My IKCS Recap

This is a guest post by Joel Stern, stage 4 kidney cancer, member of the KCA’s Board of Directors.

I just returned from the KCA Symposium – the 2024 International Kidney Cancer Symposium (IKCS): North America in Louisville, Kentucky. The following is my “data dump” of key thoughts/observations that I came away with. Please note that these comments are my understanding of what I heard and may not be precise; and even the doctors I heard it from on panels may not be correct, but I hope some of it will inspire you and have you thinking. Also, note that I didn’t attend all the sessions due to one-on-one meetings outside of the meeting and let’s be honest – the need for this old man’s body to take longer breaks. Please let me know if you have any questions.

First, the KCA Symposium. It’s a group of RCC experts and Clinicians around the globe who want to help KCA attain its mission and vision.

• Mission: To be a part of a global community that serves and empowers patients and caregivers, and leads change through education, advocacy, and research
• Vision: To be the universal leader in finding a cure for kidney cancer

A few overall issues:

1. Like we have said for years, there are often no “yes” or “no” answers to our questions. Science is complicated, many of the options are very gray, sometimes an Option A works on one person and not another even though the patients seem to be an apples-to-apples comparison. Sometimes side effects outweigh the benefit even when a treatment is working and changes have to be made with no understanding why that’s true for one person and not for another.

2. Research including Clinical Trials are moving the ball forward. Organizations like the KCA are helping to bring the best of the best together to discuss, share, and return to their offices more optimistic than ever. The big issue was “what are we going to do Monday as a result of this session!”

3. Many clinical trials are being done with the goal to help the KCA achieve its mission. While I didn’t see any new treatments coming out in 2025, there may be many next year. I should point out that a subcutaneous injection of Opdivo (nivolumab) will most likely be approved next year in the U.S. so us infusion takers will have the option of having a shot that has the same efficacy as the infusion.

4. Our medical teams are passionate, caring, kind and brilliant. Brilliant being the “operative” word. I can’t tell you how much I enjoyed seeing our doctors across the board working together with other doctors to find a cure for all of us. Gave me lots of hope. I met again Pavlous Msaouel, Hans Hammers, Brian Rini, Naomi Haas, Brian Shuch, Matt Campbell and many others. Their absolute devotion to our care is amazing.

5. Like we have said, patients have a vote. They need to speak up. Make their positions known. Ask more questions. Do not let the medical team drive the car without you being a driver as well. Doctors like patients who do this and if they don’t, you have to question your doctor.

6. Personal Opinion – while you don’t have to go from Florida to Texas to see some of the doctors we love, finding an academic institution with RCC experts close to you is prudent. Overall care and survival makes a difference here. Academic institutions in big cities are preferred for obvious reasons.

7. The KCA Team led by Gretchen Vaughan are doing an excellent job of supporting the clinicians and providing this great forum for action. Kudos to them.

Some More Detailed Points

1. There was a healthy debate session on localized kidney cancer and what doctors do in the case of small tumors especially when surgery is recommended but not possible for a number of reasons. It appears that in these cases, SBRT radiation for the primary kidney cancer is an increasing option and radiation for palliative reasons shows a positive overall impact. Neoadjuvant therapy to make tumors more operable later was also discussed. Finally, surveillance was also discussed.

2. Great topic on integrative Oncology which is where Western Medicine plus other therapies are used. This does not mean choosing other medicine versus Western Medicine, but doing both with the blessing of your medical teams. Billions of medical dollars are being spent on acupuncture, Yoga (help with anxiety and depression) and Exercise. There are studies that show that complementary medicine (e.g., acupuncture) does make a difference. Also, nutrition can help. Food with Omega 3 fatty acids reduces fatigue, brain fog and even joint pain. Regarding exercise, even 2-10 minutes of gentle movement after meals can help. Meditation can help reduce the need for opioids. Acupressure is being used to reduce anxiety. There was also discussion on the management of sleep, fatigue and distress involving a) restoration – retraining the brain b) compensation – minimizing interference of cognitive difficulties and c) managing fatigue (more physical activity and even getting up if you can’t sleep, doing some low stress activity and then going back to bed.) They talked about Sleep being important and the need to keep a consistent schedule, minimize caffeine and again, getting up if you can’t sleep and then doing something restful and going back to sleep. Finally, they emphasized that exercise is medicine. Need to establish a routine and even the most basic exercise is important.

