Real patient stories

I'm Amanda, and I'm living with Stage Four ALK Positive Non-Small Cell Lung Cancer, and I'm a Genentech ambassador. I'm very outgoing. I get a lot out of being social and talking to people. I love having Friday night dinners with my family and cooking and hanging out with my friends and doing fun things.

I would say for the five years prior to meeting my husband, it was just a lot of fun. We have twins, and I have a stepson who lives with us full-time, and he is 14. So we like to take the kids to the farm, and we love to go to the aquarium. My life before kids was a complete 180 from where my life is right now. I was a single girl. I was living in my bachelorette apartment. I had a dog, and I just traveled all the time. I had a really fun life. I really just have always embraced doing fun things and having fun.

I met Chris in June, and then we surprisingly got pregnant in February, and then we found out that the surprising pregnancy was actually twins, and it happened very quickly. My pregnancy was really difficult. I just felt really unwell, and then at some point in the pregnancy, a cough started, and then the cough, it just continued. When I had the C-section, and they told me that when they take the babies out, I'm gonna feel a pressure on my chest, and I did feel a pressure on my chest, but it felt like an elephant. Then afterwards, I was in postpartum, and I kept saying to them, "This cough isn't going away." So I asked for a pulmonology consult, and then that was where they did a chest X-ray. And then when the chest X-ray came back with fluid in my lungs, they transferred me to the ER. And in the ER, they did the lung tap to pull out the fluid from my lung. At this point, I felt very alone and very scared, but I didn't feel like I had room to actually experience any of those things. I just knew I needed to get through the day.

I talked to the pulmonologist from the ER, and the twins were 10 days old at this point, and he said, "This is in fact lung cancer." And I'm like, "This can't possibly be happening to me." In that moment, I went into complete shock. I remember the world going into tunnel vision. I just couldn't think straight. I went and told my mother-in-law, and she was in the back house, and I went back there and told her, and I wasn't even crying at that point. There was no tears. And Chris walks in the door to our bedroom, and he's this big, strong man, and he just had tears pouring down his face. And when I saw him in tears, that was when I finally broke down also. I was like, "I'm never gonna feel good again. I'm not gonna get to see these kids grow up. I'm not gonna get to have this life that I've always wanted."

The diagnosis happened on a Thursday. I had my initial PET scan that Saturday, and I met with the oncologist the following Monday. So we walked in and she said, "What we're gonna do first is we're gonna do biomarker testing. We need to find out the genetics of the cancer." I mean, I had no idea what she was talking about, but she was a light. It felt like years at that point, but it actually was under two weeks. My oncologist called to say that she did have good news, that I did test positive for a genetic mutation and that I was ALK positive. She was gonna be putting in an order for ALECENSA for me, which was the targeted treatment for this genetic mutation. So I drove down there to get it, and I remember taking a picture of the bottle and saying like, "Wish me good luck," and I sent it out to the group chat that had been started, with all of my friends and family on it who were waiting on updates for me.

I take ALECENSA two times a day. I remember at the beginning thinking, "How am I gonna remember to do this?" But I just set alarms on my phone. In the morning, I take it with my coffee, and then I also take it with a date and butter, and then in the evening I take it after dinner. It completely fits into my life at this point. I don't have to think about it anymore. The alarms go off. My routine is my routine. It's just a part of my day-to-day life at this point. My scans have come back really positively. I've had a complete response since starting treatment. I remember the first time that I got it on a PET scan, and then me and my husband after leaving the oncology office, the radiology report dropped into my portal, and it said, "No evidence of disease," and I just looked at him and started crying.

I have experienced some side effects with ALECENSA. I specifically have experienced sun sensitivity, weight gain, and, exhaustion. The sun sensitivity is, has been the hardest of the side effects for me because I used to be more in the sun, but now I just wear a lot of sunscreen and that really helps. I take care of my kids. I'm involved with the stuff that they do with their lives. I go to school with them. I drop them off and participate in all the things that I can in work life. It's so nice to have this life but not have it consume everything where everyone knows about it all the time, that I get to select who I wanna tell people about and what I wanna tell them.

