October, 2016

Received The Appointments

About 7:30am. the phone rang. It was from NCI in Maryland where it is three hours ahead from West coast. The kind patients’ coordinator said she would email me the appointment schedule for the screening and asked if there was anything else I would like to know.
As soon as I hung up, I jumped out of bed and opened the computer. There it was! I found her email with the screening schedule.

10/17
6:30am   Lab
8:20am   CT followed by EKG
11:15am   Physical exam

10/18
2:00pm   ECHO

10/19
8:00am~ 11:30   Bone scan
If I pass the screening, I will see the study doctor again and also have a financial conference.

10/20
6:00am   A catheter placement for the blood withdraw to collect dendritic cells to make a vaccine.
7:30am   Apheresis (blood withdraw, which will take 6-7 hours including the time to remove the catheter and post-monitor)

After confirming the schedule, I made a reservation of the flight, hotel, and rental car. Since I have to stop all chemo one week prior to the screening, I emailed the oncologist to let her know the schedule, also. As this week is actually an off chemo week, if I pass the screening, I will have a long break until next spring, when I find out the response of the vaccine.

Now I only need to wait for the day of the departure, but the persistent cough, which started in August, has been getting worse and that is concerning me. Also, while I was on the phone trying to make a reservation for a rental car, I experienced something like Vertigo. Everything around me was swinging or spinning. I have had a moment of swinging, which made me wonder if it was an earthquake several times in the summer, but this time it was clearer and longer like about 10-15 seconds.
If cancer metastasized in the brain, I am not able to receive the vaccine. I hope this is not the sign of metastasis.

So again this is like the Hawaii trip. Until I get there and pass the screening, I am uncertain and I have to continually pray for God’s protection and guidance.

Sacrifice for Tomorrow’s Medicine

“Taking part in NIH research is entirely voluntary. ”
“You may receive no benefit from taking part. The research may give us knowledge that may help people in the future. ”
These were words written in the first paragraph in the first letter I received from NCI. I’ve learned that cancer treatment is a gamble, but it is more so in a clinical trial. Mr. Aranami, the late chairman of TRIO (Transplant Recipients International Organization ) JAPAN, who passed away last spring with colon cancer, had said he chose the clinical trial because he wanted to contribute to the future patients, but this week knowing the fatal tragedy which happened to a breast cancer trial participant, I realized again that this perspective is so important.

She was in the study of TIL (Tumor Infiltrating Lymphocytes) immunotherapy, which is very much like the dendritic cell vaccine: taking out the TIL, a part of the white blood cells, which can recognize cancer cells, increasing them to be able to attack cancer, and giving them back to the body. I was interested in this trial last year and blogged about it, yet as I read an article written by a doctor, who lost his patient in this trial, I changed my mind. Then later I learned more that in this therapy a participant’s entire white cells, which cannot recognize cancer, are destroyed by chemo and completely replaced with the increased smart TIL, which can recognize cancer. There is a brave woman who went through this horrific procedure and beat the cancer, but I thought this was a life threatening therapy.

The tragedy happened when the patient’s white blood cells were destroyed by chemo. She was infected. Although her new robust TIL were transfused quickly, and they really attacked cancer cells, her infected organs kept failing and never recovered.

If I imagine the terror of her, her family, and the medical team in the last weeks, when their hope crashed into hell, I become speechless.

Is it OK to allow such a dangerous trial? I wonder, but if an object of the study is the therapy’s safety, maybe death is unable to be eliminated, and behind of the medical advance, there must be lots of sacrifices like hers.

“Unless the grain of wheat falls on to the ground and die, it remains alone, but if it dies, it produce much grains.” -John 12:24

She became the grain of wheat for our future medicine. As if a craftsman makes a beautiful stained glass from broken glass, God is able to make something beautiful even from such a tragedy. I believe so and pray so be it.

