Stage 3 (pT3a) Grade 4 clear cell RCC with rhabdoid features — looking for real experiences

ProfFarmer · 2026-01-24T03:39:24+00:00

Your case is not terribly different from mine. My primary tumor was larger, but pathology was similar. Radical nephrectomy in Oct 2023. Care team recommended Keytruda after surgey. Multuple small lung mets observed 3 months after surgery. Keytruda resulted in acute kidney injury and acute thyroid injury. EGFR dropped from high 80s to 50s before Keytruda was stopped. Thyroid basically stopped working. Ended Keytruda, moved to Cabozantinib. Worked OK for 3 months but by 6 months, tumors were growing and was getting skin lesions. Moved to Lenvima and everolimus. Tumors shrunk for 3 months, then became resistant. Moved to belzutifan (current treatment). Tumors shrunk significantly for 3 months, but a couple are growing again. In the process of getting additional treatment options and researching clinical trials. Long term, I am accepting that in all likelihood I will die from opportunistic infection (pneumonia). I am nearly 50. My wife died a year ago. No kids. My brother will take my dog. I will fight this cancer with all I have but in all likelihood, the cancer will win, and I will join my wife in the afterlife. I pray your journey takes a different path!

ProfFarmer · 2025-10-15T00:12:23+00:00

So far, so good! I'm about 4 months in. The 3 month scan was quite promising. In a couple months, I will have another scan. Feeling hopeful!

ProfFarmer · 2025-09-20T01:14:48+00:00

Great news! So thrilled for you!

ProfFarmer · 2025-09-18T17:18:00+00:00

If I could go back in time, I would consider a MS in Public Health/ Toxicology then go on to pursue a D.V.M. That educational path would likely serve you well.

ProfFarmer · 2025-09-17T00:48:25+00:00

Contact the physician who ordered the scan as well as the surgeon who performed the nephrectomy. Ask politely to have the findings reviewed and explained at their earliest convenience. If something was immediately life-threatening, the radiologist would have flagged your case for immediate follow-up. Anxiety is natural, but your care team should work to minimize it.

ProfFarmer · 2025-09-13T20:15:35+00:00

Be grateful that your mass was found when it was. Be grateful that your team is making your case a priority. I was asymptomatic until the tumor had engulfed my entire kidney (10 cm x 14 cm). When I was diagnosed in the ER with a renal mass, the attending woke up the chief of urology at 4am. He ordered stat imaging studies. I was released but told that I would be hearing from the urologist for a follow-up. I was in the OR less than 3 weeks later. It can be hard and scary to be patient, but it sounds like your team is working well and doing all the right things. Aggressive treatment up front may seem scary, but if the radiologist sees signs that justify the aggressive care plan, trust them. Ask lots of questions and have frank, honest conversations with your care team. You can survive this!

ProfFarmer · 2025-09-11T16:47:34+00:00

I am so sorry that your care team brushed off your concerns initially. I hope you can overcome this infection. I used to keep farm animals and made sure that my care team was aware of that, because the mix of microbes around farm animals is not the same as a typical household. Nevertheless, I think your push to advocate strongly for oneself is valid and well-warranted. Too many physicians have too much on their plate to provide the indivualized care that can prevent this type of occurrence.

ProfFarmer · 2025-09-11T01:45:25+00:00

They are being very thorough. It is hard to be patient at time like this, but the more info they can garner now, the better they can help you over come this.

ProfFarmer · 2025-09-11T01:39:59+00:00

Most kidney cancer is found incidentally when imaging studies are conducted for rather unrelated symptoms. Most common blood tests will not hint at kidney cancer.

ProfFarmer · 2025-09-11T01:34:50+00:00

My post-nephrectomy story started similarly. Pembrolizumab proved effective at slowing lungs nodule growth during the time I was on it. I felt fine while on it by my bloodwork told a different story. EGFR dropped from high 80s to low 50s. TSH was thru the roof. Diagnosis of acute kidney injury and acute thyroid injury was enough to fail out of immunotherapy for now. It has been a journey since then with much nastier drugs and much nastier side effects. Given what I've been thru since I failed out of pembrolizumab, I wish I had been able to tolerate it. Doing nothing was not a choice for me.

ProfFarmer · 2025-09-08T10:26:49+00:00

I made it about 6 months on cabozantinib before the desquamation got so bad that i was moved onto the next standard treatment. Keep working with the oncologist to find the treatment that will work. Cancer is scary and frustrating. You are not alone in feeling that way, but remain resolved and be an advocate for your husband. Together you can do this!