Being a part of a community when this is such a pivotal part of your life is so important. I am a strong believer in finding the people that are going through what you're going through so that you have people that can relate to you. That you can have people to guide you and understand you. I can call these people when I'm feeling down or when I'm feeling stressed out or when I have anxiety about scans coming up, and they know exactly how I feel. And I, because I had some people early on in my journey that were so helpful to me and just immediately knew what I needed, I've tried to do that for others also. So every time there's a new person and they reach out to me, I try to be there for them and listen to them and give them any guidance that I can. You just deal with everything. You can deal with everything that is thrown at you, and I just try to take that attitude that I know that I can handle whatever's thrown at me. I've clearly proven that to myself, and I'm really optimistic about the future and all that it has to hold for me.

Indications. Who is ALECENSA, alectinib, for? ALECENSA is a prescription medicine used to treat adults with non-small cell lung cancer, NSCLC, that is caused by an abnormal anaplastic lymphoma kinase, ALK gene, as treatment when your lung cancer has spread to other parts of your body, metastatic, or to help prevent your lung cancer from coming back after your tumor has been removed by surgery, adjuvant. Your doctor will perform a test to make sure that ALECENSA is right for you. It is not known if ALECENSA is safe and effective in children.

Important Safety Information. What is the most important information I should know about ALECENSA? Everyone reacts differently to treatment with ALECENSA. It's important to know the most serious and most common side effects with ALECENSA. Your doctor may lower the dose or stop treatment with ALECENSA if any side effects occur. Contact your doctor right away if you have any of the following side effects. ALECENSA may cause serious side effects, including liver problems, hepatotoxicity. Liver problems are common with ALECENSA and can be severe. Your doctor will do blood tests at least every two weeks for the first three months, and then one time each month, and as needed during treatment with ALECENSA to check your liver function. Tell your doctor right away if you get any of the following signs and symptoms: feeling tired, feeling less hungry than usual, yellowing of your skin or the whites of your eyes, dark urine, itchy skin, nausea or vomiting, pain on the right side of your stomach area, bleeding or bruising more easily than normal.

Lung problems. ALECENSA may cause severe or life-threatening swelling, inflammation, of the lungs during treatment. Symptoms may be similar to those symptoms from lung cancer. Tell your doctor right away if you have any new or worsening symptoms, including trouble breathing, shortness of breath, cough, or fever.

Kidney problems. ALECENSA may cause severe kidney problems that can lead to death. Tell your doctor right away if you have a change in the amount or color of your urine, or if you get new or worsening swelling in your legs or feet.

Slow heartbeat, bradycardia. ALECENSA may cause very slow heartbeats that can be severe. Your doctor will check your heart rate and blood pressure during treatment with ALECENSA. Tell your doctor right away if you feel dizzy, lightheaded, or if you faint during treatment with ALECENSA. Tell your doctor if you take any heart or blood pressure medicines.

Severe muscle pain, tenderness, and weakness, myalgia. Muscle problems are common with ALECENSA and can be severe. Your doctor will do blood tests at least every two weeks for the first month, and as needed during treatment with ALECENSA. Tell your doctor right away if you have any new or worsening signs and symptoms of muscle problems, including unexplained muscle pain or muscle pain that does not go away, tenderness or weakness.

Breakdown of healthy red blood cells earlier than normal, hemolytic anemia. Hemolytic anemia can happen in some people who take ALECENSA. If this happens, you may not have enough healthy red blood cells. Your doctor may temporarily stop ALECENSA and do blood tests if needed to check for this problem. If you develop hemolytic anemia, your doctor may either restart you on ALECENSA at a lower dose when the hemolytic anemia goes away, or may stop your treatment with ALECENSA. Tell your doctor right away if you experience yellow skin, jaundice, weakness or dizziness, or shortness of breath.

What should I tell my doctor before taking ALECENSA? Before you take ALECENSA, tell your doctor about all of your medical conditions, including if you have liver problems, have lung or breathing problems, have a slow heartbeat, are pregnant or plan to become pregnant. ALECENSA can harm your unborn baby. Females who are able to become pregnant, your doctor will do a test to see if you are pregnant before starting treatment with ALECENSA. You should use effective birth control, contraception, during treatment with ALECENSA and for five weeks after the last dose of ALECENSA. Tell your doctor right away if you become pregnant during treatment with ALECENSA or think you may be pregnant. Males who have female partners that are able to become pregnant should use effective birth control, contraception, during treatment with ALECENSA and for three months after the last dose of ALECENSA. Are breastfeeding or plan to breastfeed. It is not known if ALECENSA passes into your breast milk. Do not breastfeed during treatment with ALECENSA and for one week after the last dose of ALECENSA. Talk to your doctor about the best way to feed your baby during this time. Tell your doctor about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

What should I avoid while taking ALECENSA? Avoid spending time in the sunlight during treatment with ALECENSA and for seven days after the last dose of ALECENSA. Your skin may be sensitive to the sun, photosensitivity, and you may burn more easily and get severe sunburns. Use sun-protecting measures such as sunscreen and lip balm with an SPF 50 or greater to help protect against sunburn.

