Living Beyond the Diagnosis

Understanding the Research Process and Managing Expectations

As I prepare for my second visit to Boston for MyTrial in about 5 months, I cannot help but be full of thoughts & questions. MyTrial is not just a typical clinical trial; it’s a comprehensive study designed to identify the unique form of Multiple System Atrophy (MSA) each patient has and formulate a personalized treatment plan. My first visit involved extensive testing to create a model of my neurons, allowing researchers to test current and future treatments on them. The journey ahead is complex, but it’s filled with hope and potential breakthroughs.

The processing of tests and samples can be a lengthy and meticulous process. For instance, initial PET scans and biomarker tests can take several weeks to yield results due to the volume of data and the need for detailed analysis. Similarly, skin biopsies and cell cultures require significant time to process—often one to two months—ensuring that all data is accurately analyzed and contributes meaningfully to the MyTrial database.

It’s also important to note that while clinical test results can be shared with you, research test results are subject to strict regulatory guidelines. This means that only FDA-approved tests can be formally provided to patients. However, MyTrial is committed to transparency and will discuss findings and ongoing clinical trials during your six-month follow-up visit, giving you a clearer picture of your progress and potential next steps.

Exploring New Treatments While Participating in MyTrial

During this interim period, I’ve explored other treatments to manage my symptoms and improve my quality of life. One such treatment is the Cyclic Variations in Adaptive Conditioning (CVAC) therapy I am chronicling here on my blog. CVAC involves controlled changes in barometric pressure to enhance physical conditioning. While it hasn’t been rigorously tested for neurodegeneration, I’m cautiously optimistic about its potential to strengthen my legs and reduce inflammation.

The team at Khurana Labs assured me that participation in therapies like CVAC or other clinical studies, such as the Theravance OH Study, will not interfere with my involvement in MyTrial. The design of MyTrial ensures that additional treatments will not sidetrack your progress or the outcomes of the trial. This flexibility allows you to explore supplementary treatments, or desired Clinical Trials, while continuing to benefit from the structured and comprehensive approach of MyTrial.

The medical team at Khurana Labs has been supportive, providing insights into various treatments and their potential impacts. In addition to CVAC or Theravance, another area of interest to me is the potential of stearoyl-CoA desaturase inhibitors and drugs like Tafamidis. While these treatments are in various stages of research for different conditions, they haven’t been explored specifically for MSA. The team’s openness to discussing these options gives me a broader understanding of ongoing research and how it might eventually benefit MSA patients. The discovery of new genes and the testing of drugs like Foralumab, which targets T cells, are promising areas of research. While these studies are still in the early stages, they represent potential breakthroughs that could significantly impact the treatment of MSA. I’ve also been curious about new research discoveries, such as genes like USP38-DT and KCTD7. These findings are in the early stages and need further validation before they can consider integrating them into MyTrial. Staying informed about these developments keeps me hopeful about future breakthroughs in MSA treatment.

As I continue this journey, I remain committed to the MyTrial process, knowing that it’s a critical step towards finding personalized treatments that could significantly impact my life and the lives of others with MSA. I remind myself that MyTrial is a long-term commitment. The tests and evaluations conducted are thorough and require time to process. Patience is essential, as these results will eventually guide a personalized treatment plan. Understanding this process helps me stay grounded and optimistic about the future.

Preparing for the Second Visit

As the six-month mark approaches since my initial visit, it’s important to know what to expect next. The primary goal of the second visit is to assess my clinical progression and review any initial findings from the tests conducted during the first visit. Here’s a breakdown of what will happen behind the scenes between visits:

1. Biometrics and Wearable Devices: Data from wearable devices are stored and analyzed to establish a baseline and track changes over time.
2. Initial PET Scans: These scans are processed by nuclear medicine teams, with results typically taking 6-8 weeks.
3. Biomarker Testing: Blood, CSF, and skin biopsies are collected and stored, with analysis taking several weeks.
4. Cell Culture: Skin cells are cultured and stored, with stem cells created as needed for specific studies.

The discovery of new genes or the development of new treatments is an ongoing process, and the MyTrial team is continuously working on validating early research findings. For instance, that potential use of Foralumab, a drug that acts on T cells, is being explored for its effectiveness in modulating immunity in the brain.

While I may not receive formal research results immediately due to regulatory requirements, my second visit will involve a comprehensive review of my clinical progression. The team will discuss any findings informally and update me on relevant clinical trials and research developments.

In preparation for my next visit, I will continue to monitor my symptoms, follow the treatment plans recommended by my medical team, and stay engaged with the MyTrial Team. My proactive participation and patience are crucial as the team works towards finding effective treatments for MSA.

I should also prepare for ongoing communication and updates. The volume of interest and inquiries has increased, partly due to outreach efforts and the growing community of MSA patients from this blog seeking answers. While this means adhering to scheduled follow-ups and communication windows, it also signifies the expanding reach and potential of MyTrial.

Summary

In summary, the period between visits is not just about waiting but actively engaging with new treatments, understanding the research processes, and preparing for the next steps. Staying informed and proactive will be key to making the most of the opportunities MyTrial offers.

As I look forward to my second visit, I’m filled with hope and anticipation. MyTrial is a beacon of hope for those of us with MSA, offering a path towards personalized treatments and a better understanding of this complex disease. It reminds me of the importance of staying informed and proactive. This next visit will involve repeating many of the initial tests, and I’m eager to see the progress and discuss the next steps with the team.

~Coach~

This blog post captures the journey, the exploration of additional treatments, and the preparations for the next steps in MyTrial. Hopefully, it provides a comprehensive and helpful narrative for fellow MSA sufferers and their loved ones.