December, 2015

Genomic Test For Future Options

In August when I visited Dr. Slamon, who invented Herceptin at UCLA, one of his recommendations was a genomic test to find out future options.
Cancer damages DNA, which makes up genes. The genomic test is to find effective drugs or regimens for damaged individual DNA. In other words, it will find the personal regimens. Recently I have heard about such a test more and more.

The test I was recommended by Dr. Slamon was called Foundation One operated by Foundation Medicine in MA. According to the site, the successful rate of the test is 85%. In the rest, the test may not be able to find any matching drugs, or even if it finds some clinical drugs as suitable, you may not be qualified for the trial. Needless to say, without perfect drugs, which kill cancer cells 100%, the treatment is limited anyway even with the test. Yet, at least we can avoid wasting time and money for ineffective drugs, as well as nasty meaningless side-effects.
For me, the main purpose is to find out if Afinitor, the drug for Hormone + breast cancer, is effective or not though mine is not Hormone + but HER2+. The testing cost $5000-7000, but without insurance, it is adjustable depending on the income according to the site. Since my Kaiser insurance doesn’t cover the cost and I was told to ship the specimen by myself, I am asking the instruction of shipping.
Today I had a CT scan to evaluate the latest regimen, Abraxane and Herceptin. Perhaps it will take a week to receive the result, but if cancer is growing, I have to change the regimen again, so I should hurry up the testing.
Abraxane is the same chemical as Taxol, which lost the effectiveness already on me. My chance is slim but I pray for a good result!

Opening of Christmas

My heart was heavy and I was depressed.
Cancer may have been into the liver already.
The radiation I’ve received from CTs and the therapy in the past 6 years may affect on me soon.
George may have a stroke or a heart attack tomorrow.
If I die, he will find a new girl/woman and move on without me, and ………
Once I got down, I was falling deeper and deeper.
Looking at me who was like an empty gas balloon, George invited me for a movie, “The Letters”, saying that a book “ Mother Teresa: Come Be My Light: The Private Writing of the Saint of Calcutta” we have read once was the original of the movie.

I was reluctant even going out, but because of it, I thought I should go out. I pushed myself and went to the movie with George.

Perhaps the movie was not the four stars, but it changed my mood 180 degrees.

Mother Teresa, who gave half of her life to the poorest of the poor in Calcutta, India, is a person I highly respect. While she was serving the poorest of the poor, she never took the praises and admiration for herself, but kept giving glory to God saying that she was just a pencil of Him though she had been struggling with loneliness, the silence and emptiness of not being able to connect with God.

The movie depicted that despite of the afflictions of disagreements of her supervisor and the parents of her students who wanted to follow her, and criticism or persecution from Hindus, whom she was helping, she stayed humble, obedient, and kept loving them.

At the climax, as she received the Nobel Peace Award, she quoted Saint Francis’ Prayer, “ Make Me An Instrument of Your Peace”.

“O Divine Master, grant that I may not so much seek to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life.”

The prayer and her utter unselfishness, loving posture spoke to me, who was obsessed about myself, having self-petty.

The anxiety, sadness, jealousy, greed, and anger, which had depressed me, were all cleansed, and a new hope, appreciation, strength, and love were installed. I was lifted up.

The next day, I was invited for a Christmas Carol performance by CSU Long Beach Choir. The beautiful powerful Christmas carols made me think about God, who was so merciful, faithful, and loving to me, and I was overwhelmed.Untitled

This year was a tough year, but He is giving me a glorious, holy Christmas at the end, again.
How great You are! I am blessed and thankful!

(If you’d like to read George’s perspective of the movie, please go to his blog.)

Being Playful

This was the 4th time to have lost hair. If I have to wear a wig, I should have fun doing something I won’t do normally.
Finding the long curly wig like a Barbie doll in the internet, I ordered it, and this is what I got.
WigWig back

 

 

 

 

 

It was only $14, so it’s like a Halloween wig. Probably it won’t last long, but then I will get another fun wig. Changing an image totally, George keeps saying, “who is the person?” It’s all fun!

Wig #1

This is the first wig.

Wig #2

The 2nd wig

CT Result: Cancer Growing Continually

I knew my chance to shrink cancer with Abraxane was slim, but the prediction and hope are not the same, and I always wait for a test result with fear and  hope for a miracle. However, the CT result I finally received could not beat the prediction. The tumors in the lungs and mediastinal lymph nodes were growing even with a new 9mm lesion/metastasis. It was fortunate that there was no description of metastasis in the liver in spite of the recent elevation of liver enzymes.

I will discuss the next step with my new oncologist tomorrow, but now my hope is mostly the genomic test I sent the specimen to the lab, Foundation Medical in MA last week. The result of the test should be back within two weeks.