What are the possible side effects of ALECENSA? The most common side effects of ALECENSA include constipation, tiredness, swelling in your hands, feet, ankles, face, and eyelids, rash, cough. These are not all of the possible side effects of ALECENSA. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at 1-888-835-2555. Please see additional Important Safety Information in full Prescribing Information, including patient information.

Mi nombre es Nathanael. Soy paciente de ALK positivo en etapa cuatro. Es un cáncer del pulmón. Ah, soy un embajador de Genentech. Soy originalmente de República Dominicana y resido en el estado de la Florida desde hace unos veinticinco años.

I am Nathanael's wife. My name is Rosie. I am a Genentech ambassador. We've been together fifteen years, married for ten. We have five beautiful kids, and they are my kids and my husband's kids. Not his kids or my kids, it's our kids.

Este, soy técnico de AC. Trabajé por, por muchos años para, para el Estado, tú sabes, reparando los aires acondicionados.

My husband used to work seven days a week, twenty four hours if he could. I used to work for my church and we were always, always busy.

Nosotros amamos hacer campamentos. Este, por lo regular, este, nos gusta estar todo el tiempo fuera, ¿sabes? Me gusta estar, este, trabajando con, con gallinas, eh, y trabajando con cosas como de estilo country, como el campo. Ese es mi estilo, esa es mi forma de ser.

He, um, very nice to me, very, very loving, caring, takes care of me all the time, makes coffee for me and makes tea at night. And we spend a lot of time together.

Eso creo que Dios a, nos, nos juntó, tú sabes, para, sabes, nos complementamos muy bien.

Our love has grown in a different, more mature way. I, uh, I'm really happy that my husband is still here. We went to New York because our daughters was there for, uh, Thanksgiving and it was cold. It was cold and he started feeling really sick.

De ahí pasó el, el, el tiempo y yo seguía perdiendo peso. Todos los días estaba más, más delgado y no dormía, eh, muchos dolores, mucha flema, mucha inconformidad. No podía respirar.

And, um, my husband doesn't like to go to doctors. But one day he said, "We need to go to the, the hospital." That's when I was like, "Okay, this is serious." And, uh, so we went to the hospital and they told us that they needed to, um, take an X-ray. The doctor comes back and he says, "You have cancer." Just like that. And, uh, I'm like, "Excuse me?"

Eh, Cuando a uno le dicen que tiene cáncer, este, es, uno no quiere aceptarlo. Uno quiere, uno quiere buscar una diferente opinión, este. Entonces, de ahí me, me, nos fuimos hacia la República Dominicana, cuando un doctor me dijo: "Oh, tiene, eh, líquidos en los pulmones".

And, uh, the doctor said he had to get a test and, um, it takes seven days. So I said, "Why seven days? It's just too much." And he said, "Oh, I got to send it to Miami." And I said, "Miami? We live in Miami. Let's go."

Entonces, en, sí recuerdo que cuando me monté al avión ya no podía respirar. Cuando llegué a, a Miami estaba tan grave que me ingresaron de una vez. Duré, este, quince días en el hospital. Entonces, este, de ahí, este, me pusieron una cita con el oncólogo. Yo estoy esperando, tú sabes, le digo a mi esposa: "Cuando hablemos con el on-- con la oncóloga que fue a vernos, que no me diga cuánto tiempo tengo que vivir", porque cuando a ti te dicen: "Tienes etapa, cáncer en pul-- en los pulmones, en ambos pulmones, está en etapa cuatro", ya uno, ya uno no planifica vida, ya uno lo que comienza a planificar es cómo te vas a morir.

So the doctor did say your, your, your lungs have tumors, both, and they are compromised and it's stage four.

