Clinical Trial Drugs

Waiting, Waiting, and Waiting

“The nurse will contact you sometime today”
After I notified to go back to the vaccine trial, the patient care coordinator of the vaccine trial emailed me on 8/30. Waiting patiently for two weeks, I was disappointed again this Monday without finding any email from NCI. As I emailed again to ask what was going on, the phone call from the clinical nurse specialist came in right away.

” You haven’t submitted the progress note (the treatment history) yet. Ask your doctor to fax it,” said she.

I didn’t? I have thought I had sent all information a couple months ago. If I had missed something, I wish you had told me then—thinking so, but I said “OK.” After I hung up, I emailed my oncologist requesting the progress note, but the out of office reply came promptly.
By then I noticed, I had the medical record department send all the documents including the treatment history through email. As I checked the old emails, sure enough that it was done on 7/1 and since the attached documents would have expired in 12 days, I also had sent a reminder to her to download before the expiration. Because I didn’t hear from her, I sent the copy of email to the director and received the reply saying she would make sure the documents would be downloaded.

” I believe I sent the treatment history on 7/1. Will you please check if you have it or not?”
I emailed the nurse but again no reply. So I phoned. She answered, but said bluntly ” I have an emergency patient waiting. I can’t access the document. Just send the fax,” and hung up though I wasn’t finishing a sentence. She is the clinical nurse specialist. Probably I will see her often once the trial starts. Yet I already have a bad impression.

Meanwhile the patient care coordinator sent me the consent forms again saying the previous consents I signed were too old, so I had to sign them again. I was getting weary. I thought I could avoid this redo process, but I guess not. Instead of waiting for the oncologist, who was away from office, reply, I should just go to the medical record and ask to fax the documents once again–I thought.

Looking at my difficult face, George told me, ” Being a patient is your job.” He is right. I have time to take care of this. I grabbed the car key and drove to the medical records.

Yet, the bad luck continued. Standing on the line in the medical record office, right before my turn, I got a stomachache and had to go to a bathroom. As I was afraid, when I came back, the line became longer. “Kathy, be patient,” Telling myself, finally I walked up to a window.
“Will you please fax them?” I asked, but the lady told me, “We don’t do fax.”

I understand that fax is now out of date, but the research nurse asked to fax. My choice is to pick the documents up and fax by myself.

“How long will it take to pick up?”
“3-5 days.”

So it could be next week. Ahhh. My patience is running out. Oh Lord, how long do I have to wait? Help me before I become a grouchy old woman!

One Day Is A Thousand Falls

Monday, a week after I had requested the treatment history and some others, I went to the medical records without being able to wait for the phone call hoping the documents were ready. Yet, a lady at the counter told me, ” Not Yet…probably tomorrow.” Disappointing, but telling myself, “One more day,” I left the office.

Tuesday, after chemo infusion and picking up some meds at the pharmacy, I headed to the medical records again. As I gave the medical ID card at the counter, a lady looked at the computer and then left for the back. “Finally!” I thought. She came back with a thick blown envelop and gave it to me. It was heavy. Do I have to fax all of this? –I wondered. I sat at a chair and opened the envelop. The top page of the thick stapled documents said ” OUTPATIENT DIAGNOSTIC IMAGING” It was a report of an ultrasound dated on 8/4’16. I turned the page. Still I see the block letters saying “OUTPATIENT DIAGNOSTIC IMAGING” . It was a CT report I had in May. I flipped through about 100 pages of the documents. All of them said, “”OUTPATIENT DIAGNOSTIC IMAGING” and there was neither the treatment history nor the ECHO report which I needed. I looked again the inside of the envelop, and found a small envelop, which looked like a CD inside. I opened it anyway and then found a copy of the medical record request sheet enclosed. On the sheet I put several check marks, I noticed someone added extra circle on ” Diagnostic Images.” Last week when I came to request the records, I handed a copy of the NCI medical information request list, but that copy was not included in the envelop.

I started being overwhelmed that I didn’t even feel like to go back to the counter and ask the question. I had been eagerly waiting for this useless package feeling like a day were  a thousand falls. I had blamed the NCI trial nurse specialist for losing the fist hand medical information, but probably from the beginning, the treatment history was not included because of the same mistake.

What should I do? I am here at the medical records because the oncologist sent me to request all needed information for the vaccine trial. Yet even if I request it again, I am afraid that here they won’t be able to make such a specific document. I took out the iPad and emailed my oncologist for help.

Will she help me faxing the needed information or send me again to the medical records? How many more days will it take to receive her reply?—I don”t know.

I recalled the middle school chemistry tests I failed over and over though I studied hard. Now I feel the same. I feel like I will never reach the vaccine.

I opened the email again and started topping the keyboard. This time to God. The Bible says, ” Don’t worry about anything; instead, pray about everything.” (Philippians 4:6) My way of praying is emailing God.
” Heavenly Father, Please rescue me! I keep failing and now I get insane. …” I typed what I felt straightly. ” In Jesus name, amen.” I finished the email and hit the garbage icon.

Maybe Tomorrow

“He will cover you with his feathers.
He will shelter you with his wings.
His faithful promises are your armor and protection.
Do not be afraid of the terror of the night, nor the arrow that flies in the day.” -Psalm 91:4-5

Reading the Psalm, I recalled last Thursday night when I got so frustrated with the clinical trial situation, witch has gotten nowhere, that I could not sleep. The sparks of frustration caught fire on George, and then invited series of anxieties such as his health, his job, future finances, the kids safety and future, etc. It was the attack of” terrors”.

