Friday, February 16, 2018

A letter to a lung cancer friend

Dear Mark,

Thanks for your call. Sorry I was not able to talk to you for long yesterday. Although we have never met, it still grieves me that you were diagnosed of advanced stage lung cancer, because I know the journey ahead will be hard. I still remembered the feelings of anxiety and fear for the unknowns especially during the first few months. The non-stop treatment that follows was grueling. However, after four years of treatment**, my husband Gohan who was diagnosed of stage 4 NSCLC in Jan. 2014, survives, living a good quality of life. He has been able to travel overseas, continued to work for 3 years, is actively engaged in our community and social lives, mending and rebuilding relationship, seeing our family grow and making his dreams come true. There are also several advanced staged NSCLC patients in the Bay Area that I know who are cancer free after treatment. You can be one of them! Therefore, don't be despaired because we live in a time with advanced medicine, and there are many new drugs in the pipeline. Unlike in the past when cancer is a death sentence, now it is treated as a chronic disease, just like diabetes which once was a deadly disease. 

Prayers move mountains
Many new patients like you asked me what works, I would say the first thing is prayers. Both my husband and I know that he would not be alive if there has not been prayer support from our family and friends. Our spirit were uplifted by prayers and worship when we walked through the valley of death, many times. Prayers also open doors to new opportunities, and clear our mind to see God's purpose and will. Prayers prompt our angels on earth and in heaven to take actions to help us. 

No sliver bullets
I once attended a presentation by Dr. David Gandara, a renowned thoracic oncologist at UC Davis. He asked the audience how many kinds of lung cancer there are. The audience there were well versed in the types of lung cancer, replied '4', '7', '8', etc.  With a serious smile, Dr. Gandara said the answer is 'as many as there are the patients in this room'. He explained every patient's genes composition are different, the gene mutations are different, so every lung cancer is different. Therefore, everyone responds to treatment differently. What works for one, may not work for another. My husband's case can testify to that. 

The standard first line treatment for lung cancer patients with EGFR mutation, what Gohan has, is Tarceva. However, our first oncologist at El Camino Hospital strongly advised that we use a cocktail of chemotherapy instead. Why? Because Dr. Dormady has a 40+ years-old stage 4 lung cancer patient with bone metastasis, who is also an Asian and a never-smoker like my husband, has had great success with the chemotherapy. The patient's tumor shrank by 80% with the chemo, afterwards he could have surgery and radiation to remove the remaining tumor. The patient is now in his 7th year of NED (No Evidence Detected)! A great success story indeed. So we followed Dr. Dormady's hopeful advice and received the same chemotherapy. Unfortunately, the chemotherapy only works marginally on Gohan's cancer. We had to stop it and changed to Tarceva. Two years later, in September 2016, after many more courses of different treatments, Gohan was given a few weeks to live because his cancer has metastasized to leptomeningeal carcinomatosis which is a rare metastasis, and little can be done to treat it. However, after I transferred his care to Stanford (at that time, he was not able to make medical decision for himself), and subsequently received a new drug, he miraculously survived and recovered. So as Dr. Gandara indicated there is no fixed formula or 'best' treatment for lung cancer. The best treatment is a treatment that is customized for the patient's gene mutations and physical condition, so finding a good thoracic oncologist who stays on top of the newest medical breakthrough to provide care for you will be the first step to recovery. I strongly recommend Dr. Heather Wakelee at Stanford hospital if you live in the Bay Area. At the same time, keep in mind that because human bodies are so complex, even the best oncologist is half guessing what may work for you. 

Alternative therapy
You will hear about many alternative medicines, many of which claimed success in beating cancer. However, since none of them have clinical studies, and most of the success are anecdotal, we don't know the odds of its effectiveness. For advanced stage cancer, I would not abandon conventional medicine and go for the alternative medicine because the stake is too high. I would also check with the oncologist before taking any alternative medicines. I have accompanied my husband to see two Chinese doctors, both of them suggest only using acupuncture to help with sleeping and relieves discomfort from chemo, not for cancer treatment. 