Seeking DC Vaccine–The Reason Why I Go For It

The gap between expectation and the reality

An article in Inspire (a cancer virtual community) said there is a discrepancy between the participants in the phase 1 clinical trial and the reality regarding the effect: The majority of participants join the trial because they are seeking a cure, running out of options of treatment, recommended by an oncologist, or want to help future patients, and 3/4 of them expect their tumors will shrink. Yet in reality, the phase one clinical trial’s drug response rates are typically between 4-20% and median over all survival duration is 6 months according to the article.

This explains why Kaiser doesn’t support phase one studies, but the poor numbers of the effectiveness didn’t surprise me. I have learned that although the medicine advances day by day, it is still a small step. I started searching a clinical trial because that was my oncologist’s advice, who was concerned me running out of treatment options. Yet, why did I choose the vaccine phase 1 study even going against the doctor’s opinion? I’ve been wondering about it.

The reasons why I chose the vaccine

First I spent so many hours searching the possible trials but I was disqualified for most phase 3 trials because I have used up most drugs the study wants to compare with the new drugs, and my choices were just a few. Most of them were phase one trials, which I can’t use Kaiser insurance but the vaccine is covered by National Cancer Institute.

Secondly, I was getting tired and weary with the side effects, but the vaccine seems to have only a flu-like reaction as a side-effect right after the shots though it may affect the heart also because the study includes the long-term observation of the heart function.

Thirdly, since when I first read and heard the news of  the vaccine’s success in 2011, I was impressed so much that I have been waiting for it and now it became reachable.

Fourthly I was convinced by the logic or hypothesis of the study, the breathtaking animal study’s result, and part 1 human being study result (50% response rate) that were explained by the study chief doctor, whom I will meet next week in NCI.

And lastly, maybe this is silly, but I felt some connection between two “Bethesda”s, in Maryland and in Israel where I prayed for healing with George and friends two years ago. Maybe the prayer in Bethesda, Islael will be granted in Bethesda Maryland.

Going against the doctor is crazy and I understand the risks I face including death, but at least if I can give data for the future patients, it won’t be wasted. Dr. Slamon at UCLA said it takes a long time to see the result, maybe 5-6 months, which is a time to complete four shots of the vaccine. If it won’t work on me, I am hoping that I will leave the study before it gets too late and get on something else.

New drug is in the pipeline 

Seems like in a year, a new targeting drug for HER2 + breast cancer will be approved by the FDA. I wish at least the vaccine to be effective until then.

God has been so good to me navigating and sustaining my life for last 6 and a half years. He never makes mistakes. His plan is perfect. Thus I have to trust in Him no matter what. I will leave for the screening in 4 days.

Seeking DC Vaccine–Overcome Anxiety

When the path gets rocky, seeing the obstacles as opportunities to trust God, instead of getting discouraged.

The message in Christian magazine Upper Room I read in ESL Bible class inspired me.

My departure to Bethesda is just two days away. My feelings are mixed with anxiety and excitement. As I was swaying left and right, the Holy Spirit spoke to me through the short essay.

” Many times in the Bible, circumstances got worse before God’s promises became reality: Joseph was imprisoned before becoming a leader; Abraham was asked to sacrifice his son before becoming the father of nations; Paul was blinded before becoming an apostle to the Gentiles.”

Yes. Like Jesus resurrection, God’s blessing comes at the very last moment when we hit the bottom, in an incredible astonishing way.

Then we read Remembering How to Laugh in George’s book Dusting for God’s Fingerprints. It was about the story of Abraham and his wife Sarah. Abraham was called to leave his hometown that had provided him a wealthy comfortable life, for the promised land, where he had no idea of. My thought ran to his emotional ups and downs from the time he was told to do so till he reached to the land, Canaan. He must have had both anxiety and excitement just like I feel now. Yet God was faithful and His promise was fulfilled.

