|Nov/Dec 2016 – Banff Canada Gondola|
This is my story as a patient and treatment side effects, Lung cancer blog written by a man with terminal EGFR Lung Cancer, Stage IV.
Lung Cancer blog also known as lung carcinoma, my symptoms, treatment & how I am dealing with the EGFR drugs side effects. But firs of all please note that the last thing I want to live is my death, so everyday I try to forget my sickness and enjoy to the maximum the family God gave me; an incredible and beautiful wife and 3 amazing daughters!! Thank’s a lot to my immediate family, my sons in law, and my two grandsons for everything you’re doing and the sacrifices you have made…I’m Ok, It’s just Lung Cancer.
What is Cancer of the Lungs?
In March of 2015 I was diagnosed with metastatic cancer stage IV and was told “Count your life in months and not years.” So imagine me sitting there together with my wife and tree daughters thinking “What is Cancer of the Lungs? But after the physician’s gave us the bad news I decided to have lunch at a nice & fancy restaurant, we ate, we laughed and also…we cried.
Hours after I learned that Lung Cancer is a malignant lung tumor characterized by uncontrolled cell growth in tissues of the lung. Well, two years later, I can say I know I still have cancer, but I’m living my “new normal” symptom free and doing very well! That’s one of a few reasons that compels me to start this cancer blog.
Lung Cancer Types, Stage, Symptoms and Treatment
It all started with pain in my left leg, I remember my wife would rub pain relieving cream like “Icy Hot”® and it did not seem to make a difference. I went to the doctor a few times and they did an X-Ray – that believe it or not, did not show anything! Opportunely my family doctor said, “I am going to send you for a bone scan.” After hearing from the technicians that they would be running 3 additional tests, lead me to believe this was all more serious. It turns out the first sign of cancer they found in my body was in a bone lesion.
The bone was so bad, I was told I would need a half hip replacement before it would brake, and so it all began. They did an X-Ray of my chest which showed us the cancer was in my lungs as well. The next test was to do a CT Scan of my chest and abdomen, where they could see it had spread to the liver and several other organs. At this time it truly felt like our world was encroaching in us and that the cancer was rampant. After three biopsies and many tests, doctors narrowed it down and told me the cancer had all started in my lungs.
They told me there were two possibilities on types of lung cancer I had; one, the cancer we all know where you receive traditional chemotherapy that targets all cells, and life span can be severely limited, and the other is a EGFR mutation (non-small cell lung cancer) which, I had never heard about. I was told having this type of cancer was like “winning the lottery of lung cancer” as a very low percentage of people have it, and it meant less aggressive treatment and possibly longer life. After feeling I did not have much time left, I was at the mall looking all the people buy stuff and thinking to myself “why bother in buying something new” when I received a phone call from the oncologist and it turned out I did have what is called EGFR lung cancer.
EGFR Lung Cancer
(EGFR lung cancer is one of the types of lung cancer that don’t use chemotherapy; knowing the cancer type is important because it affects your treatment and longevity)
Lung Cancer Radiation
After the half hip replacement and radiation for the cancer in my left leg, I went through a new treatment that would deal with the remaining cancer in the bone. This was done though a small surgery called an ablation where they freeze the cancer lesion and by freezing it it burns it to slow down the growth. All this to finish with the problem in my leg. I was walking the two days after the surgery, by myself.
I was then referred to a specialized oncologist for this type of cancer, she has been fantastic as she journeys with us. At our first meeting, she recommended I start with a drug therapy called “Afatnib®” made by GIOTRIF® in May 2015, and although I experienced quite severe side-effects at first, with the right information these became tolerable. Afatnib® targets the specific cells that are affected by cancer rather than all cells like traditional.
My family has maintained an e-mail update list, where we keep our friends and family up to date with e-mails – that way everyone understands where we’re at, while also avoiding feeling overwhelmed by the need to stay connected with everyone individually. My 3 daughters and 2 sons in-law have all made incredible sacrifices to be there for me and my wife. My 2 grandsons (3 years old Fernando and 3 months old Diego) have been a joy to have around, they have helped me through this, more than they will ever know.