In my prior post in 10/8/2015, I have listed the well known diet for alternative therapy. 
http://gohanrecovery.blogspot.com/2015/10/alternative-therapies.html

Please note that we have not tried any of these diet because the diets may reduce my husband's weight and strength which is not something we want to risk taking during the treatment. I went to grad school for food science, so I don't trust any diet plan unless there is science evidence supporting it. There are patients online claiming the effectiveness of any diets, however only a few of them are patients with advanced stage cancer. You can try if you are daring, but I advise only if you will not lose more than 10% of your weight. 

Also, you can find information and professional evaluation about the effectiveness and usage of many supplements and alternative therapies on the American Cancer Society website. All you need to do is search the keyword on the website.

Strong community
Besides medical treatment, what works for sure is having a strong community to support you. The community can be your family and friends, your faith community and patients community. Do not fight this cancer alone. Your chance of survival increases significantly if you have a strong community. It is never too late to build one. My husband and I are fortunate to have a community that sustain us with love and kind deeds which are critical to his recovery. If you don't have close family who can provide care for you on a daily basis, I suggest that you hire a private caregiver. 

In the following I have listed four patient communities which I have participated in the past. I highly recommend that you reach out to them. You will find patients who may have similar background and conditions as yours, whose treatment and journey can be served as your references. However, it will be helpful if you find out your cancer molecular profiling such as EGFR, ALK, ROS1, or KRAS, etc, so you can communicate with other patients on the same page. 

Inspire.com - an online patient community where you can ask questions, share your story, and hear other patients' journeys. I have found many tips on treatment and managing side effects on this forum

CancerGrace.org - a patient online community with doctors answer questions. If you want the information about the newest drug in layman term, check this forum. The founder Dr. West is an oncologist who dedicates his career and life in helping lung cancer patients recover. 

Stanford lung cancer support group
Meet first Wednesday of every month at Stanford cancer center - open to the public, you don't need to be seen at Stanford hospital. A new topic is discussed every month and an expert in the topic area will give a presentation and answer questions. A great place to ask the expert. The group is small, no more than 15 people. A great place to meet patients in person, but most patients don't go consistently, so it is unlikely you can build a long term relationship here. 

Lung Cancer Living Room by Bonnie Addario Lung Cancer Foundation
Meet third Tuesday of every month from 5:30 pm to 7:30 pm at San Carlos and also through the livestreaming - Every month a professional in the lung cancer treatment and research will give a presentation and answer questions. The group is about 30 people. Dinner provided. Over half of the attendees are veterans patients who attend the meeting regularly. The community provides hope and support, however, one also becomes keenly aware of the devastation of living with lung cancer because every month there will be announcement of the names of the people who no longer can attend the meeting because they have passed away. 
https://stanfordhealthcare.org/events/lung-cancer-support-group.html

New Hope Chinese Cancer Care Foundation
A great support community for Chinese
http://www.newhopecancer.org/

A new lifestyle

To give us the best chance in beating cancer, we need to make changes in how we live our lives. I am sure you can identify at least one area that you want to make changes, be it in diet, exercise, stress management, or emotion management. I encourage you to make changes as soon as you can. If you don't know how, I suggest that you read "Anticancer : A New way of Life" by David Servan-Schreiber. 

A joyful heart

A joyful heart is good medicine, the following article explains why
https://imcwc.com/html5-blank/a-joyful-heart-is-good-medicine/

A new meaning to life
Last but not least, I hope you will find time to explore the spiritual aspects of your recovery. Whenever we have a life changing event or disease like this, we examine our lives and find new meanings. If you don't know God, I encourage you seek Him. He has all the answers for you. Along the journey, my husband has transformed to a new man. He used to be wary, stressed and not happy. Now he has joy and peace in his heart. I hope you will find the same too. 

I hope this letter gives you some guidelines in starting this life-transforming journey. If you have any questions, please feel free to contact me any time. 


May God's strength and wisdom be with you. 

May He heal you and restore you.

Sincerely,
Jacqueline

**My husband has gone through one year of targeted therapy Tarceva, 20 rounds of chemotherapy, 12 rounds of immunotherapies, 22 sessions of whole brain radiation, humerus bone radiation, 5 sessions of spinal radiation, stroke treatment, and now on 3rd generation targeted therapy Tagrisso.

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