Imagining the Abraham’s journey, I identified myself with him, and thought maybe God is really guiding me in this crazy adventure of the vaccine trial. God may be saying, “Follow me. I will bless you. Through you I will bless many people.”

Maybe I am too naive, and this is a shallow imagination, but I got encouraged again.

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” —Jeremiah 29:11

Reciting His words, I am going to Bethesda~!

Seeking DC Vaccine–Lost Luggage

The weather was perfect. The 4.5 hour flight was smooth and on time. The last night was also wonderful being invited by a friend couple to a great view restaurant to celebrate a week early my birthday. Receiving lots of cheer, as well, I thought everything looked good to start my big adventure.

Yet the first trouble happened at the luggage claim. I couldn’t find my luggage. Being told by an assistant that the airline would track down the luggage and deliver it later, we left the airport and headed to Herz.

“How about a Nissan Sentra?” A man at the desk asked us, and that became our car. We got in the shiny gray car, but the key looked like a key holder without a key and the keyhole was nowhere. Trying to figure out how to turn on the engine, we opened the hood and moved the wiper instead. It was like a comedy! Finally we learned how to drive by a staff and we arrived at the hotel in Gaithersburg, a northern city of Bethesda around 7:00pm.

According to the text, my luggage was left at LAX, and arrived at Dulles VA at 9:00pm. It should be on the way, but as of now after 1am, it hasn’t been delivered yet.

Tomorrow we want to go to Annapolis, a beautiful port city being famous with US Navy Academy. yet I don’t know if we can make it or not. Oh, Lord, please bring the luggage ASAP!

Seeking DC Vaccine–The Day Before Screening

It was a long day yesterday, but the luggage finally arrived after 2am!

This morning, however, we faced the new challenge. We are staying in Gaithersburg, 13 miles north of Bethesda, and I wanted to make sure how to get NCI by rehearsaling. When I tried to type the address in the GPS, it didn’t accept the address though I tried several times. So we followed a copy of Google map I brought, but still that was not good enough, and we took the wrong route.
After making many wrong turns, finally we found the building, which had a different address than the address on the NCI letter. No wonder the GPS didn’t find it.

I am so glad that we arrived here early enough. If I had arrived today, no way I would make it to the 6:30 appointment tomorrow with the lost luggage and the unrecognizable address.

By the time when we arrived Annapolis it was after 1pm, but the red brick buildings, lofty churches, peaceful canals were so cute like Charles Dichen’s Christmas Carol Village and I was happy that we could make it!
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I am still coughing horribly and convinced pretty much that this is because of cancer. I will find it out soon by the CT I will take tomorrow, but I got lots of endorsements for the vaccine from the ladies in Inspire, the breast cancer virtual community, and one lady even said that she had received the dendritic cell vaccine at Univ. of Pennsylvania and has been cancer free for 2.5 years.

God is with me, and I will march to the screenings!

Seeking DC Vaccine–Good Signs

On the first day of the screening, George and I arrived at NCI before the sunrise.  Starting from a lab withdrawing 13 vials of blood, I had a brain & torso CT, EKG, diagnostic interview, and physical exam.

After then I met the chief study doctor, who had answered my numerous questions through email so patiently and in a comprehensible way.  She was tall, beautiful, and smiled all the way to the end; very pleasant, intelligent, and caring.

It is still too early to conclude, but if I consider that the doctor said to make a year long visitor pass, as well as the negative result of the brain CT, the chance to enter the trial is high.  I was tense in the morning being afraid of getting late, but, on the way back to the hotel, my heart was light with the good signs.

Surprising Offer

At night I found there was an unbelievable comment on my journal in Inspire, a virtual breast cancer community.  Someone, who must live near Bethesda, offered me rides and even to stay in her house!  Thanking her, I declined the offer, of course.  Yet she was like an angel.  I am totally a stranger for her, and she is also a breast cancer patient.  I was deeply touched by her kindness.