Me dice: "Bueno, hay una buena noticia detrás de todo esto, tú sabes, tienes una mutación que se llama ALK, la cual tiene muy buen tratamiento". Salí de ahí con esperanza, tú sabes. No digo feliz, porque en verdad, este, pero sí tiene una, esperanza, antes no tenía esperanza, ¿entiendes? Es muy difícil por la situación que estaba pasando y cualquier buena noticia era, era, era, era importante.

Ten days pass, and I pick up the phone and she said, "The medicine is here." So we drove two hours to go pick up the medicine. And the doctor did talk to us about the secondary effects. She did say that it, there could be a lot of stuff that could happen, you know, like, um, uh, um, the liver problems.

En las primeras pruebas que me dieron después de comenzar, decía que me subió una, una proteína que se llama alcalina y siempre me salía alto, este, pero ya como ha pasado más tiempo, este, mi cuerpo ha seguido asimilando.

Cuando tú te empezaste a tomar la medicina, que te, te tomaste un poquito de espacio porque no, nosotros no nos desayunamos tan temprano, empezamos temprano tomarte la medicina con...

I always sit down with my husband to have breakfast. Eating at the table together is really important. So yeah, breakfast, dinner together, and then at eight o'clock it's his medicine.

Pero creo que me fui adaptando a la, a la, tenía que hacer, ¿entiende? Una de las cosas que más agradecido estoy es que me da más tiempo para estar con mi familia. Pues u-una de las cosas que pedía siempre a Dios era ver el matrimonio de mi hijo, es que era muy importante para mí. Hoy no solo tengo la oportunidad de ver que, el matrimonio de mi hijo, sino que gracias a Dios ya tengo un, un nieto. Y Dios me ha bendecido con eso.

We spend more time together. We enjoy being together. Not that we didn't before, but we didn't have the time to spend time because he was always working and I was working. He makes coffee for me. After that, uh, he gets the eggs from the chickens, and we spend the day outside. We feed the fishes. We walk around the lake. We have a little lake. We don't see cancer as the way it, it was, like something done and over with. And, uh, cancer is no longer a scary word. Yo, yo, eso tú sabes, cualquier persona, que, que tenga la misma mutación, o que tenga la misma, que tome ese mismo medicamento, es un medicamento que le puede, este, sabes, dar esperanza. We're not taking anything for granted. We do have dreams. We make plans. And you love me, right?

Yes, I love you.

Indications. Who is ALECENSA® for? ALECENSA is a prescription medicine used to treat adults with non-small cell lung cancer (NSCLC) that is caused by an abnormal anaplastic lymphoma kinase (ALK) gene as treatment when your lung cancer has spread to other parts of your body (metastatic) or to help prevent your lung cancer from coming back after your tumor has been removed by surgery (adjuvant). Your doctor will perform a test to make sure that ALECENSA is right for you. It is not known if ALECENSA is safe and effective in children.

Important Safety Information. What is the most important information I should know about ALECENSA? Everyone reacts differently to treatment with ALECENSA. It's important to know the most serious and most common side effects with ALECENSA. Your doctor may lower the dose or stop treatment with ALECENSA if any side effects occur. Contact your doctor right away if you have any of the following side effects.

ALECENSA may cause serious side effects, including liver problems (hepatotoxicity). Liver problems are common with ALECENSA and can be severe. Your doctor will do blood tests at least every two weeks for the first three months, and then one time each month, and as needed during treatment with ALECENSA to check your liver function. Tell your doctor right away if you get any of the following signs and symptoms: feeling tired, feeling less hungry than usual, yellowing of your skin or the whites of your eyes, dark urine, itchy skin, nausea or vomiting, pain on the right side of your stomach area, bleeding or bruising more easily than normal.

Lung problems. ALECENSA may cause severe or life-threatening swelling (inflammation) of the lungs during treatment. Symptoms may be similar to those symptoms from lung cancer. Tell your doctor right away if you have any new or worsening symptoms, including trouble breathing, shortness of breath, cough, or fever.

Kidney problems. ALECENSA may cause severe kidney problems that can lead to death. Tell your doctor right away if you have a change in the amount or color of your urine, or if you get new or worsening swelling in your legs or feet.

Slow heartbeat (bradycardia). ALECENSA may cause very slow heartbeats that can be severe. Your doctor will check your heart rate and blood pressure during treatment with ALECENSA. Tell your doctor right away if you feel dizzy, lightheaded, or if you faint during treatment with ALECENSA. Tell your doctor if you take any heart or blood pressure medicines.

