A question for the NSCLC Community

Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?

Answers from the Community

I am currently seeing a neuro-oncologist. They put me on Namenda to help retain my memory. I’ve seen a psychologist and a psychotherapist and a psychiatrist for bipolar medication called Latuda and also something called Modafinil, which I take in the morning, otherwise I am exhausted.

I manage my disease at the moment with a daily targeted therapy, chemotherapy pill that is controlling two of the three mutations that are driving my lung cancer. And now I’ve added a two-drug chemo cocktail, IV chemotherapy that we’re hoping will control the third new mutation. My oncologist and I came up with this current line of treatment because I developed a lung cancer progression in a new area, a new tumor was growing. And we biopsied that with a needle biopsy, and we discovered the third mutation that does not have a targeted therapy drug developed yet. It’s in development. And my oncologist explained I would be on IV chemotherapies to hopefully shrink down and kill, hopefully, that new mutation and new tumor. And then I’ll switch over to a maintenance chemotherapy that will hopefully keep it from returning.

Well, when I first went to the doctor she said that I had an EFGR, I believe that’s the name of it, positive test, which meant it was a protein coming from the cell and that was a gene mutation. So, of course, surgery was not an option. So they have chemo pills, which I described in my previous response. So we came to that conclusion about staying on those pills, which they did help. They did shrink the lesion in the liver and shrink the nodule in my lung. But the most successful one was Tagrisso, but because it caused serious complications, including heart and renal failure, which I had never had before, I had to be taken off that to a different medicine, which is not having the greatest result. It’s keeping the lung nodule stable, but the liver lesion has grown. So now I’m faced with an interventional radiology procedure to destroy the tumor in the liver cells by injection of chemotherapy.

When I was first diagnosed, I talked to my doctor, and my husband and I had been looking at things, and we decided that we were interested in all of the immunotherapy new treatments that were going on. I talked to the doctor, and I was enrolled in a clinical trial that included immunotherapy first, and then, surgery. And the immunotherapy was so successful, I didn’t even require chemo after the surgery, which was what was supposed to be the next step. I got treatment with the immunotherapy drugs for a year. And I finished in December of 2019. And I had no evidence of disease in the year following the surgery, and so, now I’m done with treatment, and I am just being monitored. Every six months I have a scan and every six months I see my doctor. I have an appointment every three months and I’m being monitored now. And I still have no evidence of disease.

Current condition is recuperating from chemotherapy and radiation therapy. Severe damage to the pleural of the lung from the radiation especially. Working with the pulmonary doctor and oncologist to find a treatment for it. The plural effusion came about as a result of the damage, and that was the first thing we had to manage. Spending six months with drainage of the pleural effusion on a bi-daily basis. We had a visiting nurse that came one day a week that was helpful. Then toward the end, when it seemed like the effusion was reducing, we were doing it daily until we found after a CAT scan was done that it actually had been plugged or had been stopped within the catheter that was doing the draining. So a special medication was injected backwards into the pleural, which created the drainage to go again, and that went on for a few days, and then it also was deterred again, so we had another one two weeks later. That lasted about a week and a half, and it was decided about a pulmonary doctor at that point that we would leave the pleural effusion and go to other treatments, which we’re now using a nebulizer for coughing and congestion, and also a vibrating vest, which helps to reduce some of the effects of the bronchiectasis that has evolved from the damage to the bronchial tubes. This is where we’re at in the approach right now. We’re waiting for another CAT scan in two weeks, and we’ll decide from there if we go back to the drainage for the pleural effusion.

When I was diagnosed, it appeared to be contained to one lobe. So I was able to get surgery and then I followed up with chemotherapy and that’s how it was managed at the time. I continued to manage it with different types of nutraceuticals and traditional Chinese medicine and other types of supplements that are known to be good for anti cancer. I decided on this approach with an integrative care doctor who’s also a medical doctor that used to work at a cancer hospital, but branched out on his own to do integrative care. At the moment I am in between treatments, I just had a scan and I’m waiting to see if I can continue to be monitored, or if I have to make a decision on any type of treatment.

