A question for the NSCLC Community

What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?

Answers from the Community

I’d have to say just over time talking to people in different areas like waiting rooms, other patients, and discussing their experience and hearing about how others have gone through it has actually made it so … feel like a little bit of relief to hear.

The GO2 Foundation and LUNGevity Organization have both been so very helpful with educating me in information. And online support groups through, I think it was called Insight, I found early on. And then I found patient-led support groups on Facebook. And though the Facebook connections have made the biggest impact, like yesterday, when I didn’t know what to do about not sleeping for four days because I’m on steroids for my IV chemo. And I asked the online support group, “This is the drug I’m on. This is what I’m up against.” And then I got so much response of people saying that after they talked to their doctor about the same problem, then they were able to lower their dose or they changed the time of day that they took their dose. And so that support, knowing and everybody online, I mean, we’re from around the world. So if I get up at 2:30 in the morning and I have a question, I can post that online and there’s somebody on the other side of the world that it’s the middle of the afternoon for them, and they can give answers. And through LUNGevity and GO2 Foundation, and LUNG FORCE, I have attended in-person events and met other survivors and got to share experiences with them. And that, building those bonds online, and then meeting somebody in person has just been so amazing to go through.

Well, I do a lot of reading on the subject of non-small cell lung cancer, and the Patient Voices what’s next is a very good website for encouragement and latest treatments and discussing different things. And talking to the doctor, of course, helps. And also just going to different sites like Memorial Sloan Kettering, reading their treatment options, or comparing different approaches and different hospitals in the treatment of the disease. And that helps because it gives you an overview of different things that they’re doing, and also the advances that they have, whereas 10, 15 years ago, they did not have these types of advances in terms of chemotherapy pills or different types of interventional radiology procedures that are minimally invasive, where you can go home. So the internet is very helpful in that, but I take it with a grain of salt, unless it’s coming from a reputable site, and then discuss it with the doctor.

I am a researcher and I look everything up on the internet. I’ve spent hours and hours going through it, which maybe was not as good as it could have been, but I found the What Next website. To me, that was very helpful because it was actually other people who were going through the same thing or have gone through it. And so, it was very helpful to hear what they had to say. I also found out a lot of good information at the American Cancer Society’s website. And so, those are the two that I found most helpful.

We have found a variety of resources. A number of websites have been helpful looking for alternatives to treatment plans, and also dealing with the current treatment. There’s a number of websites that’s available. It’d be a long list if I was to go into all of them. Also, we have also used a couple of apps that have been helpful. And other resources that have been helpful have been one of the visiting nurses was extremely involved and helpful in making suggestions and referring back to the current treatment doctor for ideas, and she was a very helpful individual. What things that make the resources helpful are on some of the websites, being more specific, not locking up too much of the…On information for medical professionals. I think people should be allowed to be responsible for finding out some of the information that may not be readily available on the website without going into the medical professional source of the website.

The best tool I have found is my lung cancer support community online through a organization called LUNGevity. Besides meeting in person before COVID, whenever we can, we have Zoom chats. We have a Facebook board, and anything anybody needs to know, we could always put it out there, because there are so many of our brother and sister lung cancer families that have been through it and can help you with what questions to ask the doctors and things like that. I also find the GO2 Foundation Facebook page very useful, and Lung Cancer Research Foundation. I usually connect with people through their Facebook pages for those organizations, but their websites are a wealth of information, too. It’s really useful for me when I’m looking for events around the neighborhood and different summits. Now, with COVID, there are so many, since they could be online, and doctors can do a lot more now without having to travel.

I belong to something called WhatNext, and I find it’s invaluable. Throughout this whole journey, I’ve been able to connect with people who are going through what I’m going through or similar things, or maybe even worse things, sometimes better things, and by touching base with these people, I’m able to get centered and recognize my own condition in inside perspective.

For me, the ALK-positive website and Facebook support group has been the best. It’s a good place to talk to other people who are going through the same treatments and have gone through the same treatment and just get some advice and just support.

I have a CD. And I know that’s funny. I have a CD that I listen to that is a healing CD for cancer patients. Half of it is a meditation, a guided meditation. The other half is positive affirmations. It has gotten me through a lot of tough times. I also am a believer in the Serenity Prayer and praying.

I use a couple of websites from lung cancer advocacy organizations, specifically Longevity, and also go to Foundation for Lung Cancer. They have a lot of resources on their website. I sometimes listen to podcasts that have to do with just the latest in treatment. That way I can educate myself and keep up with the latest research.

Initially, I went to lungcancer.net and acquired a lot of information there regarding my cancer, and then from there, actually once I finished chemotherapy and I joined the American Cancer Society whole club in Latham, actually I joined during there during my chemotherapy, they became my biggest and best resource. They provide counseling, a library, support groups, and assist with providing or finding transportation to and from treatment. Another group called Joyus, J O Y U S, which was through the American Cancer Society, is a volunteer group that provides outdoor activities for survivors, such as kayaking, sailing, and hiking.

Resources, I think online resources are huge. There’s a group called EGFR Resistors on Facebook that is my go to source when I need suggestions on how to deal with particular side effects caused by my TKI drugs. Other than that, I go online for information. I do my own research on medications. I get any number of email med letters that I follow for hopefully new treatments or updates. My best resource, as I just mentioned, is the EGFR Resistors on Facebook. It’s a closed private group, but I can go there for information. I went there when I wanted to get a name of a doctor for a second opinion up at Moffitt. That’s really where I would go. What I’m missing right now is the support group, which closed with the COVID because the nurse navigators were excellent in terms of pointing me in the right direction with questions.

One of the resources that I found to be really just so helpful was when I went to the Mayo Clinic and they have there, in the Gonda building on the first floor I believe, this whole beautiful room just full of all kinds of resources, everything you would possibly want. And not only that, but when you want to work with one of the librarians there, they will look for the research or the very specific research that you want and even email or correspond with you regarding any particular questions that you might have. I thought that was phenomenal. And of course not, everybody gets to experience that at the Mayo Clinic. I even had some DVDs from there and lots of pamphlets and books, a lot of things that you can borrow and then return. But I was just so impressed with that. And the other website is the NCCN, the National Cancer Center, something, something that’s very official. There is a patient side and a provider side. I like going through the provider information, but also the patient side is good too, but the provider is much more technical. It took me a long time to learn how to navigate that. But once I did and could rely on that as this is the protocol, that was an awesome website.

I think the group that I’ve probably relied on the most for information is Longevity. They have a variety of support groups, something you can just type in and talk. You can get printed information. They have a lot of different support groups, Facebook groups based on type of cancer mutations. Just gives you somebody to talk with who’s got a similar mutation, similar drugs, so it just makes it a bit easier.

I browse the American Cancer Society website a lot. There’s a lot of information, new information all the time about different treatments available, new clinical trials. I’m also a member of a lot of different support groups on Facebook, and I think it helps me mostly because I’m done with my treatment and I get to help other people get through their treatments because I’ve already been through it, especially with the immunotherapy since there’s so much that’s not known about it. I was in the first phase of the trial and now it’s available to everybody, so who better to answer questions about what the medication is like than somebody who was in the first part of that trial?