Severe muscle pain, tenderness, and weakness (myalgia). Muscle problems are common with ALECENSA and can be severe. Your doctor will do blood tests at least every two weeks for the first month and as needed during treatment with ALECENSA. Tell your doctor right away if you have any new or worsening signs and symptoms of muscle problems, including unexplained muscle pain or muscle pain that does not go away, tenderness, or weakness.

Breakdown of healthy red blood cells earlier than normal (hemolytic anemia). Hemolytic anemia can happen in some people who take ALECENSA. If this happens, you may not have enough healthy red blood cells. Your doctor may temporarily stop ALECENSA and do blood tests if needed to check for this problem. If you develop hemolytic anemia, your doctor may either restart you on ALECENSA at a lower dose when the hemolytic anemia goes away, or may stop your treatment with ALECENSA. Tell your doctor right away if you experience yellow skin (jaundice), weakness or dizziness, or shortness of breath.

What should I tell my doctor before taking ALECENSA? Before you take ALECENSA, tell your doctor about all of your medical conditions, including if you have liver problems, have lung or breathing problems, have a slow heartbeat, are pregnant or plan to become pregnant. ALECENSA can harm your unborn baby. Females who are able to become pregnant: your doctor will do a test to see if you are pregnant before starting treatment with ALECENSA. You should use effective birth control (contraception) during treatment with ALECENSA and for five weeks after the last dose of ALECENSA. Tell your doctor right away if you become pregnant during treatment with ALECENSA or think you may be pregnant. Males who have female partners that are able to become pregnant should use effective birth control (contraception) during treatment with ALECENSA and for three months after the last dose of ALECENSA. Are breastfeeding or plan to breastfeed: It is not known if ALECENSA passes into your breast milk. Do not breastfeed during treatment with ALECENSA and for one week after the last dose of ALECENSA. Talk to your doctor about the best way to feed your baby during this time. Tell your doctor about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

What should I avoid while taking ALECENSA? Avoid spending time in the sunlight during treatment with ALECENSA and for seven days after the last dose of ALECENSA. Your skin may be sensitive to the sun (photosensitivity) and you may burn more easily and get severe sunburns. Use sun-protecting measures such as sunscreen and lip balm with an SPF 50 or greater to help protect against sunburn.

What are the possible side effects of ALECENSA? The most common side effects of ALECENSA include constipation, tiredness, swelling in your hands, feet, ankles, face, and eyelids, rash, cough. These are not all of the possible side effects of ALECENSA. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at 1-888-835-2555. Please see additional Important Safety Information in full Prescribing Information, including patient information.

We take medicine, and every couple months we get scans, and no one else knows that like other patients do, and no one knows what it feels like the same way that other patients do. And you're able to talk to people and sit down, and caregivers are able to talk to other caregivers, and you have this entire community around you of people that know exactly what this feels like to live with this.

Hi, I'm Amanda. I'm from Los Angeles. I'm a ALK-positive patient, and I have three boys and a husband, and I am a realtor by trade.

Hi, my name's Bob. I'm an ALK-positive patient. I'm married with a beautiful wife, and I have four kids, and, currently living in Southern California.

I'm Robyn, Bob's wife. We've been together for over 24 years. We enjoy our grandchildren and all of our children. We have a little corgi that's our buddy.

Hola. Este, mi nombre es Nathanael. Soy del estado de la Florida. Eh, fui diagnosticado con ALK positivo. Tengo cinco, cinco hijos, este, y la mejor esposa del mundo.

Hi, I'm Rosy, Nathanael's wife. We've been together for 15 years, married for 10. We have a wonderful family together.

We're all Genentech ambassadors. Life is really crazy for us in my family. We have toddlers and a teenager, and every day is just trying to beat the clock and get everyone out the door and to school and get everyone home and cook dinner, and we start to lose track of time. Honestly, the days go by so quickly, and it's a lot of fun and a lot of chaos. What about you? What do you do for fun?

Soy una persona que me gusta mucho la naturaleza. Me gusta mucho el campo. Por lo regular, casi siempre me gusta estar en la casa. Soy muy, muy de casa.

He's got 50, 55 chickens. We have thousands of bees. We are beekeepers.

Oh, nice.

