senna-S right after surgery. The residual nerve pain lasted about a year. My pain level during that time ranged between 0 and 4 and I have a high tolerance for pain.
I followed that surgery with immunotherapy infusions (KeyTruda)and Inlyta for half-a-year until my immune system attacked my liver. I am still using prednisone to counteract that destruction. I have been taking Lenvima and Everolimus the last five months and the other lesions are shrinking or staying the same. When I can keep the chemotherapy side affects to a minimum, life is good and some days, wonderful . I understand your concerns about surgery and your decision not to do chemo. The “quality/quantity of life decisions” that I make as I dance a last Tango with this disease, are always focused on quality. I have learned to quickly initiate discussions with my Doc regarding chemo reductions, increased supplements, integrated medicine and chemo side affects to better support the quality of my life. It is a commitment to a roller coaster. It’s believing two contradicting theories at the same time and It is not a singular journey. I have friends and family who support me in so many ways. Because my cancer seems to be slow-growing I often wonder what my life would be like without chemo. I will want to know what you decide and how your Tango goes. Have you gotten a second opinion about removing the lesion instead of the kidney?

Thanks. No I have not gotten a second opinion. I see that when you had your kidney removed you were much younger than I am now; as I wrote before, I am 81 and last year I went through radiation therapy for prostate cancer. After the prior treatment for another cancer and all the tests I have had and my advanced age I am not sure that I want to go through something that will have a negative effect on my quality of life. I have to have the kidney stent removed in August, and I dread even that procedure which is much less radical than having a kidney removed. I feel fairly good now and enjoy each day, so I fear having to face what may happen after surgery. I guess I will see how I feel after stent is removed, but at this point I may just leave nature takes its course.

Yep. I hold you in my heart.

I recently had an abdominal CT scan with contrast, for a 7.1 x 6.5 x 6.5cm mass. The CT scan report states:
IMPRESSION:
1. There is a large mass in the lower pole of the left kidney. This has the typical appearance of a renal cell carcinoma.
2. Interval decrease in size of the nodule in the left lower lobe.
3. Dilatation of the common common bile duct with abrupt transition in the head of the pancreas. Further evaluation is recommended.
4. Additional findings as described above.

Not sure if that is a diagnosis or does a specialist have to make that diagnosis?

Just had an abdominal ct scan with iv contrast in a 7cm mass, radiologist said it has characteristics consistent with rcc. Not sure if that is a diagnosis or not. There is a mass on ny left lung too, along with 2 small masses in my liver. Idk what to think or believe.

Based on my experience, I had a biopsy which confirmed RCC. Then I had my right kidney removed about 5/6 weeks later.

My name is ron the farmer and im her e because of Gods grace I was diagnosed renal cell carcinomas in my kidney 75% was a blob I have been taking 200mil of keytruda every 3 weeks and everyday I take lenvima 20mill I have been training eating right two in care of my add who is 84.so aftern8 months I feel great in getting some of the strength back I use to have.i feel like the cancer is gone?

Was the affected kidney removed?

Thank you for sharing. I get a CT scan every 3 months to ‘see’ what is happening with my kidney cancer that spread to a lymph node attached to my lung. Last scan determined I did ‘respond’ to drugs and the lymph node is back to normal size. This does not confirm the cancer is gone. I continue to take cabometyx daily (target drug) and get an IV immunotherapy drug every 4 weeks. I will get a CT scan again in September.
I believe I am cancer free by Gods grace and the drugs. I feel very very blessed and live each day with a smile and a prayer!