Wednesday, March 30, 2016

New Hair and Immunotherapy #2

Gohan has a perfect round head shape

Spring is here! Flowers are germinating, birds are making nests, and Gohan's hair is forming new 'shoots'!  Soft brown baby hair are growing steadily covering his head. Praise God for restoring his hair follicle.  We pray that restoration of his healthy cells and body functions is happening everywhere in his body.

Immunotherapy #2

Gohan received his immunotherapy #2 today. We felt a bit more relaxed because there were only one bag of drug to infuse, no steroid and no anti-vomiting drugs. We will get new scan every four treatments.  Dr. Dormady and Katie told us that Gohan is receiving Nivolumab (Opdivo) as a maintenance, therefore, like most of his NSCLC patients, we may see pseudo-growth of tumors in the first scan, but it will stabilize on the second scan.  What is most encouraging is that the drug will go through the blood brain barrier to attack the cancer cells in the brain! Maybe that is why Gohan is feeling less and less numbness on his fingers.

Dr. D highly encouraged us to go travel while on immunotherapy because Gohan will feel more energy.  Hopefully, Gohan can hike again soon.  For the past couple of months, he has been feeling short of breath when walking uphills.  So instead of going to Rancho San Antonio, we have been walking around the neighborhood. Thanks to Riley, we have met all of the dogs from our block. Now with Dr. D's blessings, it is time to plan for a family vacation!


Wednesday, March 23, 2016

First immunotherapy and Asia trip


First immunotherapy Opdivo infusion

On the day we arrived in Asia, our insurance company approved the immunotherapy treatment for Gohan. Apparently my call made a difference! I am a fierce advocate when it comes to treatment for my husband whom I love dearly.  It is comforting to know that when we returned to the US, Gohan would be able to receive the infusion.

Having skipped a treatment session, Gohan felt less fatigued and was able to enjoy our 10-day trip in Taipei, HsingChu and Shanghai. Our schedule was tight, but thankfully we were able to see family and friends in between Gohan's business meetings. Everyone was so kind to come see us on a short notice and every gathering was fun and joyful.  We savor the hometown foods that we miss, and with loving company at every meal B/L/D, Gohan's appetite significantly increased so he was able to gain more weight. While we were in HsingChu city for his work, we stayed at his 'second home', the Ambassador Hotel, where he had stayed for work 120 times, averaging 1 trip per month, over the course of nine years before he was diagnosed of cancer.  The hotel staff, from the general manager to the cleaning maid, know him like an old friend.

                                                          Family and friends we saw in Taiwan and Shanghai

With a mission in mind, at each gathering, Gohan shared the life lessons that he learned over the last two years. Everyone was touched and inspired by him. The highlight of our trip was an interview with NEEDs radio, an Internet radio station which has 14 million listeners across China and Taiwan. Being able to share our journey and God's greatness with so many people made the trip even more meaningful. We want to thank my sister Carol for connecting us with the station.

Radio interview and work in HsingChu 

Our visit to Shanghai brought back memories from when Gohan worked and lived there in 2004 and 2005. It was the darkest time of Gohan's career. The long hours and high stress at the startup company weighed on his shoulders as he walked back to his single occupancy apartment alone every night. When the company's funding started to deplete, company politics intensified and work became a white collar gladiator fight. The substandard living condition, the cultural shock and being way from his family made life extremely challenging for him. During the two years, he developed Hemifacial spasm disease that remains even today, and plagues him during waking hours. He came back with his liver virus flared up and with 'three highs' - 'high blood pressure, cholesterol and triglycerides'. He also had shingles, a sign of compromised immune system. The worst of all, the experience left him with a wounded soul. Looking back, as a health care provider suggested, his cancer might have started then.

10 years have passed, the Shanghai cityscape has doubled in size, and it has become one of the 10 riches cities in the world.  Like the city, we have also grown, but in a different way. We see life from a different perspective and our spirit is stronger than ever. We have thrown away much baggage, and we have learned forgiveness. Hence, when we returned to China this time, we did not feel bitterness from painful memories. We saw white yulan, Shanghai city flowers, blooming among the skyscrapers, and a few birds flying across the smog, calling to each other. There was a group of elderly dancing in a small park, and Lala, my sister Monica's Labrador Retriever, played contentedly in their high-rise flat. We felt at peace.

A fresh look at Shanghai

On March 16, 3 days after we returned from Asia, Gohan received his first immunotherapy. The infusion and prep work takes 2 hours, half of the time chemotherapy takes. Before the infusion started, he was tested for thyroid functions to establish a baseline. We learned that immunotherapy attacks the thyroid in some patients, therefore, his thyroid functions needs to be monitored every other infusion. Less side effects than chemotherapy are expected, so we should have a better quality of life, which makes us hopeful and excited. We have so much we want to do and so many people we want to re-connect with. Don't be surprised if you see us in a place that you are least likely to expect us. We will live life fully.

Gohan & Jacqueline




Wednesday, March 2, 2016

Good scan report, immunotherapy delayed

Enjoying cherry blossom on his daily walk with Riley

We went to see Dr. Dormady today, both brain MRI and lung scan show stable disease.  As we learned through this journey, stable is good news! Dr. Dormady also confirmed what we learned from his staff yesterday that our insurance company United Healthcare is still reviewing our preauthorization for using the Opdivo, therefore we can't get the injection today.  It is a bummer. Dr. Dormady is very annoyed by the insurance companies' tactics of delaying coverage for cancer patients.  He said that Opdivo is $35000 per injection, more expensive than chemo, hence, the insurance company has been lagging in approving the drugs with all sorts of excuses.  He has requested for a peer to peer review with the overseeing doctor at the United Healthcare today, and he is confident with more push from both him and us, United will approve our case before we return from Asia.  I asked if we should do chemo instead today, he replied no need.  He assured us that Gohan's disease will not change within two weeks and encouraged us to enjoy the break from treatment.  


This is something we didn't expect, but come to think of it, this break comes timely as we are traveling to Asia for work and also to see family and friends. 


"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:9

Thanks to be God, we will surely enjoy our trip and the 2 weeks break without treatment.  

Immunotherapy - check point pathway

The drug Opdivo that Gohan will receive for cancer treatment is based on immune check point pathway PD-1 and PD-L1 mechanism.  Here are twos videos that describe the mechanism in an easy to understand way.