Published on October 26, 2020
Hear the personal story of mantle cell lymphoma (MCL) patient Larry Fagan’s diagnosis as well as his advice for fellow patients, including the importance of finding the best available treatment and seeking out support. He also shares MCL resources and his recommendations for finding trustworthy cancer information.
Larry Fagan’s Story
My Journey and Some Advice for Others
I was diagnosed with mantle cell lymphoma (MCL) in 2012. I lived near a major medical center that had many years of experience with diagnosing and treating lymphomas, so fortunately I didn’t have to travel far to get good information, and I proceeded to obtain treatment at that local facility.
However, now I often encourage patients to get a second opinion if they have the resources to do so and don’t need immediate treatment. The reason is that there is no standardized treatment for mantle cell as well as some of the other rare types of lymphoma. Getting a second opinion is often a good way to explore another viewpoint on treatment options.
Online support communities are another resource that I didn’t utilize until I had already completed my initial treatment. Support groups offer encouragement and a strong social network, but they also provide excellent information about what to expect during the treatment process. In many situations, the advice from the support group is complementary to the information presented by your medical care providers. Fortunately, there is a strong network of MCL resources to explore.
One piece of advice you see when you join an online community is: “Don’t look at the internet!” I have a very mixed reaction when I see someone write that in an online post. I agree that the data about prognosis that you find with simple searches are very much out of date and not representative of what is currently happening. There are some scientific reasons for why the information is out of date.
If a researcher has an idea for a new way of treating a disease, then they need to create a clinical trial that compares the proposed treatment to the current treatment for a subset of the diagnosed patients. For rare diseases, it may take several years to accrue enough patients in the clinical trial so that the investigator can make statistically meaningful comparisons. Then, for each of those patients, it takes some time to complete the treatment. Lastly, you need to wait until half of the patients have reached an outcome (such as the time until the disease returns) before that data can be fully analyzed. It could easily take 10 years for the full results of the study to be determined and published, so what you read in 2020 may be the best ideas of more than a decade ago.
As an example, CAR-T is a promising treatment for MCL and other lymphomas. In 2010, there were eight clinical trials for CAR-T internationally while in 2019 there were around 250 CAR-T trials. It will take some time for those trials to change the prognosis statistics, so the real situation is much better than what appears in a simple internet search.
On the other hand, the internet provides information about promising new treatments that are in very early stages of development, information about side effects and many more crucial facts. So maybe the admonition should be: “Important progress is being made, so don’t look at the internet without understanding why there is a delay in reporting the results of treatment experiments!”
My treatment was effective, and I remain in remission. But beyond the treatment, what really helped during this time was support at home and in the online groups, as well as keeping track of the up-to-date medical information.
By Larry Fagan
Transcript | MCL Patient Story: My Diagnosis and How to Find Support
Larry Fagan: The doctors put it euphemistically as, “mantle cell lymphoma has a way of coming back,” which means you don't know when and you don't know in what way. Having that hang over your head is difficult.
What Was Your Initial Reaction to Your MCL Diagnosis?
My diagnosis happened in a very unusual way. I was experimenting with a new part of the electronic medical record that the patients can access. In a hidden part of that new medical record, I saw I had a 90-minute appointment with an oncologist scheduled for the next day. I inferred from that, that the biopsy that we had done a week earlier was in fact some kind of cancer although I didn't know exactly which type. Even though I'm a techie kind of guy, that was probably not the best way to find out about being diagnosed.
I have a cancer called mantle cell lymphoma and mantle cell lymphoma is a cancer of the B-cells, which is part of your immune system. The way that cancer grows is different in different people. But many people end up with lymph nodes that swell, and the physicians are able to look at one of those lymph nodes under the microscope and from that, try to determine the extent of disease and help to understand what treatments might be appropriate.
Are There Support Groups for Mantle Cell Lymphoma Patients?
There are two key things that you need to know when you're first diagnosed. The first is that it's really important to get connected with a patient community. They're online. There are multiple ones and Patient Power has a webpage for mantle cell lymphoma that includes some online communities that you can explore and connect with people who have gone down this process and found out what really works.
When you get into those online communities, the first thing you’ll read is "don't search the Internet." Actually, there's lots of good information on the Internet, but particularly the prognosis information is very typically out of date.
One of the things that we've tried to put in our online resources is access to organizations that can help with the financial burdens, that can help with psychological burdens, that can provide help... Some people are by themselves, and this is a difficult process to go through if you're by yourself.
We'll say we haven't heard from this person in a while, how are they doing? Someone will call them or contact them. Or someone comes back from the doctor's office and say, "I got good news," or "I got bad news," and they get a response from the community. That's why the online communities are so important.