After receiving the bad result of the CT as well as the infusion, I chose to help a Japanese family, whose daughter was carried to ER the night before, at a different hospital for an interpretation. If my heart is heavy, I am reluctant to go and serve, but I always find myself at a better place after then.

At night at the Bible study, several friends showed up with their wigs on knowing I would come also with the new crazy long hair wig. So I gave one wig to George to wear. Geo with a wig There were lots of laughter as well as prayers for me. Though the CT result was disappointing, I thanked God for the laughter and the good friends.

“This Is Not So Bad”

Looking at the CT report, the new oncologist told me that actually the result was not so bad despite of the progression. Especially if she considers about the 6 week off treatment, cancer could have grown during that period, and Abraxane might have been suppressing cancer not to grow more.
“ I don’t think there is any reason to stop Abraxane,” saying so, she suggested to continue Abraxane at least until the genomic test result comes back.

She also said that up till now as the tumors were only a few millimeters, perhaps I didn’t need to change the regimens so quickly, which resulted in me being left only a few options.

As I told her another concern of the high dose of the radiation I have exposed to by many CTs I have taken every 2-3 months, she said that it would be fine to expand the intervals to 4 months or even 6 months unless there are some signs or symptoms to concern because in the big picture, my cancer grows still slowly.
She is even hopeful for my options: She thinks there should be several clinical trials I can try.
What she said was all so encouraging that it was like my best Christmas gift this year.

Now I feel much better. GOD IS GOOD ALL THE TIME!

Strength Was Restored

Even though a fact is the same, depending on the perspective, things look differently. If I think I have only a half-cup of water, I get worried and down, but if I think I have still a half-cup of water, I can stay calm.

Though the fact that the cancer has been growing since the beginning of this year hasn’t changed, it is so strange that the world looks brighter after I heard the encouragement from the oncologist.

If someone says, “ I’m already 51,”I, who am 61, can say to her, “Still 51? You are so young!”

If someone says, “ I don’t know how many days I have left,” I can say, “ you have still today.”

The person has been giving himself for organ transplant patients for several decades and he is determined to keep giving until his last day.

Feeling the strength God restored in me and knowing that He wants me to be his instrument, I also determined to share the encouragements and the promise Jesus taught us with him until the end.

“ I have fought the good fight, I have finished the race, and I have remained faithful. And now the prize awaits me—the crown of righteousness, which the Lord, the righteous Judge, will give me on the day of his return.”–Second Timothy4:7-8

God Who Appears In Desperation

When death hits in spite of many prayers, it is understandable if people say, “ See, there is no God.” In fact we experience such unreasonableness quite often. Yet, during my international organ transplant ministry time when I saw Japanese families, who came to the US to seek organ transplantations, but lost their loved ones, had tears being overwhelmed by the kindness they received as strangers in the foreign country, I thought I witnessed God, who is called “Immanuel”(God is with us), and became to believe God. God in the Bible appears in such desperation in very different way from what we expect.

The following story is from a Christian site, GodUpdates.

Chen was just a 5 year-old boy when he was diagnosed with brain cancer. Sadly, just months later his mother, Zhou was diagnosed with kidney disease.

Chan's story #1

For two years, the pair battled their conditions side by side. Eventually, the tumor caused Chen to lose his sight and he became paralyzed. At the same time, his mother was told that she would never live a normal life again because of her kidney condition.

Chan #2

Chen’s doctors knew that this little boy’s time on earth was getting very short. They were also sure that his kidney would be a perfect match for his mother who desperately needed one. But his mother Zhou refused it.

Chan #3

Sweet Chen overheard his mother rejecting the idea, so when he saw her he begged and pleased with her to take his kidney.

Chan #4

As Chen’s tumor grew and he became eve more ill, he asked his mother to just let him go. Chen had the hope that if he died, he could help save his mother life.

Chan #5

With tears in her eyes and with a heavy heart, Zhou finally agreed. Her one consolation was knowing that a part of her son would live with her for the rest of her life.

Chan #6

Chen peacefully passed away on April 2nd, and this precious child’s kidney was given to his mother to save her life.

Chan #7

Chen’s sacrifice not only saved the life of his mother, but he saved the lives of two others as he donated other organs.

Chan #8

Matthew 10:39 teaches us, “He that findeth his life shall lose it; and he that lose his life for my sake shall find it.”

————(end of the copy)

The time on this world is a preparation to enter God’s Kingdom, where we live eternally. If so, Chan, who wanted to save his mother more than himself, must be there receiving a new body and the eternal life.

It is our choice to think;
Chan was not able to survive. Mom was left alone. How merciless it was!
The mother took a kidney from Chan, who had suffered enough. What a horrible mother she is!
Or,
God equipped Chan as His instrument. He became a grain of wheat, which saved three lives. He didn’t die in vain.

It depends on what we believe or which perspective we choose.

For me, who believes Jesus as Son of God, I see a stream of light in this seemingly gloomy depressing story. It’s all because He came to the earth to save whoever believes in Him.

