"How Did I Get Lung Cancer?" Being a "Super Dad" While Living with Stage 4 Lung Cancer (Dan's Story)
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- Опубліковано 3 лип 2024
- Dan W. has a wife and 2 young daughters and is known as a “super dad. But at 34, he started feeling short of breath, tightness in his chest and lost his voice. After undergoing a number of tests and being pumped with steroids and inhalers, he was then diagnosed with stage 4 ALK+ non-small cell lung cancer.
In this story, he shares the importance of patient advocacy, sharing your story and experiences, having doctors in your corner and willing to fight for you and being honest and open with your children.
The interview has only been edited for clarity.
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Full story & transcript → www.thepatientstory.com/patie...
Contents of video
00:00 - Intro
02:10 - Describe your first symptoms
06:48 - Receiving the news & thinking about your kids
07:44 - Getting the official diagnosis
10:42 - Reaction to the diagnosis
13:31 - Treatment: Radiation and targeted therapy
16:31 - Importance of biomarker testing
17:46 - Advocating for yourself
21:34 - Targeted therapy
23:04 - Side effects from Alectinib
24:46 - The White Ribbon Project
27:25 - What does it mean to you and your family to have that?
28:22 - Sharing your cancer story from a father’s perspective
30:04 - Living with cancer as a parent with young children
#lcsm #lungcancer #nonsmallcelllungcancer #lungcancersymptoms #LivingWithLungCancer #lcam #whiteribbonproject #cancerstories #cancerpatient #cancersurvivor #patientstories #thepatientstory
Living with an incurable disease is so hard, but you just have to live life day by day as it goes by (Cancer sucks)
@jay pritchett wow, found her website, thank you very much for this.
@@juanderuano8969 Шалом вам! Кого вебсайт ви знайшли?
My son in law was diagnosed with stage 4 lung cancer, I am so sorry for all the very young, young, and older people who are diagnosed with cancer. I had no clue so many young adults are diagnosed with stage 3 and 4 lung cancer. My son in law was sick too, like this young man years before diagnosed. I believe it’s all environmental, we can’t buy anything, eat anything, that we don’t hear causes cancer. We need to realize, if air that we breath, the food we eat, the clothes that we wear, the chemicals we use isn’t only hurting the earth, and the animals, it’s hurting us. Do what you can to be mindful, if it hurts the environment it will hurt us too. My son in law just took that test to see if he may have passed the gene to his daughter, we haven’t got the results yet, but she has a huge chance of getting cancer, because of our environment. I am 62 years old, when I was a child I knew two people during my entire childhood who had cancer, they both lived in the same mobile home. My brother died with cancer 3 years ago, he worked in the oil field. My son in law was an appliance repairman for 20 years. I was diagnosed with thyroid cancer several years back. My point being, anyone who reads this knows several people who has cancer. I believe it’s because environmental, the things we do, eat, wear, and use are made with cancer causing chemicals, materials etc. My heart aches for this young man and his family, as it does for the many children, adults, and elderly who I follow, so I get a since of what my son in law may go through. Most all that I follow are in late 20’s, my son in law is 41, we are losing great people to lung cancer, as well as the many other types of cancer.
Sunshii Cattara no one cares
@@meahdahlgren6537. HOW😡 DARE😡 YOU ABUSE😡😡 A CANCER 😡PATIENT 😡
So true our environment/vaccine's/food we eat.
@sunshiicattara6410 Шалом вам! як ваш зять тепер?
@sunshiicattara6410 Shalom to you! How is your son-in-law now?
I was diagnosed with stage IV non small cell lung cancer in June of 2016. I am still here November 2022! I am showing no sign of disease for the last two years. I began Keytruda February 2017. I stopped in September because not showing disease anymore and insurance stopped paying for the very expensive treatment. So I just had a pet scan last Monday and tomorrow I go for the results. I am praying it is still showing no evidence of disease.
Perhaps you could ask for Keytruda. For me it is a miracle drug.
Good luck to you and a prayer your way!
I hope you stay cancer free forever
Hey what were your results? Do you mind sharing with us?
Congrats!! That’s amazing! Unfortunately Keytruda doesn’t work well for ALK but I’m happy to hear you are doing so well!
How are you now? I pray to God to cure you completely.