Yes, and he – Yes. Well, my journey's changed a little bit from what I used to do. And, you know, I retired, and, a lot of that had to do with some different life experiences, obviously. And I'm in the legal field. I'm working a lot. And when I get home, which is a little bit later than most people would like, we get to enjoy life.

Yeah, cancer, it's a word that nobody wants to hear.

Yeah, that's – you don't want that on, you don't want that on your lapel. You know, 'cause you go back and you think about, you know, that period of time there when you get that diagnosis and-

And you envision, like, what it's gonna look like. That was exactly what I did. And I remember it like I just had flashes in my mind of all the people that I knew that had fought cancer, and it was just so overwhelming to me to think that, like, "Okay, I'm gonna have to do this."

So with my diagnosis, there were a lot of complexities. There were different points that – and this is when you really don't know what's going on. So it got convoluted because I actually had been in a horrible car accident, and so that took some attention off of what I was dealing with. So, so all of these things came to really make a very blurry picture on, you know, not just as simple as going and getting, "Here's your diagnosis." And so that really started kind of the snowball of it taking so long to actually get to that diagnosis.

How long was it from the first point of your first symptom until actually knowing that you had lung cancer?

It was a year and a half. And, you know, there was a lot of missed opportunity.

Mi caso fue un poco co, este, tenía unos síntomas muy terribles. Este, no podía respirar, no podía dormir. Entonces, por mi mente nunca pasaba pensar en cáncer de pulmón, porque siempre se atribuye a las personas que fuman, y pensaba que no era mi caso, que era, que era totalmente para otra clase de persona.

Then we got the answer that we didn't wanna hear, that it was cancer, stage IV, which is, like, stage IV is like, "Hello?"

Right.

Mm-hmm.

What happened to the I and the II and the III?

Right?

Yeah. Yeah, how you just went straight to the IV.

Cuando me, me dijeron que tenía no solo cáncer de pulmón, sino una mutación, sabes, para mí eso es to-totalmente nuevo.

Have you even heard of targeted treatment at your diagno-- like when- at the time that you were diagnosed?

You know, that's a great question because we know, knew squat. We really didn't know anything about it, even from the very beginning of talking about a nodule on my lung. And we're going, "A nodule? OK, that doesn't sound like anything." And so the naivete of all of that, and then you go to professionals to guide you and, and, suggest what you should do or just keep an eye on something, you know, is, you know, it takes a lot of the control out of what you're doing and everything.

Todo lo que conozco de ALECENSA, eh, ha sido totalmente nuevo. Nada, nada de que había un medicamento para tratar un cáncer. Para mí, el cáncer solamente se trataba con quimioterapia, que es lo que solo se habla.

My oncologist was so excited to call and tell me that I had a targeted mutation and that she was gonna be able to put in the order for ALECENSA for me. I think one of the nurses called to discuss the side effects with me, and since then, I have been taking it in the mornings and in the evenings like the rest of us. I do have a timer set as well, and I take it in the morning with a date with butter and my morning coffee, and then I do my evening dose after dinner as well.

Seems to work that way. For some reason, having something, at least that's what he tells me, because when you're taking those pills, he likes to take the peanut butter, kind of wrap it in his mouth- and then do the protein shake. It's kind of a ritual that stuck.

You know what the best part that I have is her reminding me, "Did you take it? Did you take it?" "Did you take it?" So, always reminded, so.

I remember feeling really excited when the dentist was like, "OK, we're gonna do all the dental work," because when I was first diagnosed, they were like, "It's OK. We can just hold off on it." And then when they came back and they said, "OK, let's schedule all of that, the, the crown that you need to have and the root canal that you need to have," and I was like, "You guys have faith that I'm gonna live. This is wonderful."

Yeah. It's one of the things that my husband was worried about, mentally thinking that dreams are not gonna be able to come true. Actually, he works a lot with his mind and realizing that he's alive, that he could, you know, dream again, you know, see our grandchildren and, you know, do things.

Indications. Who is ALECENSA, alectinib, for? ALECENSA is a prescription medicine used to treat adults with non-small cell lung cancer, NSCLC, that is caused by an abnormal anaplastic lymphoma kinase, ALK gene as treatment when your lung cancer has spread to other parts of your body, metastatic, or to help prevent your lung cancer from coming back after your tumor has been removed by surgery, adjuvant. Your doctor will perform a test to make sure that ALECENSA is right for you. It is not known if ALECENSA is safe and effective in children.