More and more I think Inspire is a great community not only expanding the knowledge, but also connecting to the good quality of people.

Tomorrow I will have ECHO. I praise the Lord and pray for another good day!

Seeking DC Vaccine–Accepted Into Vaccine Trial

It was another long day getting up @5am, but in the afternoon, I heard the good news:

I WAS ACCEPTED INTO THE DC VACCINE TRIAL!!

I am the 30th participant and as a breast cancer patient,the 6th in this study.
Next step is collecting white blood cells ( apheresis ) tomorrow to make the vaccine, and then I will return to NCI in two weeks to receive the first shot. However, if a CT I will take prior to the vaccine shot on that same day shows aggresive growth ( >20% than today’s result) I will be disqualified.

The report of the CT I took two days ago said the biggest tumor in the lung is now 4.7cm growing from 2.9 cm in May and there is new suspicious finding in gastrohepatic lymph nodes, though up till a week ago, I was on chemo. This progression appears fast for me, so although I was accepted today, I’m still not quite sure if I can get the vaccine. Anyway passing the screening is the best result it can be as of today, and I thank all of you, who stood on my side praying for me, and most importantly God.

Seeking DC Vaccine–Resolution On Birthday

Today is my 7th birthday since the cancer diagnosis and I became 62. Yesterday, the last day in NCI, Dr. Wood, the DC vaccine study chief doctor gave me a birthday cake after the long procedure of Apheresis ( collecting blood cells to make the DC vaccine) . I was so surprised and learned about her character again.
She has so much passion for the DC vaccine, which may cure so many men and women, and she cares for each patient. I thought I came to the right doctor.

The DC vaccine works slowly. Meanwhile cancer grows. We don’t know if the vaccine will catch up to cancer and destroy it eventually or is not working. Other words, I will be saved or die.

Because all the cards I had failed, this must be my last shot and the last gamble. Getting to know Dr. Wood, I thought I came to the right place to bet my life.

The Bible says, ” there is no greater love than to lay down one’s life for one’s friends.” Jesus demonstrated this intimate love on the cross. If I die to save someone, that must be the best way to die.

I will go for the vaccine shifting my attitude, and aiming for this purpose. I want Dr. Wood to find the real cure and I am happy to contribute for her study giving myself. If I am cured, that will be more than awesome, and if I die, that’s also the best way to die. Cancer wants to take away my life, but I am going to give it to God’s Kingdom.

Once I shifted my focus, all the anxieties regarding the vaccine and cancer were replaced by His peace.
I’ll go as far as I can with the Lord, who loves me so much!

Seeking DC Vaccine –Long Travel to Clinic Is Hard Work

One reason why I chose the vaccine trial – crossing the US land from west to east for five hours – was I had heard that the NCI would pay for my flight and some of the accommodations so I don’t have to worry about the financial burden. Yet I started realizing how hard flying to the clinic is.

Again, I waited patiently for the government travel agency to contact me for booking the flight, but I was getting nervous looking at a clock on Tuesday, which was just 6 days from the next visit. If I have to book George’s flight and a hotel by myself, I should do ASAP before the ticket or a room will be sold out. I didn’t want to bug the persons who are in charge, but as the time passed 1 pm, which was 4pm in East time, not being able to wait any longer, I emailed and then made a phone call to ask what’s going on. Soon after, finally the phone call came from the human service.

” Is it OK flying Sunday but arrive next morning?” The agent asked.

No! I haven’t received the appointments yet, but if the first appointment is early in the morning like the last week, and if the flight is delayed, or the luggage doesn’t arrive, I would be in a big panic.

“How about arriving at 9pm on Sunday?”
“Is there anything available arriving earlier?”
” No,” said she.
OK then.

“You will leave on Wednesday, right?” she continued.
“Well, I haven’t had my appointments yet, so I don’t know.”
“I was told so.” said she and gave me a flight, which arrives at LAX on Wednesday night. Last week we arrived here before noon. I wish I could have the same flight, but I should accept what I am given.

