Climbing up

The fourth chemo seems to hit harder and faster with various side effects including palpitation, indigestion, extreme fatique, headache, mouth sores, nosebleed, and feeling depressed.  However, thanks to God, GwoHann passed the naider in 7 days, with most of the side effects subsided.  It is a miracle that he recovered faster than the previous cycle.  We attribute it to all the prayers and support from our friends and family.  In less than two weeks, smile has returned to his face and he has resumed most of the activities including hiking 50 minutes a day.  I could hardly catch up with him!

Most important, he coughs less and can breath better!

We will get a PET scan next Monday (the no-carbohydrate diet the day before will be another trial to the will power), and see the oncologist on the following day to discuss the next treatment course. 

Please continue to pray that the treatment is effective and that his immune system is stronger than before, that all the cancer cells will be completely wiped out from his body in no time!  

- Jacqueline

Mr. Bean comes to rescue

One sure way to stir up an appetite is a good laugh.  To GwoHann, there is no one better than Mr. Bean who can deliver a heartfelt laughter.  As Mr. Bean solves the various problems by unusual solution and causing disturbance in the process, GwoHann joyfully eats his dinner bite by bite, frequently bursting out laughter.

Rowan Atkinson probably didn't expect that he could rescue an appetite dampened by the chemo when he created the first episode in 1990.  Therefore, never underestimate the impacts your creation and work can bring.  It may one day save a person's day or life.

- Jacqueline

Fourth Chemo

Surrounded by three generations of family members and friends, GwoHann is going strong for the 4th chemo, hopefully, the last one.

Being such an easy to talk to patient, every nurse calls him by name, comes to say hi and gives him hugs.  It was like a chemo party, a 6-hour one.

I found that every cancer care nurse there has a special talent.  They could crack a joke to make you laugh while poking a needle to you.  By the time your eyes winces from the quick sharp pain, your smile was still lingering on your face.  Imagine the look.

Speaking of needles, GwoHann got two big bruises (hematoma) this time when two nurses each tried to find an accessible vein but failed. They said that this kind of things happen after the patient receives multiple chemos, the veins 'runs' when the IV needle is put in.  However, when Kathy, the nurse who was known for her superb skills in finding veins, was called in to help, she got it in the first time, as always. Skills or running veins, we don't know.  One thing we know for sure is that after GwoHann and I prayed for a smooth IV injection for the following day's hydration treatment, it went well.  We decided that we will pray every time before getting poked.

- Jacqueline

Welcome to our blogs

Dear Family and Friends,

THANK YOU to all of you for having been so kind to us, expressing concerns about how we are doing, and inquiring about how you can help.  We hope that by sharing this blog with you will help answer some of your questions.  Please check the past postings if you are interested in learning about our journey. Thank you for reading.

While Jacqueline may have a bit hard time talking about the disease repeatedly, GwoHann is always looking for a good listener to discuss about his latest treatment and status.  Please feel free to email or call him.

We are also grateful for your support both in prayers and in deeds. We hope the periodic updates will help give you a direction in what to pray for us, and perhaps lending us a hand.

There is also a link to the meal support calendar which you can use to sign up.  Thank you for your generosity of your love and time.

We are fighting an extremely difficult battle, but with your love and support, we shall claim the victory!

In gratitude,
Gwohann and Jacqueline

Enjoy the sunshine before the next round

Thanks to so many friends and family's support and prayers, Dad tolerates the 3rd cycle better than the 2nd.  We also know how to prevent and manage the side effects better when they occur.

We didn't go out to the public area for 16 days, hence, Dad didn't get infected this time.  Also, Dad took breaks and naps as much as he could to cope with the fatigue, and was able to emerge from the chemo nadier after two weeks.  This Sunday, Dad hiked with the cell group members at the Rancho San Antonio, and I went watched a movie with friends.  Later we enjoyed a Thai dinner with old friends, the Hsia and the Chu families.

Life is still beautiful.

The fourth chemo starts on Tuesday, April 8, at 9 am.

- Jacqueline

The support group and clinical trial at Stanford

There was a line at the valet parking, I had to wait, because there was no garage nearby. The 20 or so valets were moving as fast as they could.  The modern building was nice looking, with travertines wall and sleek tall windows.  People were walking in and out constantly.  It felt like going to Nordstrom during the holidays, except no one was carrying shopping bags and the air was heavy.  It was the Stanford Cancer Center.

The social worker who led the lung cancer support group was in her late 20s.  Most everyone else in the room including the spouses were in their 60s.  She tried hard to connect with us by small talks. However, no one was talking.  I decided to ask the group questions (you know me). Coincidentally the five patients present were all females. Three people were on Tarceva without the chemo, one of whom was celebrating her third year under a clinical trial.  She and her husband were clearly happy about the result. Another lady had red rashes on her face, obviously from Tarceva. One fashionable Asian lady named Lynn told us what she has been through. She had a full course of 6 chemos, 2 partial brain radiations, Tarceva, and now going for a full brain radiation treatment. She said it had been a tough journey but she is glad that she has passed three years. What a fighter!  I have TREMENDOUS respects for every cancer patient and survivor.

Lynn said that Stanford probably takes 100 patients each day for chemo infusion, therefore it is typically a 2 hours wait before the patient can get sit on the infusion station. There is a 45 minutes wait for drawing blood after checking in.  2 hours wait to see the doctors unless you get the first appointment of the day.  From the conversation, I realized that we had made the right decision in getting the treatment at the El Camino Hospital, because we know how Dad hates to wait and that personable service is important to him. 