What was your results if don’t mind sharing? My little brother was diagnosed with stage 4 squamous cell carcinoma in 2020 had a large tumor and 5 lymph nodes, he took some of the strongest chemo and radiation then he was cancer free. Then 2021 he had a tumor in his neck come up and it was thyroid cancer had to have both sides removed then that was that . Then started getting skin cancer and had those removed. August 2022 he woke up around 3am heart was racing and beating funny went to ER they done test and said your heart is completely fine however, we found a mass in each lung and had more test plus biopsy results showed he had stage 4 lung cancer so we’re in Atlanta Ga at the Cancer Treatment of America and be just finished chemo and radiation then had PetScan and it showed regression and the treatment worked for Thor original spots and those are stabilized and he’s doing immunotherapy but, now it’s spread up to his neck and they found huge spot on his diaphragm. They just did MRI on brain make sure it hasn’t spread there and done biopsy of the neck so we’re nervously awaiting the results. We lost our Brother to Stage 4 colon /liver cancer and our Daddy of Lung Cancer and now he’s fought 4 different kinds in two years. Anyone that prays plz pray for him . Sorry for such a long comment. I wish you the best as well as anyone else that’s fighting just like the Guy in the video. There’s too much cancer it’s absolutely scary
Wishing everyone with a serious illness,a speedy recovery,and a quick comeback to his loved ones.
Thank you for sharing your story… I completed (3) cycles of Chemotherapy (the tumor decreased by almost half)and this Tuesday I will have surgery to remove a lobe, and the remaining tumor.
look into fasting. Watch Dr Bergs vid interivew about fasting cancer.
🙏🏼 I wish you the best for your surgery 🙏🏼❤️
My wife had a lobe removed…it worked out very good…good luck.
Praying for a successful surgery and speedy recovery 🙏❤🙏❤❤
Thinking of you, Ruth! ❤
My grandmother, my mom's mom was diagnosed with small cell lung cancer in 2017, she had beat it once, but unfortunately it had returned and ended up being very aggressive. She was a petite woman to begin with, but with her lung cancer it had made her extremely extremely sick and weak to the point where she couldn't stand and walk anymore. Seeing her deteriorate fast was very hard. My mom and whole family and i had spent as much time with her as we could because we didn't know how long she had to live. She fought for her life as much as she could; she passed away at the age of 77 on February 25th, 2020. There isn't a day that goes by that I don't think about her. I miss her so much. I know that she's in a much better place. I was very fortunate i was there while she was in hospice to hold her hand and just let her know that i loved her. I will always be grateful for everything that she had done for me throughout my life. I will always love her and keep her in my heart forever ♥️
So did my grandmother and Father and Mother. I am 33, move on you alive i have weeks to live, she was 77, jeees go away.
My dad was diagnosed whit lung cancer,after 7days he passed and i never got to say goodbye.
So, I want to share some about my cancer journey, hopefully it’s encouraging. I was diagnosed at age 64, ALK +, through pleural effusion, which filled my pleural area. I had symptoms at least year earlier, the primary at the time ordered x rays and it ended there. Both her and x ray tech reading the X-ray missed it. Symptoms kind of subsided, and being resilient I went about life, till I could not walk from my bedroom to the kitchen. I landed in ER. It took about 3 weeks to get full results of testing, which was ALK+ stage 4. I had the fluid drained and went home to wrap my head around the whole thing. docs in hospital wanted me to start treatment before I had full testing results. I declined. Took about 3 weeks of deep diving, researching, then made an oncology appointment, in local community center and at Moffit as well. Both said the same thing. I chose local one for convenience, less travel, less stress. I was told they don’t have treatment for me at stage 4, metastatic, but they can offer me palliative care, to make me more comfortable. The pulmonary doc told me to go home and get my affairs in order, I may have little more than 6 months. Well, I was feeling good once the fluid was drained, but it would return, therefore I had a procedure pleurodesis, hopefully resolve that issue. Since they only had pain meds for me, I had no pain,I went home and decided I will be clear headed if I am going to have this short life. Oncologist agreed to see me monthly, monitor my status, blood works, scans. To everyone’s surprise I took no meds for 10 months and was fine. I did a whole bunch of holistic, nutritional things and still do. When my markers started increasing, I started targeted med which made me very sick at first dose, so I researched and came across