Lung Cancer Treatment and Side Effects – EGFR Lung Cancer
It took a bit of trial and error to manage the side effects so I could stay on the treatment, but Afatnib® has truly been an answer to prayer. For others who are beginning or are in the process of taking Afatnib® below are a few lessons I have learned along the way to manage the side effects you may encounter:
– Imodium® tablets do wonders for balancing my system on Afatnib®. Interesting enough, the white tablets (Imodium Complete) are the ones I respond to rather than the green capsules. Sometimes if I am out of town or if I know a bathroom might not be nearby, I take one or 2 Imodium® Complete in the morning as a preventative measure.
– Lactaid® 3 extra strength, before taking the Afatnib® every night, at the beginning I did not know the medication alone had lactose and this made such a big difference to me as I was only slightly lactose intolerant before the medication but more so now on the medication.
– Living in a very dry climate, I find it indispensable to use humidifier right next to the bed in my bedroom, after a few trials I found that the BONECO® Warm or Cool Mist Ultrasonic Humidifier Air-o-Swiss 7135 humidifier is the best and I’m using it every night.
– I have found NeilMed™ Naso Gel Spray and NeilMed® Pharmaceuticals Sinus Rinse™- to be effective in avoiding nose-bleeds.
– I try and keep my skin hydrated with Avène® SkinCare Products for Sensitive Skin Care as well as “Calm Down Mask” and “Face Cream” Canadian Natural skin care products by Skoah®.
– I take Gilotrif/Afatnib® at night before I go to bed and on an empty stomach (3 hours after dinner). I’ve heard of other patients who have taken Gilotrif/Afatnib® in the morning and have not been able to manage the side effects.
-I don’t tolerate eggs or regular milk, ice cream or most dairy but my wife and my daughters are always “hunting” for lactose free or dairy free products, and found that there are always a good variety of “lactose free” products at any Organic food store in your country or in Canada at CO-OP® or at Super-Store®. It always helps to take some Lactaid® (Lactose Intolerant Treatment) before anything that might have lactose, just as a precaution.
–Oreo® cookies, Cinnamon Toast Crunch® or BelSoy® Puddings are my dessert often, since these products doesn’t contain lactose. By the way with respect to cheeses, my wife found that there are some of them with minimum amounts of lactose such as: Mozzarella, Parmesan and most of the aged hard cheeses.
– Butter doesn’t have lactose, unlike most dairy products, butter contains mostly fat and very little protein and carbs so feel free to indulge!
Some days the side effects might not depend on what I ate that made me have a reaction, it might just be a reaction, but do keep in mind smaller meals throughout the day rather than larger meals makes it better.
No hair loss as this is a different treatment to traditional chemotherapy, only change is that my hair used to be curly before my treatment and it has now gone straight, I heard other people were the opposite.
Praying together as a Family
And last but not the least it’s always a relaxing and encouraging moment when I go to church every Sunday or when I pray on a daily basis with my wife and daughters, it is a very short time but very sensible and significant to me to pray and hear the Lord’s prayer from one of them. Praying as a family is a wonderful, rewarding activity
These are just a few suggestions on what has seemed to work for me. I hope some of these points are of insight for you as you journey through your own path.
All the Calgary doctors and people who have been directly involved with my diagnosis and treatments have been amazing and I thank Alberta Health -Canada and every one of them for their kindness and professionalism.
By the way I’m feeling strong & very well, no symptoms and still working hard as a Calgary Real Estate associate at: FernandoAramburu.com and keeping updated my small contribution to the Latin American community in Canada, the free Calgary Latin Directory: HolaCalgary.com
“Enjoy life with your wife whom you love all the days of your fleeting life which He has given to you under the sun; for this is your reward in life and in your toil in which you have laboured under the sun”
Ecclesiastes 9:9 New American Standard Bible
-Note*: Afatinib (trade name Gilotrif in the US and Giotrif in Europe is a drug approved in United States, Canada, Europe, Taiwan, Mexico, Chile and Japan as well as other countries for the first-line treatment of patients with distinct types of metastatic (EGFR mutation positive) Afatinib is not a chemotherapy drug but one of what are termed “targeted therapies”.
Jan 26th, 2017
Cancer Statistics for 2016: Canadian Cancer Society’s Advisory Committee on Cancer Statistics. Canadian Cancer Statistics 2016. Toronto, ON: Canadian Cancer Society; 2016. Link
This site is not intended to provide and does not constitute medical, legal, or other professional advice.