Merry Christmas!

Santa Went To Town Again

“Ho, Ho, Ho, Merry Christmas!”
This year again Micah’s Santa went out to the town carrying the white potato sack, which was filled with gifts.
How long has he been a Santa? At least more than 10 years, I think. He is now in his mid 50s with gray hair, but he still looks forward to this day so bad that he starts bugging George calling him, once Halloween is over.
“When will we do it?”
“Micah, Christmas is after Thanksgiving.”
Although George answers, soon after, he calls and asks the same question, again.
He has such a childlike innocent heart. at home
Usually I stay at home, but this year I asked George to take me together.
The first stop was a house of an old couple; a husband has a bad lungs and eye, and the wife has a bad heart. I used to give her rides for Sunday services, but as her health declined, she stopped going to the church. Our conversation also declined.W: Bell
For Micah, this is the first time to meet them. It was around 6pm and the outside was already dark. Approaching the house, which looked dark, we hoped someone was still there, and Yes! I saw the light at the kitchen and the husband was there.
Micah yelled.   George and I also yelled.

“Ho, Ho, Ho, Merry Christmas!”
Recognizing us, the husband called his wife, who was lying on the couch watching TV.
“Oh my! What a surprise! Please come in!”
They offered us to sit down, but the Santa is busy tonight. So leaving the gift, we headed to the next stop, a 94 year old widow’s apartment.
Last year she thought Micah Santa was a burglar or something and got scared. So this year, just in case, I knocked on the door. After a while, she finally answered, “I’m coming.” The door was opened, and there was a small lady with a big surprise.
“Oh! Santa Clouse!”
“I love Santa!”W: Betty
She put her thin arms around the Santa’s big berry, and gave a big hug.

She also wanted us to sit down for a while, but the Santa had to go.

The third stop was a family, who lost the mother/wife with breast cancer several years ago, and then the last stop was Micah’s group home. As his white sack became empty, we went to have his favorite hamburger.
On the way home back, Micah said many times, “George, thank you. Kathy, thank you.”
Seeing the people excited joyously so much, now I understand why Micah can’t wait for the day he becomes Santa. It doesn’t matter how old he is, no wonder he can’t stop it. Micah, who used to know only the joy to receive, now discovered the much bigger joy to give. It was a fruit produced by George, who wanted to teach Micah the real meaning of Christmas and made it as a tradition.
I am so glad to have been a witness!

Micha

Neutrophils (White Blood Cell) Skyrockets

Since Chemo Abraxane knocks down Neutrophil counts, in order to boost up the counts, taking a shot of Neupogen for three days after the infusion has been my new routine. Though I had to cancel the infusion at the beginning of the regimen, Neupogen kept me on the truck keeping the counts in the standard range until last week.

The blood test last week showed Neutrophil counts increased 10 times, from 4.9 (12/14) to 41.6(12/20). While the instruction is to start the shot next day of the infusion and continue for three days, the week before the last week, I delayed the shot one day, and finished it the day before the next blood test, which was one day earlier than the originally scheduled. Maybe that affected the abnormal increase, but I read that Neupogen can cause Leukemia, which is blood cancer with abnormal high count of Neutrophils. The doctor ordered not to shoot Neupogen until this weekend.

I will have another blood test tomorrow, and see if the number is down in normal range.

The Genomic Test Result Arrived

First the white cell count dropped into the normal range. Thank you God!

Now after I asked for the status of the genomic test, the report finally came through email. On the first page of the 30 page report, I read there were 7 therapies and 16 clinical trials “with possible clinical benefit” for me. I was excited with the numbers as if the sun came out of the dark cloud. Yet as I read further carefully, I noticed that it was too early to get so excited.

First four out of the seven therapies are Herceptin, Tykerb, Perjeta, and TDM1, all of which I have already used. The other three are:
1) Affinitor for Hormone positive breast cancer
2) Afatinib for lung cancer
3) Torisel for renal cancer
Affinitor being available is good news but other two drugs seem to have harsh side effects and less effectiveness comparing with Affinitor.

The most of the recommended critical trials are still in phase one, which means both effectiveness and side-effects are unknown yet, and performed out of CA, or for hormone positive, which I am not qualified.

After all, I felt like I had opened a fake fruit basket, which has lots of stuffing at the bottom, but a few fruits only on the top–At a glance it looks like there are many options, but actually the realistic option seems only Affinitor.

Recently I see advertisements of genomic tests even on TV. They make me think as though such tests would confirm cancer cells dying by certain drugs in a beaker. Yet an actual test finds alterations of DNA, and match with drugs and clinical trials that target such alterations. They may work well with mild side-effects or may not.
I wonder if $5k was worthwhile for the test or not, but I should wait to hear what the oncologist will say about the result. The next appointment with her is 1/5/16.