“Can you book for my husband, too?” I asked the next request.
Tap, tap, tap… After the sound of tapping a keyboard, she said, ” It will be $900 including the service fee.”

$900? It’s like going to Japan! Last week I paid almost the same price for two tickets. If the price is so high, it won’t help us. The lady said I could search for the cheaper ticket on line with the same flight. So I did, and then found a few flights which arrive at an earlier time with much lower price. I called back and asked if I could change the flight.

“Spirit? No, we don’t have a contract with that airline,” she said. Desappointing. I asked for the second choice, and that was accepted. Being able to fly on the same airplane with George was a big relief, but as the agency can’t offer the flight until the last minute, this hassle seems inevitable even in the future.

Next was a hotel. In Bethesda there are several hotels, which offer discounts and shuttles for NCI visitors, but if an appointment is early, like 6 am, the shuttle is useless, and as the date we will stay next week is getting close, the price is going up and the rooms are being sold out. Running out of patience to wait for the contact for this booking, I reserved the hotel by myself.

Usually when I use a flight, I buy insurance for the sudden cancelation or a change of the flight. Actually last week after Apheresis, I kept bleeding from the groin where the catheter was removed. I was allowed to go back to the hotel, but told to call 911 if the bleeding happens again. I was not sure if I could catch the flight next morning, but with the insurance, there was no need to worry. This time the side effect of the vaccine seems just a skin reaction without a fever, fatigue, nausea, etc. I hope that’s true, but without the insurance, I am a bit nervous.

Traveling to the clinic crossing 8 states requires hard work. There is so much stress even with financial help. Yet If this vaccine saves my life, I have to accept all the troubles I face. This is my choice. I have to be patient.

Seeking DC Vaccine—Departing to Bethesda again

I thought I could barely wait for the two weeks till the day of the first vaccine from the screening, but it was quick. George and I will leave for Bethesda tomorrow morning.

Monday, the first appointment is a lab @ 7am followed by a CT scan, pulmonary (lung) function test, physical exam, and in the afternoon, I will hear the CT result, which determines whether I get the vaccine or not.

The pulmonary test is to control my worsening cough. If I start receiving the vaccine, and if that successfully commands the antibody to attack the cancer tumors, it will cause inflammation around the tumors and as a result my cough will get worse. Dr. Wood wants to suppress my cough before it happens.

Yet, if I fail to pass the CT scan, this treatment won’t be my option either.

Last Wednesday I talked with the primary oncologist at Kaiser about what to do if I couldn’t get the vaccine: I want to be on Haraven, a chemo right away, and meanwhile pursue the immune suppressive PD1 inhibitor clinical trial. Yet if cancer is growing 20% or more in just two weeks so aggressively, probably nothing will be good enough to control cancer.

If I start thinking such things, I get depressed and scared. Yet my eyes are on God who says, “ Do not be afraid! Be strong and courageous, for the Lord your God will be with you wherever you go.”

The weather seems nice, and the autumn foliage must be at the peak. With hope, I will leave for Bethesda!

Seeking DC Vaccine — CT was Stable!

” God, let me walk on the stormy water.”
That was my prayer this morning. Remembering Jesus scolding Peter, ” Why did you doubt? You have so little faith,” I meditated that He was inviting me to walk on the water, and I told myself not to be distracted by thinking of the CT result, but just focus on Him, who has been always faithful, loving me so much.

The CT was at 9am, and the result was given after 3pm.

“it was not much different from two weeks ago, so you will have the vaccine tomorrow,” said Dr. Wood with a smile.

Praise the Lord! He is good all the time!

My appointment for the vaccine tomorrow is 3:30pm, but I was told to come by 3pm. The vaccine will be given on my forearm skin by two shots. After then I will stay on a bed for an hour just to make sure I will be OK. Hope tomorrow will be another good day!