Important Safety Information. What is the most important information I should know about ALECENSA? Everyone reacts differently to treatment with ALECENSA. It's important to know the most serious and most common side effects with ALECENSA. Your doctor may lower the dose or stop treatment with ALECENSA if any side effects occur. Contact your doctor right away if you have any of the following side effects. ALECENSA may cause serious side effects, including liver problems, hepatotoxicity. Liver problems are common with ALECENSA and can be severe. Your doctor will do blood tests at least every two weeks for the first three months, and then one time each month, and as needed during treatment with ALECENSA to check your liver function. Tell your doctor right away if you get any of the following signs and symptoms: feeling tired, feeling less hungry than usual, yellowing of your skin or the whites of your eyes, dark urine, itchy skin, nausea or vomiting, pain on the right side of your stomach area, bleeding or bruising more easily than normal.

Lung problems. ALECENSA may cause severe or life-threatening swelling, inflammation, of the lungs during treatment. Symptoms may be similar to those symptoms from lung cancer. Tell your doctor right away if you have any new or worsening symptoms, including trouble breathing, shortness of breath, cough, or fever.

Kidney problems. ALECENSA may cause severe kidney problems that can lead to death. Tell your doctor right away if you have a change in the amount or color of your urine, or if you get new or worsening swelling in your legs or feet.

Slow heartbeat, bradycardia. ALECENSA may cause very slow heartbeats that can be severe. Your doctor will check your heart rate and blood pressure during treatment with ALECENSA. Tell your doctor right away if you feel dizzy, lightheaded, or if you faint during treatment with ALECENSA. Tell your doctor if you take any heart or blood pressure medicines.

Severe muscle pain, tenderness, and weakness, myalgia. Muscle problems are common with ALECENSA and can be severe. Your doctor will do blood tests at least every two weeks for the first month, and as needed during treatment with ALECENSA. Tell your doctor right away if you have any new or worsening signs and symptoms of muscle problems, including unexplained muscle pain or muscle pain that does not go away, tenderness or weakness.

Breakdown of healthy red blood cells earlier than normal, hemolytic anemia. Hemolytic anemia can happen in some people who take ALECENSA. If this happens, you may not have enough healthy red blood cells. Your doctor may temporarily stop ALECENSA and do blood tests if needed to check for this problem. If you develop hemolytic anemia, your doctor may either restart you on ALECENSA at a lower dose when the hemolytic anemia goes away or may stop your treatment with ALECENSA. Tell your doctor right away if you experience yellow skin, jaundice, weakness or dizziness, or shortness of breath.

What should I tell my doctor before taking ALECENSA? Before you take ALECENSA, tell your doctor about all of your medical conditions, including if you have liver problems, have lung or breathing problems, have a slow heartbeat, are pregnant or plan to become pregnant. ALECENSA can harm your unborn baby. Females who are able to become pregnant: Your doctor will do a test to see if you are pregnant before starting treatment with ALECENSA. You should use effective birth control, contraception, during treatment with ALECENSA and for five weeks after the last dose of ALECENSA. Tell your doctor right away if you become pregnant during treatment with ALECENSA or think you may be pregnant. Males who have female partners that are able to become pregnant should use effective birth control, contraception, during treatment with ALECENSA and for three months after the last dose of ALECENSA, are breastfeeding or plan to breastfeed. It is not known if ALECENSA passes into your breast milk. Do not breastfeed during treatment with ALECENSA and for one week after the last dose of ALECENSA. Talk to your doctor about the best way to feed your baby during this time. Tell your doctor about all the medicines you take, including prescription medicines, over-the-counter medicines, vitamins, and herbal supplements.

What should I avoid while taking ALECENSA? Avoid spending time in the sunlight during treatment with ALECENSA and for seven days after the last dose of ALECENSA. Your skin may be sensitive to the sun, photosensitivity, and you may burn more easily and get severe sunburns. Use sun-protecting measures such as sunscreen and lip balm with an SPF 50 or greater to help protect against sunburn.

What are the possible side effects of ALECENSA? The most common side effects of ALECENSA include constipation; tiredness; swelling in your hands, feet, ankles, face, and eyelids; rash; cough. These are not all of the possible side effects of ALECENSA. For more information, ask your doctor or pharmacist. Call your doctor for medical advice about side effects. You may report side effects to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch. You may also report side effects to Genentech at 1-888-835-2555. Please see additional Important Safety Information in full Prescribing Information, including patient information.

