April 2021 Clinical Trial Conversations

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Clinical Trial Conversations
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Meet Maia and Manju, Clinical Trial Champions 

Clinical trials are critical to finding a cure for colorectal cancer. As an advocacy organization dedicated to supporting and empowering a community of patients, caregivers and families, Fight CRC has partnered with COLONTOWN to deliver a monthly blog series highlighting everything patients need to know about clinical trials and the best treatment options available. 

In this series, we hope to cover promising trials that are enrolling, lessons learned from past research, logistics and resources to joining a clinical trial, and provide relevant and timely updates for our colon and rectal cancer community. 

The first blog in this series will introduce you to our two clinical trial champions, Maia Walker, Lead Curator of the Fight Colorectal Cancer Trial Finder, and Manju George, Scientific Director of COLONTOWN

Maia Walker
Manju George

It felt (and feels) like the natural thing to do –to give back information, time, and stick together, so others may navigate this difficult experience with more ease. I think only later one realizes that this is being “a patient advocate”.

Maia Walker, Patient Advocate

How did you get interested in clinical trials?

Manju

“Though I knew what clinical trials were in a very generic way—I used to be a biomedical researcher and cancer research was one of the areas I worked on—I hadn’t paid much attention to it until I was diagnosed with cancer. As I recovered from surgery and was getting ready for 6 months of FOLFOX, I was unsure if this regimen was the best for me. On COLONTOWN I saw a post about the IDEA trial (3 months versus 6 months adjuvant chemotherapy for stage III CRC) and my interest to learn more was piqued. I read more on it and was able to discuss it with my oncologist, who then recommended that I try 3 months of CAPOX. 

Looking back, I think this was the best decision for me. This gave me the option to have the least chemo but most effective regimen for me, which I believe gave me the most benefit with the least amount of long-term side effects, for which I am very thankful.

As I got more involved in COLONTOWN, especially in the Clinical Trial groups, where Maia used to post information about trials of interest to patients, I started looking up specific rationale or pre-clinical studies, where available, and posting them. Then I got interested in clinical trials for BRAF V600E mutated metastatic colorectal cancer, as this is a particularly aggressive form of CRC with not many treatment options and particularly dismal outcomes. Now, as a patient advocate at the National Cancer Institute Rectal Anal Task Force, multiple aspects about clinical trials are on my mind almost daily.”

Maia

“When looking up the best treatment possible for my friend, I came up with information about procedures and drugs that held promise but were not part of the standard of care yet: they were in clinical trials. I learned about eligibility, how clinical trials are designed, and how to read the records. Sadly, my friend had a second active cancer and could not participate in them. In the meantime, I was sharing this information in online forums so others could consider participating in them. Drugs and treatments that nine years ago that were experimental are now part of the standard of care for CRC (regorafenib, TAS-102, and immunotherapies for CRC patients with MSI-High).

This is how I became connected with Tom Marsilje, scientist and stage IV CRC patient, who was starting to become an advocate too. He was the father of Fight CRC’s Trial Finder and a friend I keep in my heart forever.”

Let’s chat about a trial! What trial is recruiting right now that you believe our community should be aware of? 

Maia

“PACES (Preventing Adenomas of the Colon with Eflornithine and Sulindac, NTC# NCT01349881) is a perfect example of a trial that debunks the myth of clinical trials as the last resource. It is for patients who already had colon or rectal cancer, stage 0 to III, and who are cancer free. The goal? Help them to prevent the development of new adenomas (precancerous polyps) or a second primary cancer in the colon. From the perspective of a patient, it is a great opportunity to maybe prevent a recurrence, while receiving the best following from doctors. The trial implies taking pills (oral administration, without a ton of clinic visits) of two already approved-for-other-uses drugs, with well-known safety profiles, or maybe placebos. There are many locations where the trial is available, and the trial has been ongoing for several years. Many who are on it, even if they don’t know if they are receiving the placebo, feel empowered because they are doing their share and contributing to the research to help others.”

What is one tip you have for patients when beginning to search for trials?

Manju

“Start early. 

When you are diagnosed, it’s a good idea to read documents like the National Comprehensive Cancer Network (NCCN) patient guide and to take your time. Initially, nothing may make sense. But over time, things will get clearer. The NCCN  lays out the different standard of care (SOC) options for your stage and type of cancer. It helps you see the potential treatments that you can have. I think this can put you in a frame of mind where you are able to think about what treatment you should consider next. Learning is an active process that can be impacted greatly by the patient’s (or caregiver’s)  state of mind. The best time to search for trials is when chemotherapy is working, when things are stable or shrinking, and you have figured out how to deal with the side-effects of the current regimen. This is the time to start reading up about clinical trials and join groups like COLONTOWN where clinical trials are discussed in the Clinical Trial groups. As you do this, it is important to figure out your goals of treatment. Everyone is aiming for a cure, but in that path what do you want for the short-term? What are your plans to get there?”

Maia

“Start researching clinical trials as early as possible, at the time of a cancer diagnosis. Worst myth in the house is ‘clinical trials are the last resource.’ On the contrary, there are clinical trials even for those just diagnosed, for those about to start the first line of treatment, for those that are in the third line of treatment, for all stages, etc..  Also, there are clinical trials that don’t provide active treatment for the disease but that might ease side effects from treatments or help family members to check if they are at increased risk. Those are incredibly important!

Clinical trials might be the chance to receive a treatment that is just about to be approved. For patients with the most common type of CRC, clinical trials allow them to receive new treatments from the emerging field of immunotherapy for CRC.

Be proactive, research about clinical trials even when you think they are not needed.”


Stay Tuned for More!

Once a month, Maia and Manju will spend time unpacking important research trials, tips, and advice for our community. Be sure to subscribe to sign up with Fight CRC and join COLONTOWN’s online community to continue receiving the most relevant updates in the CRC world!

You can also follow Maia (@sassycell) and Manju (@manjuggm) to stay updated on research and trials and visit ClinicalTrials.gov for more information on trials.

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