a Specialist in ALK + at Boston Medical, her name is Dr. Alice Shaw. At one of her presentations online, she said 2/3rds of her patients can’t tolerate the full dose. I researched the clinical trials, looked at how many participants did well...and decided I will take half the trial recommended dose. Oncologist was not happy with my decision. I made it clear it’s my life my cancer, I will always hear him out, and will go home think about it before I will take the recommended course. I lasted about 6 mo this med. That first line med stopped working, then I insisted on having a biological blood testing, before I took the second med, Alecensa. I did well and again, I took only half the dose. There were side effect, but tolerable, I could have quality of life. The change in meds is due to new mutations that cancer develops, not because of the dosages. Confirmed by oncologist and testing. My liver and kidney markers on monthly reports came down when I took half doses of meds. I have at least twice took a holiday from meds for about 2 months when all was well and I felt good. Give my system a break fro. The chemical assault. I am on a third generation med, Lorbrena, started with half dose and cut down to 1/4 dose when all my blood work and CEA markers stayed in normal range for about 6 months. I do fast mimicking cycles monthly. Some months I am very good and some are harder to stay fasted for3-5 days. I continue researching, incorporate lots of variety into each meal in way of nutrients from raw nuts, flavonoids and polyphenols from fruits and veg plus spices. I grow some of my herbs in pots for convenience. I dont let them keep scanning me, exposing me to unnecessary radiation, which in itself is carcinogenic. I am paying close attention to me blood work and how I feel, spread my scans about 10 months apart to satisfy the oncologist who had a responsibility to follow standard of care protocol. I exercise, mostly jogging in the deep end of community pool. My goal is do a mile at least 4-5 times a week. I feel better when I do it. I listen to lots of podcasts on you tube, all highly respected doctors in all kinds of fields. I learned an awful lot . My inbox is always 98% full, cause I subscribe to receive so many medical newsletters, papers. Time consuming, Not all easy to understand, but after a while I learned lots of medical jargon. I’ll end on a positive note. I am now 71, live alone, manage very well, have good quality of life. So I am still here, thriving, 6.5 yrs after they told me to go home and get my affairs in order. Yes, be your own best advocate. Cancer is not a heart attack that takes you out instantly. You are young, have lots to live for. Lots of Medicine can kill the cancer cells but not the cancer stem cells. So find a way to live in harmony with nature, instead of waging war on your cancer. Nixon in 84 or 85 declared war on cancer, we still did not eliminate it. So, eliminate processed foods, do your best to eat organic if budget allows. Prep your meals, with lots of nutrients. My pantry is full of all kinds of herbal teas, dry mushrooms, and other kinds of powdered foods that I can add in small doses to my salads, beverages, stocks. Find something good even in this diagnosis. Every cell in your body is paying attention and to your thoughts😊. Find a way to coexist with your present cancer and try to get back to nature as much as you can., do your best to not live in fear. Think welll, be well. I k ow you can do it and have good results. I fired 2 primaries, only have an oncologist and found a way of communicating with him, respecting his position and he mine.
Best advice ever. There us a HUGE body-mind connection. Don't let anyone tell you how long you have to live or how to do it. And live with a positive mindset. Even if you have a 5% chance, you can be that 5% so never give up. Besides 5% of millions is quite a few people... Best health always.
Thank you! Dr Shaw is actually one of our doctors- we are so fortunate to have her. We agree outlook is everything! Wishing you best of luck in your ALK journey- our ALK family has changed our outlook tremendously ❤
@evafrank7019 Шалом вам! Як ви зараз?
@@brittanywilson7179 Шалом вам! У вас хтось хворів на онкологію?
@evafrank7019 Shalom! How are you now?
Hope Dan is fully recovered and enjoying time with his lovely family
At stage 4, it becomes a control not cure situation
There is no cure it's stage 4
No cure for stage 4
Too far gone
Sending prayers.and to all who is battling cancer.lost my best friend with pankrice cancer.i had breast cancer left side last year.they said they got it all.i pray they did.
Pancreatic
I would love to have heard the conversation with his primary care doctor when he found out that he had lung cancer. I have heard, don’t trust anyone but yourself when dealing with your own body. You know your body better than anyone else. Bless you!
Always get a second opinion. It saved my life.
Seems like such a kind man.