3. An entire panel talked about what to do with small renal masses. For T1A masses, there was an increasing view of active surveillance. The panelists debated tumor size as an important factor in counseling patients (with active surveillance being a safe management strategy) while others talked about the rapid growth of tumors being a huge part of defining next steps. The growth rate can indicate a greater need for direct intervention with rapid growth rate (scan to scan) being associated with increasing likelihood of Mets in patients. Another doctor talked about histology being the key to understanding what to do with small tumors. There are now 20 different subtypes and the best way to determine treatment is knowing the histology, which predicts the behavior of the tumor. An agreement that biopsies were safe (don’t let anyone tell you that leakage from biopsies is a “big” problem – it isn’t). There was also a discussion for when to do genetic testing and the panel seemed to agree that if 46 and under, genetic testing makes sense. The above views on size, acceleration and histology is another case of the “grayness” in dealing with cancer. Three different doctors have three different views on watching small tumors. One focuses on the size of the tumor to make a difference. Another looks at the rapid rate of acceleration in growth scan to scan and another (surgeon by the way) likes to do biopsies to understand histology in order to make the decision. What’s the “take away” for all of us – know these things so we can ask doctors about rapid growth versus size versus histology and get their opinions. Really interesting session.

4. Discussion on the fact that there are no current biomarkers to guide treatment selection. In other words, no simple blood test or urine test to find RCC cancer today. Researchers are still looking into it.

5. Another excellent session focuses on patients. There were many themes I took away from it both during the session and asking questions later throughout the session. Dena Battle presented a “burden scale” focused on developing drugs that increase cure rates. Her conclusions were that a) disease burden experienced by metastatic kidney patients is excessive; b) new strategies are urgently needed to address and reduce disease burden; and c) future treatment developments should aim to increase overall survival and reduce disease burden. There was also some discussion on whether patients and doctors need to have ongoing conversations on the subject of quality of life versus quantity of life and how to find that right balance. Questions that need to be examined include whether it is necessary to get the number of scans we have, all the blood work we do, see dozens of doctors, and/or place us in bankruptcy in our aspiring for a cure where the effect on quality of life is significant. There is not an answer here but the concept is one we all need to think about. We also talked about how the financial toxicity of this disease and quality of life can depend on both the zip code where you live and your socioeconomic status. Don’t like this but it’s a fact. Our own Katie Coleman did an excellent session on the very unique issues of young people dealing with cancers and some recommendations for doctors and patients to communicate more about these issues. Really loved her talk.

6. There was another session about treatments beyond Immunotherapy and TKIs. The first type of drug is HIF 2a inhibitors like Belzutifan. There is still hope that this drug can work on a good number of patients but it’s now being tested with other lines of treatments. There are other HIF 2 studies in place as well. Researchers are also looking at other checkpoint drugs that provide increased outcomes, deeper responses, more durable responses and less toxicity. Another area of research involves new pathways that are showing promise and many trials along those lines. These include things like LAG 3 Inhibitors both alone and in combination with TKIs and ipilimumab/Nivolumab and Bi-specifics that target PD1 and CTLA. CAR-T Therapy trials continue to progress and in my opinion get better. Goal is to reduce the side effects that go along with it. There is even an “off the shelf” version of CAR T that will be on the market for doctors next year. Finally, researchers are looking at cancer vaccines that have proven to be very challenging. Most have not led to any positive results in the past. But, they are now looking at the MRNA vaccine technology used for COVID to see if it can work for our disease. Finally, they are looking at treatments for Melanoma that have often then been trialed in the RCC space and have worked. My take away – hundreds of trials going on in a number of spaces that hopefully lead to new FDA-approved treatments and approved by the European Medicines Agency (EMA) as well but I don’t see anything approved next year.

I learned a lot and am glad to say that in any given year, you will hear this from our Community Members, education sessions brought to you by the KCA and The Judy Nicholson Foundation, a KCA Affiliate Partner. While the last few days were all “doctor talk” the patient sessions planned for next year focus on us.