I manage this condition by keeping up with all my doctors’ appointments. I’m very blessed in that my children are able to drive me to and from them. We decided on this approach because we had tried everything else. I currently go for immunotherapy. But I had previously had chemotherapy, which didn’t work. But the immunotherapy certainly seems to be working.

When I was diagnosed since I didn’t meet all of the normal qualifications for traditional lung cancer, they did biomarker testing on me and I came back as ALK-positive. So my doctor put me on alectinib, which is for the ALK mutation.

My current treatment is I am on alectinib, which is a target therapy for my non-small cell lung cancer. And I take six capsules a day, three in the morning, three at night. And that is it for my treatment, and it has been working for two and a half years. Originally, I had a brain met and I had Gamma knife, which took care of that. Currently, I just take six capsules a day. And again, I feel very fortunate that that’s all I have.

I am currently on a targeted therapy medication that I’ve been on for, I guess, the last two years after my active treatment. So I’m using it as maintenance. There’s no protocol for using this medication after chemo and radiation, so it’s a decision that my doctors and I both decided on, because my diagnosis has a very high recurrence rate. So we figured this approach may delay or prevent recurrence, but we just don’t know. We just don’t have any real data, but we thought it was worth trying this approach. That’s what I’m currently doing as treatment for my condition.

I prefer to manage my current condition by seeing a specialist, my pulmonologist. I follow his directions. I came to this decision because I’d rather see a specialist than my primary for any breathing problems going forward. I came to that decision on my own. It wasn’t in conjunction with my oncologist. I just decided on my own that I wanted to see a specialist going forward for anything to do with my lungs.

I’m going to just start with the second part of this question first. When I was diagnosed almost five years ago, the recommendation was a lobectomy followed by partial removal of a second lobe. In the meantime, the results came back that my cancer, lung cancer, is driven by a mutation that there is an effective treatment for it, targeted medication. So I did not have the second surgery and started taking one pill every day. There really wasn’t any choice about how we decided on it. It’s this is what you’ve got. And I knew it was a whole lot better than chemo, which was definitely in my future at that point. And how do we currently manage it? I am really good at denial. I am now, because of the skin side effects, only able to take the targeted med every other day. I have lots of skin side effects, breakouts, cracked fingers, skin blisters, and every other day is I wake up early in the morning, pop a pill, and then I have to wait an hour before I can have any food or coffee or anything like that. It’s really a very benign way to take chemo. Can’t argue about that at all. And again, there haven’t been any choices on this adventure. It’s either do or die.

I’m currently on immunotherapy OPDIVO. It’s working extremely well for me with little to no side effects. Fatigue is always there and there’s always a little bit of, “Oh, there’s a blip there in the PET scan. Let’s try an echocardiogram. The legs are a little weak. Okay, let’s get neurology in this, and oh, I’m seeing something in your chest.” It turned out to be Barrett’s esophagus kind of things, different things. So initially the doctor described the procedures that he wanted, procedure of OPDIVO and immunotherapy, and I agreed. He’s the expert. Only in hindsight, did I discover all of the information regarding it and of course completely agreed with his approach, but I don’t do the research ahead of time. Mostly he does that and I agree. There was one time when I wanted to stop therapy and he completely listened to me and we did and until we got some issues resolved and that worked out very well.

I’m currently taking a break from all my medications for my lung cancer. I was on targeted therapy and I’ve been stable for about the last nine months, but did have a lot of side effects, from headaches to body aches, to eye infections, fevers, pretty much the whole gamut of possibilities. So being stable, we decided that it was okay for me for now to take a break and just keep monitoring it. If I get progression, then I have the option of going back on that same medication rather than waiting for it to decide not to work. So that’s what we’ve done and just still monitoring every three months.

I went through chemo and radiation, initially. And once that was completed, we realized that my tumor hadn’t shrunk at all. So I went into a clinical trial for immunotherapy, and that was my only option. That’s why we had to go that way. I’m currently done with the clinical trial, but I’m being monitored and scanned every three months. I have blood work every few months. And that’s it. Those were my only options.