Saying prays for you and your beautiful family! ❤🙏🏻
What a wonderful man, and his awsome family! I'm thinking of you, and praying for you. Remember.....NEVER GIVE UP!
Great interview ❤
Very inspiring! Best of luck to you!
This really upsets me. I smoked for 42 years, started at 13, and never even had a cough. Stopped two years ago with the help from nicotine vapes. If anyone should have cancer, it's me. Of course i may have something growing right now and be unaware. I'm so sorry for all young people going through this and i feel guilt. In
Amazing!! My sister was diagnosed last October 5,2021 and passed away April 2022 💔Small cell lung cancer. And she had started hurting in her shoulder and the doctor thought she had pulled a muscle.
Too sad…small cell LC is hard to treat..
I’m so sorry for your lost!! I have shoulder pain and no doctor believes me, they all say it's the muscle and I feel like it's more than that I have LEMS. This’s crazy
@@LIZZIE70374 I am so sorry. Please stay on top of that!! I will put u on my prayer list! When she got worse her pain in her shoulder was unbearable 😢
@@supernovahm1178 really is so sad.. cancer sucks. Our dad died of lung lung cancer in 1981. He was 47. My sister had just turned 66 in March.
Now my daddy had two other brothers they both passed away with lung cancer 💔
@@sauzzielumpkin My pain is unbearable, there are days that I can't wash or comb my hair, can you imagine that they sent me to have an x-ray and just because it came out normal now they ignore me I have nerves damaged in my elbow I'm also so frustrated right now
Alot of information! Great video!
The Neil Young song “Long May You Run” That sentiment comes to mind. Long May You Run!
Beautiful family will keep u in my prayers 🙏✝️
God bless you hun may the Lord shine upon you and your family.
My bro passed in 2021 from lung cancer at 46yo...he had radiation n surgery only but passed...much info n therapies have changed today n help patients
🙏🙏🙏🙏
How sad. This poor man has been through the mill.
May God bless you!
Dan,
Heartbreaking story. I will add you to my prays. My 69 year old sister has the same diagnosis as you. She was diagnosed in 2019. I would live to know how to get a ribbon🙏🏻😘
How is your sister now?
You will get stronger everyday. I’ve heard some cancer patients receive IV C. Usually at a homeopathic type of center. I know IV C be very helpful treatment. Best to you as you strengthen everyday ❤
Wow. One thing I DO like about my oncologist - he doesn't read radiologist reports. He reads the films themselves. Once he comes to his own conclusions THEN he reads radiologist's report to see if he missed anything.
A friend’s daughter was diagnosed with month cancer at 32. She had surgery and radiation and was given the all clear. 3 months later she developed a persistent cough. She was diagnosed with stage 4 metastatic lung cancer. Underwent radiation & chemo. She lived for only 3 months. Never smoked, social drinker, fit, healthy, …
This was a very powerful and inspiring interview.
What a great guy and provider. NEVER allow docs to rush a quick diagnosis and throw pills at you. Be your own advocate. Push for scans sooner than later. Docs are smart but they are limited on time due to the system. It takes months or years for them to escalate after they see a long medical history. This is due to insurance not wanting to pay initially too. Not saying get a CAT scan if you have a cough once- but again, sooner rather than later if something drags on beyond say 2 weeks.
So many younger people getting stage 4 lung cancer with secondaries. A friend's hubby has it although he is older and in his 60s, but yet i see so many younger people with young families going through this, few of them have anything in their history that would imply they would ever be in this position. So what's going on, what's in the atmosphere, what's in the food chain, there is something more to these cases.
oh stfu lmao, I bet you dont give a crap about what you eat, about climate change etc. Ever been to any protests against oil ? Of course not
It's a Worldwide problem.. too many cars. Car exhaust all over the place . Filthy dirty air water and soil.. the human body wasn't design to live with these chronic environmental issues.. we will all pay for it on one way or another
Jane Mclelland's book 'How to Starve Cancer' and then kill it with Ferroptosis. She hand lung cancer stage four like 20 years ago (she is still alive today cancer free). Don't let the white coats control you. Fight. Pray. Eat healthy. Drop sugars to zero, lots of vegetables, low protein and healthy fats. Keep exercising. Practice stress reduction technique. Research Water Only Fasting and cancer. Do your own research. DM me if you need further info on stage four. Trust me, I know pretty much how you feel. Peace.
