How Do I Find Out About Experimental Mesothelioma Treatments?

If you or a loved one has recently been diagnosed with mesothelioma, there is really no way to soften that news or lessen the blow. It’s a devastating experience to go through, and your world is sure to be spinning faster than ever at the moment. 

Shortly after the diagnosis, your attention is going to turn to treatment options. And, as you will learn from your doctor, the choices are somewhat limited and don’t deliver a particularly rosy outlook for the future. The standard treatments that are used for mesothelioma may be able to make the patient somewhat more comfortable, and could extend the lifespan of the individual modestly, but the overall picture is an unfortunately grim one. 

Learning more about experimental mesothelioma treatments

It’s with this in mind that many people turn to exploring experimental mesothelioma treatments as a way to seek some hope for the future. By volunteering to take part in trials that are still in the experimental stage, it could be possible to receive a treatment that will wind up being more effective than the current standard methods. There is no guarantee of good results, of course, but many top facilities are working hard on making better outcomes possible[1] for those with this condition. 

So, how do you find out about these kinds of experimental treatments, and what kind of experience can you expect if you do get involved? We’ll outline some of the key things you’ll need to keep in mind below. 

The Kinds of Experiments to Explore 

Prior to being diagnosed with mesothelioma, you probably didn’t spend much time at all thinking about medical experiments that involve humans. Unless you work in a related field, this is something that the average person often doesn’t research. 

When you think about it, however, the need for human trials is obvious and critical. There needs to be a method available to test medications and other forms of treatment in the real world to evaluate their performance as well as any side effects that they may deliver. 

There are a couple of different ways in which a patient may gain access to treatments that go beyond the standard approved protocol.

Methods to Access Experimental Mesothelioma Treatments 

Clinical trials

This is one of the last, and more important, stages that needs to be cleared before a treatment can hit the market with FDA approval. There are various phases involved with clinical trials, and patients may be eligible to join. Depending on what kind of clinical trial you join, and when you join it, the trial may be working on determining the safety of a drug, or it may be testing how well a treatment performs in terms of addressing the targeted condition.

Compassionate use

In this situation, it’s not that an individual who receives an experimental drug is part of a formal test, but rather, they are being given access to a medication because it has been deemed possible that the drug will help their specific situation. There are various compassionate use programs available for treatments that haven’t yet earned formal approval for broader use. No guarantee is in place that any given individual will be approved for a compassionate use exemption, but this can be a path worth exploring for those searching for anything to help with their mesothelioma diagnosis. 

One other possibility is to be prescribed a drug that is already on the market for a different purpose but may have benefits for those with mesothelioma. This is known as off-label use, and while it isn’t part of any actual trial or experiment, there may be an opportunity to try something that could be beneficial if suggested by your healthcare provider. 

How to Find Mesothelioma Clinical Trials 

There are constantly medical trials underway that are seeking to address virtually every illness and disease under the sun. Some of those trials are sure to be targeting mesothelioma, so it’s just a matter of knowing where to look and spending some time finding an appropriate trial for your situation. 

As a starting point, you should explore the various databases that exist to organize these kinds of trials. Perhaps the best resource is ClinicalTrials.gov, but there are many others. For something specific to this disease, look at the information provided by the Mesothelioma Applied Research Foundation. 

Some trials are ongoing and applying as a new patient can take time.

It’s important to note that you might not find anything right away, or you might find trials that are underway but aren’t currently looking for new participants. Don’t give up if you don’t find a good fit on your first try – pay attention to these databases as they are updated, and you may see something come along that is well-aligned to your circumstances in the near future. 

In addition to checking clinical trial databases, also make it a point to talk to your medical professional. You may not be the only patient they are interacting with who has received a mesothelioma diagnosis, so they may have some insight into a trial that would be relevant for you. Even if your doctor doesn’t have direct knowledge of ongoing clinical trials, they might be able to put you in touch with someone in the field who does. 

Finally, there are patient advocacy groups that have been developed around many different types of diseases, including mesothelioma. If you join one of these groups, either locally or online, you might find additional resources available that you can explore in the search for experimental treatments. 

What Process is Required to Get into a Mesothelioma Trial?

As exciting as it might be to find a trial that sounds like a good fit, you’ll need to do some work on this matter before you can be considered. As a starting point, it’s a good idea to consult with your physician on the trial you have found. They may be able to offer some insight into whether or not the trial in question seems like a good match. 