I think if I was talking to someone who was newly diagnosed, I would tell them not to Google search anything, to stay away from it, and that there's a lot of hope out there. You know, that the shock and awe that they're experiencing in this current moment, it won't last forever, and that there is a new normal out there. You just have to get to it. It just takes time to get to the new normal.

Love that. I would say that you're obviously gonna be very overwhelmed, and there's so many people that will love you through this process, that will help you, that will counsel you, that truly understand, and you won't be judged by the community of what you're dealing with.

Mm-hmm. I completely agree with that. I think the more that you find people who understand the struggle, the easier the struggle becomes, the more open your life can become because of it. I think that that's such a huge thing for newly diagnosed people to know, is that you don't need to keep this a secret, that there's a lot of people out there that can help you and understand you in a way that, that not many other people can that are in your life currently. There's so many people out there. It's really a great thing to be able to help others that are newly diagnosed. I remember that when I was first diagnosed, I had someone in the community also that I was talking to, and I thought to myself, "I just, I just wanna always be able to give back to this."

Para mí, este, reunirme con personas que tengan la misma condición, que tengan ALK positivo, pensaba que iba a ser muy difícil. Este, me sentía, qué reacción tiene cada persona. Pero de verdad me siento sumamente feliz de ver que hay personas como yo. O sea, hay personas como yo que están luchando, que tienen la misma condición y que posiblemente tengamos muchas cosas en común.

He was afraid and worried about telling people his story and saying, you know, "Just like you, I, I have cancer," because cancer is such a scary word. But now we know that cancer doesn't mean I'm dying tomorrow.

Right.

That there is a hope, and we have to take advantage of this blessing we have now.

Good. You're helping people, too. You have to look at it not necessarily even from your own perspective of, "I don't wanna do this," or, "I'm scared," but remember that there's someone out there that needs to hear your story, that needs to hear a Spanish speaker talking about their ALK-positive cancer and their journey and what it's been like and that there's hope for them out there also.

Pensando en la comunidad hispana, para nosotros, la, la sociedad hispana, eh, decir "cáncer" es "Te moriste. Ya no hay esperanza." Eh, pero hay muchas oportunidades. Y la esperanza que tenemos según yo leo es que estamos progresando todos los días más.

I think for me, when I was first diagnosed, I just tried to do everything all at once because I was so afraid that there wasn't gonna be any time left. It was really hard to do everything to, to fulfill an entire lifetime. And I think that what me and my husband like to do is just make plans and then get to look forward to those plans, to go on little vacations together, to celebrate a milestone. I really try to have gratitude every day, even for the smallest things, and I think that it makes even the mundane days of life, of just the routine, still something that it's like, "Hey, the sun shined today," and, "I got to put my kids to bed." And, you know, these are the smallest things that are just, so many people just take for granted that I think that we just don't take for granted anymore.

Yeah.

So that's how I think I look at life. How do you think that you look at life?

Disfruto mucho el tiempo con mi, con mi familia. Este, a las cosas pequeñas les pongo más atención que antes. Tengo más tiempo para analizar las cosas, porque cuando uno está prácticamente sano, no valora muchas cosas. E incluso la familia. La familia, uno, uno, uno dice: "Oh, lo voy a hacer luego," cuando en verdad hay, hay que sacar un momento para la familia, hay que sacar un tiempo para eso. Y yo disfruto cada momento.

And, as for what he told me at one point or another is that he had lost dreaming, all the dreams, but now he doesn't. You know, he, he understands that life is short, and he, he makes plans. We travel a lot and enjoy doing little things now. And, and for me, I enjoy watching my husband, even when he's snoring and he doesn't let me sleep. I'm like, "Thank God he's snoring."

He's snoring.

Exactly. You know? I love him...

And I would say for me, you know, today I'm at the point of real acceptance, versus denial of, "This really did not happen to me." Did it, did it change the course of life? It really did. I mean, it really has.

Yeah.

You know, and there's that, you know, that emotional part, you know, that we're even talking about and everything, and the realities is, is that where we could be versus where we are.

Totally.

Now, those are real, real things. We're not fighting it and beating it. We're living with it every, every day.