Can you help me my mum s at stage 4 lung cancer
At least you got help they found two tumors in my lungs 3 years ago. They didn't even talk about dealing with it when I was seeing the doctors.
I pray you are better now
Something about the title of this video prompts me to say that I just watched a video about RADON causing lung and other cancers in otherwise healthy people in Utah. Have you had your home tested for RADON?
Yes- tested for radon as soon as he was diagnosed to ensure it wasn’t that. Thanks for checking- it is definitely a factor for other lung cancers but not his.
🙏🏼❤️🙌🏼
I was diagnosed with stage 4 ALK+ lung cancer back in August and am on the same targeted therapy drug. The first oncologist I saw wanted to start me on chemo immediately.
Fortunately, I had read many, many books on cancer before my diagnosis (as a Lynch carrier, cancer is something that has ravaged my family for decades), and I was hell of a lot more knowledgeable than this oncology "expert" I was paired up with. Chemo is a treatment of last resort. I wanted the liquid biopsy done first. By the end of the appointment, I was already setting up a new appointment with a completely different hospital.
Be your own advocate; many of the doctors in the oncology world work from a script, and they're not interested in knowing what you know about the subject.
LOVE your message and experience os self-advocacy! Would love to chat with you about your experience - will you email us at stephanie@thepatientstory.com & alexis@thepatientstory.com?
The questions reporters ask are horrendous! Why would you ask how it made you feel when you received the diagnoses? No one needs to tell anyone that!
I pray that all the patients will have speedy recoveries n complete healings.
I pray for God's strength and comfort to be with them and their families always!
How do we get one of those big ribbons?!?
You can get lung cancer purely from all the environmental pollution that we all live in and not just through smoking or second hand smoke. Much has been done in the UK to try and protect people from second hand smoke such as no smoking in bars, clubs, restaurants and places of work but very little is being done about environmental pollution. Easier to pass the buck on smoking rather than put money into tackling the dreadful pollution that’s all around us.
If you have lungs you can get lung cancer, it’s not always from a cigarette as most people think
I love you Stephanie 😘
I know I've said this before but you are doing far more than "making content"... To call this content would be an insult. I wish nothing but good for you in your life.
Dark times will pass! and everthing will be fine ..
You can’t just listen to this with your eyes closed. Half of everything is taped on the screen
20% of people diagnosed with LC never smoked.
8%
When I see people out running next to roadways I cringe. Breathing deep near car exhaust is definitely a risk for cancer
What breed of dog is the big one ?
♥️
🙏🙏🙏🙏🙏🙏🙏
There are more info on fenbendazoleorg resource.
Why a CT was not done sooner !
From some people experience Doctors usually have to have a reason to have a person take a ct scan
Як Dan сьогодні? Хтось може дати його контакти у facebook or e-mail?
What does ALK stand for?
anaplastic lymphoma kinase
@@brittanywilson7179 Thanks.
I would have reported that oncologist. What that person did was horrendous and not doing their job.
I have stage 4 lung cancer, inoperable. I have not shared with children or grandchildren. Nor all but one friend. I don't understand how any one can burden others with their medical issues. If I had a wife I probably wouldn't have told her. She went with Pancreatic Cancer.
Only hope is pray .Take bible and read the book of John ,it will help you with your faith in Jesus of Nazareth
I will keep you in prayer
Be strong and don't give up ,Jesus loves you
and black beard dye wont help at at all, i have lung cancer, my advice STOP using it, the stuff it contains, stop vanity and fight the big fight.
YES HE IS RIGHT WHY WOULD YOU WANT TO FOCUS ON TELLING FAMILY MEMBERS RELIVING THE EMOTIONAL TRAUMA OF IT ALL GET TO TO THE SOLUTIONS HERE PLEASE FOR THIS MAN! SERIOUSLY! CHILDREN ARE INNOCENT AS THIS MAN WAS TOO. I DONT LIKE HER QUESTIONS HERE CAN SHE ASK WHAT THE DR'S CONCLUDED WAS THE CAUSE HERE FOR THIS HEALTHY YOUNG MAN????? IRRITATED HERE BY THESE QUESTIONS. NOT SOUL HEALING I WOULD SAY FOR FOLKS WITH CANCER WATCHING THIS VIDEO HERE! BLESS HIM AND HIS FAMILY ONGOING!