The speaker of the day walked in, and it was Dr. Wakelee! I felt lucky because it was my first time attending and I got one of the best thoracic oncologists in the world to answer my questions. She spoke about her team, how they provide medical care, and what their research focuses are. I admire that she is passionate in finding a cure and increasing the lifespan of lung cancer patients. She encouraged us that there are drugs in the pipeline waiting for clinical trials and FDA approval.  Her reputation in the field and the amount of work that she does seem disproportionate to her 5 ft petite build and her gentle voice.

To qualify for her clinical study of Tarceva and Immune therapy combination treatment, the patient has to stop taking any treatment and has a biopsy done.  The pathologists and scientists will stain and look at the biopsy samples to determine if the patient is qualified. The process takes about a month, and during which time, the patient can not take any treatment.  Thus far, she only has 4 patients, out of the many patients who want to get on the trial, actually qualified for the trial.  My take is that the wait could be nerve racking because the tumor may grow, and worse, the patient may not qualify after the month long wait.  Even worse, the therapy may not work for the patient.  

I have read online about one woman who couldn't take Tarceva, but took the immunotherapy trial and was very fortunate to have it worked wonder for her. She is in her 7th year. That is why it got me interested in immunotherapy.  However, knowing that Tarceva will work for Dad and with the risk of an unproven trial, I am not sure if we want to take this route.  Have to think about this more.  

I followed Dr. Wakelee after she exited the room to ask her a few more questions about Dad. She was very kind and patient in answering my questions.  At the end, she gave me a warm smile and told me "hang in there!" I don't know why, but my eyes became teary.  

Ama is here!

Since Ama arrived on 3/31, I have been able to feel more relaxed.  It felt like a burden was partially lifted from my shoulder.

At age 82, she walks a bit slower than before.  Nonetheless, she looks fantastic and is still as industrious as before.  She is always one step ahead of me.  Within 3 days of her arrival, she did the pile of laundry, mopped the entire hardwood floor, gave Riley a bath and cleaned up my fridge.  She showed us the 'swing arms' exercise that is very popular in Taiwan and China to strengthen the immune system.  Most important, she gave us the mental support that we most needed.  She told us not to be despair, Dad will get better.

I am so grateful that I have a wonderful mom.  She has always been the quiet and peaceful force that strengthens my weaknesses, and comfort my heartaches.

- Jacqueline

Second opinion from Stanford

We saw Dr. Heather Wakelee at Stanford on March 31 for second opinion.  We were impressed by her knowledge and experience.  She has been specializing in thoracic oncology for 10 years at Stanford, and now is the director of the group.  One can tell that she is a scientist and her answers are based on published clinical studies.  The consultation lasted for 1 hour 45 minutes including the time interfacing with her interns.

Her recommendations and comments:

1. Four cycle chemo is a standard in treating lung cancer, but no one knows how effective it is versus 2 or 3 cycles, because there has never been clinical studies done on this. Hence,the decision is usually based on how the disease respond to the chemo after 2 cycles and how much the patient can tolerate the chemo.  However, at the same time, the effectiveness of the first 2 cycles does not predict the effectiveness of the next two.
2. From the PET scan, the tumors were reduced by about x% after two cycles, but it is difficult to judge the effects on the small dots in both lungs.  A CT scan can tell better.  
3. Cisplatin is toxic and will have late effects on the nerves (which means long term side effects that develop later).  In Dad's case, she said we can go without the Cisplatin in the fourth cycle if we are concerned.
4. The standard treatment for EGFR mutation like Dad has is Tarceva first.  Treatment starting with chemo is usually for patients who have no EGFR mutations.  However, the overall survival is the same for either route.  No one can say one is better than the other.  
5. There is no clinical study shows that starting with chemo may prolong the effectiveness of Tarceva.
6. Most patients can tolerate Tarceva, but some patients found it as bad as the chemo.  The most common side effect is facial rashes.
7. Since we have already taken the chemo first route, we should try, after the fourth cycle, to continue the chemo without the Cisplatin, i.e. Alimta and Avastin for as long as we can before switching to Tarceva.  The reasons are
   - Try to get the most out of the chemo and save Tarceva for later
   - Insurance most likely will not pay for Avastin after we stop, because Avastin is expensive, $15,000 per infusion.  
8. Tarceva does not work forever, but there will be other steps that we can take after Tarceva.  
9. Her research focus is on how to make Tarceva works longer on the patients.  
10. One of the clinical trials she is conducting is Tarceva plus immune therapy.  She asked us to consider it before taking Tarceva.  The clinical trial is only open to patients who have not taken Tarceva.  If Dad starts taking Tarceva, he will not be eligible.  (will write about her clinical trial in another blog)
11. We should do CT scan instead of PET scan for the next few check points because PET scan gives more radiation to the body.  Dad already had two in one month.  CT scan every 2 to 3 months is sufficient.  Also, CT scan is lower risk to the health and will provide a better images for measuring and determining if the tumors have reduced.  Only do PET scan when there is suspicion that the tumors may have spread.
12. LingZi and JinShen will not interfere with the chemo based on the research done in Hong Kong

Stanford will send a note to Dr. Dormady about her recommendation.  We will see what Dr. Dormady has to say.