Clinical Trial Criteria for Experimental Mesothelioma Treatments

Likewise, you can look at the information provided by the clinical trial itself to see what the stated eligibility criteria is. If you fall outside of the criteria that have been established for this phase of the trial, you won’t be accepted to join the study. Of course, if there are subsequent phases of the trial still to be completed, you will want to monitor the situation closely to see if you qualify for one of those. 

If you find a clinical trial that is a good match and for which you fit the criteria, you can submit an application. The application process involves answering any and all questions that are presented as part of the forms that need to be submitted, and then waiting for a response. Even if you are sure that you do fit within the criteria for the trial, there is still no guarantee that you will be accepted. 

Consider the Financial Factors 

There is always a financial element to consider when getting any kind of medical treatment, and going into a clinical trial for mesothelioma is no different. The place to start when thinking about how you’ll pay for this treatment is with the trial itself. It might have financial information included about what the trial costs or what types of benefits might be available. 

At the same time, it’s important to note that patients are normally compensated for their participation, meaning there may be a financial benefit to joining even though the treatment itself may be costly down the line. 

Not all insurance plans will pay for experimental mesothelioma treatments, but some will.

From there, the next step would be to go to your insurance company to look for answers should there be some form of financial commitment up front. Since you will be looking at taking some type of experimental treatment, you may or may not be covered for joining in with such a trial. It’s possible that you’ll wind up with partial coverage, in which case you will need to think about whether the out-of-pocket cost is going to be manageable and worth it to you. 

Finally, there may be groups available that are offering financial assistance to help people get into medical trials for experimental treatments. For instance, in this case, it could be that a mesothelioma advocacy group has some funds available to either pay for a trial or to provide some support to help pay for it. Perhaps the combination of partial insurance coverage and financial aid from this kind of group could come together to cover the cost. 

Finding Ways to Cope with a Mesothelioma Diagnosis

 Seeking alternative and experimental treatments for this disease is a great idea, and in a way, can be a form of coping and therapy to help you deal with this process. At the same time, it’s important to work on finding other ways to cope that are going to help you get the most out of your life and the time you have with the people you love. 

There are many different coping strategies that are used by people in this situation, and no one plan is perfect for every individual. Among the things to think about in the coping process are the following – 

Other coping strategies while treating mesothelioma

Seek support

This is not the kind of thing that you should be trying to go through on your own. Instead, you should be getting help from people who are close to you as often as possible. Remember, that doesn’t mean you have to just sit around and talk about the bad news – it could just be spending time together, doing whatever it is that you love to do. The support of others is usually the defining difference for people who are able to continue on getting the most out of their life. If you don’t have enough people around you to get the kind of regular support you would like, consider also working with a professional therapist to have someone to talk to about the situation and where you are in life.

Think about your legacy

What do you want to leave behind in this world, both for the people you love and for humanity as a whole? There are various ways to think about your legacy and now is a great time to consider those possibilities. In fact, participating in clinical trials is one good way to check off this box, as taking part in a study could prove critically important for future developments in the treatment of mesothelioma.

Handling your affairs

While it might not seem like a positive thing to do, dealing with the various affairs that you want to get in order can actually be therapeutic and calming. It’s unsettling to think about the many different things that you don’t have in place, all the while knowing that your health is not in good condition. By sorting things out and having a plan for whatever needs to be handled after your passing, you might find a surprising amount of peace.  

Being diagnosed with mesothelioma is a life-altering event. This is often a terminal diagnosis, and coming to grips with such a stunning reality is difficult, to say the least. In the aftermath of receiving word of this diagnosis, you’ll likely want to spend as much time with family and friends as possible, in addition to seeking out whatever treatments may be available to deal with the condition. Beyond drugs, other treatment paths[2] may help maintain quality of life for as long as possible, such as doing yoga for mesothelioma. 

Financial Planning / Leaving a Legacy

You may also find your mind turning toward the task of leaving a legacy behind for those you care about most. Part of that legacy could include financial compensation that you pursue and receive as part of a legal case related to your mesothelioma diagnosis. The vast majority of mesothelioma cases are linked to asbestos exposure, and someone should be held responsible for the exposure that has led to your health problems. 

Compensation may be pursued in the form of a lawsuit or through trust funds, depending on your particular situation. Contact an experienced asbestos attorney right away to learn more about your options and get started toward securing the damages that you and your family deserve.

[1] New Era for Malignant Pleural Mesothelioma https://www.ingentaconnect.com/content/wk/jco/2022/00000040/00000006/art00016[2] Novel Approaches for the Treatment of Unresectable Malignant Pleural Mesothelioma https://www.spandidos-publications.com/10.3892/mco.2022.2522