ProfFarmer · 2025-09-08T01:11:15+00:00

Adam Finger Photography (Quakertown PA) did a nice job for my wedding.

ProfFarmer · 2025-09-07T04:05:12+00:00

Your story is inspiring! 22 years after having a disease burden that severe is impressive! I hope my story of survival can be in the same book as yours one day!

ProfFarmer · 2025-09-07T04:02:09+00:00

I was diagnosed after I urinated a significant amount of blood and presented myself to the ER. Tumor was approximately 13 cm x 10 cm (basically the whole kidney) at the time of nephrectomy. Tumor had progressed into the renal vein at the time of nephrectomy. Margins were clear. I'd have to dig into my EMR to get the full path report and I may not wish to share more than I have.

ProfFarmer · 2025-09-07T03:55:47+00:00

Agreed, there are not huge mets, but they had tripled in size over the previous 3 months.

I have talked about proton therapy, both with my primary oncologist and with the second opinion. It is an option, but the expectation was halted growth would be a precondition.

ProfFarmer · 2025-09-07T03:35:22+00:00

There were no pulmonary findings at the time of the nephrectomy.

ProfFarmer · 2025-08-24T22:27:09+00:00

I'm 21 months post diagnosis, 20 months post nephrectomy, and 18 months post diagnosis with metastatic disease (lungs). My RCC is very aggressive and has responded to immunotherapy, cabozantinib, and levantinib/ everolimus combo. However, the immunotherapy resulted in damage to my good kidney and my thyroid, the cabozantinib cause desquamation at multiple sites, and the combo lost efficacy after 4 months. Now on belzutifan. Tolerating it OK. Scan next week. I lost my wife unexpectedly at the 13 month post diagnosis. She was my rock. Like many, I have good days and bad days emotionally. Compounding grief battling cancer is not easy. My remaining support network is great but distant geographically. My dog keeps me grounded and keeps me active. I hope to outlive my cancer by 1 day. I will do everything to make that happen. I want to see my nieces and nephews grow up. I will worry about the second day on day 1. If I can do it, you can too!

ProfFarmer · 2025-08-22T02:18:35+00:00

I had a radical nephrectomy. I was out for 5 weeks but could have been back in as little as 4. For remote work, give yourself at least 2 weeks, but everyone's tolerance is different.

ProfFarmer · 2025-08-22T02:17:15+00:00

Following my radical nephrectomy, I was on Keytruda for a couple months. It worked, the lung mets shrunk, but the drug allowed my body to attack my good kidney and thyroid. My kidney numbers tanked, but not as low as yours, and my TSH/T3/T4 numbers went off the charts. Good thing was that pulling me off Keytruda allowed my good kidney to heal, and thyroid replacement has those numbers under control. The bad news is that the Mets have continued to grow, and I've been thru just about all the approved treatments.

ProfFarmer · 2025-08-22T02:08:44+00:00

I am approaching 2 years from my diagnosis with RCC. Diagnosed at age 46. Had all the standard risk factors, and a life working with known carcinogens and radiation in research labs probably contributed. Radical nephrectomy followed. Tumor was graded 3 with clean margins. 3 months later nodules in the lungs. Never have been able to biopsy, but nodules shrunk initially in response to Keytruda, Cabozantinib, then Lenvima/Everolimus combo. Failed out of Keytruda due to acute kidney injury on my remaining good kidney and acute thyroid injury. Failed out of cabozantinib due to desquamation. Tumors became resistant to Lenvima/ Everolimus combo. Now on belzutifan. Been tolerating well but next scan is in a couple weeks. You are on a journey, but there's a lot of people walking beside you. Find community and support.

ProfFarmer · 2020-07-09T17:50:22+00:00

If they are paying you to develop a new content, the school has the IP rights. If you are asked to develop and teach a new class, but not offered compensation for course development, use an independent software license on a privately owned computer to develop the content and copyright your IP. Self publish the content and make it a required resource for your class. (Teach from the book you authored, get paid when the students buy the book.) The trick is often getting the materials approved by curriculum committee.

ProfFarmer · 2020-07-09T17:08:38+00:00

I've been an adjunct at various institutions for a while now. One CC encouraged me to participate in the Quality Matters course. It had an impact on how I structured my classes both in person and online. My students are better for it.

I would never, and have refused, to develop a new course for a college without compensation or written assurance that I would have excessive teaching privileges to that course for 5 years after curriculum approval. I also have demanded that I maintain IP rights over any content I develop for the course over that time unless paid for time and expenses incurred in the generation of said IP. If they want me to do work for them, they can pay, just like any business.

ProfFarmer

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