Next morning, after three days of the silence without no reply from the oncologist, I wrote a complaint email to Kaiser, It was when I was about to click the “send” command that the phone rang. Finally, the oncologist accepted my request and her case manager told over the phone that she would fax the missing medial information to NCI.

Praise the Lord!

Deleting the complaint, I breathed a deep sigh of relief: Next week I will hear from NCI about when to fly there. –I set the expectation high.

Yet no email on Monday and Tuesday.

September is almost over and the time is passing like the sands slipping down on the palm against my will to hold them. Yet, the Words of the Bible comfort me. The Lord never makes mistakes. He is faithful. Maybe tomorrow… I trust in Him to bring me the good news.

Reply Came

I waited on Monday and Tuesday, but on Wednesday, getting afraid that I might waste another week, I emailed NCI asking for the confirmation of the fax my oncologist’s office sent last Friday.

One hour later the reply came and I was asked if I could go there for the physical screening on the week of 10/17. Finally I can mark on the calendar! Although I was not given the exact appointment yet, I got excited and started searching for a flight and a hotel.

This is not for the vaccine shot, but still the screening. I could be disqualified somehow.
Cancer could be growing since last CT in May.
Frequent required CTs during the trial may cause leukemia.
The vaccine shot may make me sick.
Most importantly, the vaccine may not work as the oncologist is afraid of.

This is a huge gamble, but I feel like this is what God is leading me for. Even if I’m wrong, He is with me. Trusting in Him, I will work the Valley of the Shadow of Death.

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–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!

Good Day With The 1st Vaccine Shot

It was a good day. I received the first out of 5 DC vaccine shots.
George and I started this special day by driving to see beautiful autumn foliage. image

 

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This was one on my bucket list, and I was kept in awe with the breath-taking sceneries, which were like God’s gigantic canvas with countless warm colors with serenity and great elegance. I thanked God that I was here, a huge green land, in this season.

At 3pm, we arrived at NCI clinic. I was escorted to a room where were three big reclining chimo chars and told to wait for the vaccine to arrive.

“OK. Are you ready?” It was about 4:50pm, finally a nurse came with the vaccine. Slowly she injected the vaccine, one billion dendritic cells each in the two spots of the right inner forearm right under the skin. I felt pinched and the spots were getting bumpy and red immediately.
” Looks good, ” said she.

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She checked my pulse and blood pressure every 15 minutes for an hour, and then I was dismissed.
Several hours after the injection, now my arm is tender, but this is expected.

I pray that this two billion dendritic cells, can recognize cancer cells and command the T-cells to attack and destroy.

5th Day From the 1st Vaccine Shot

It has been 5 days since the 1st vaccine shot. The tenderness and redness are about gone, but last Friday and Saturday, day2 and day 3, I felt lethargic and stayed in bed almost a half day. Since the cough is continually worsening causing headaches like being hit by a hammer, and the triggers of vomiting, I thought the fatigue was also due to cancer progression. Yet this could be a side effect of the vaccine because after the rest, I felt better.

The Dendritic Cell (DC) vaccine doesn’t attack cancer cells directly, but they send message to T-cells, one of the immune systems, to attack the cancer cells.
So it takes a few months to see the result according to the doctor.

If the cancer cells are destroyed by T-cells, the inflammation will happen around the tumors as a process of healing, which may cause fever, pain, and possibly worsening the cough.

I think it’s still too early to see any response, but for a few days, the sharp pain around the chest wakes me up during the night. If this is not because of the vaccine, then it must be cancer.

Two weeks ago, after the CT scan, I had some UTI ( Urinary Tract Infections) symptoms. Being afraid of having an infection, which might have affected the next CT and then the vaccine shot eventually, I took an antibiotic on my hand. It helped, but now again, I have a difficulty of urination along with a back pain. This could be caused by the contrast of the CT. I will go to a family doctor tomorrow to have a urinary test.

I emailed the update to Dr. Wood at NCI, and will see what she would say.

Retreat

Since the cancer diagnosis in 2010, for the first time I declined a piano student, who wanted to take lessons. Up to now each time when someone asked a piano lesson, I’ve wondered how many years I could teach, but took them thinking positively. Yet this time, the nasty cough, which is not getting better at all despite the prescribed drugs, made me think taking a new student is not fair for the child.

I decided to step down from playing piano at the church as well as volunteer interpretation for cancer patients.

It is so sad, but hoping someday I get better, I decided to retreat. My cough stops only when I sleep and eat and that is Mercy of God.

Worst Traveling Season

My next visit to Bethesda is right after the Thanksgiving (the 4th Thursday in November), and George and I have to leave the worst day of the year to travel, the Sunday after Thanksgiving.

Usually it takes about a half hour to get to LAX, the airport, from our house, but a friend who drove to LAX right after Thanksgiving last year told me it took 2 and a half hours!  According to her advoice, we have to leave at 5am in order to catch the flight at 8:15am.

The following appointment is a week before Christmas and the January one is right after the presidential inauguration. I have to leave on Sunday the same weekend of the inauguration.

I was told by the government travel agent that she could not perches my flight tickets until a week before my appointments, but if I wait until a week before the appointments for the coming holiday season, I am afraid that there would be no way to get George’s tickets but also even my tickets, so I begged the patient coordinator to input the visiting schedule in the traveling computer system.  Thankfully at least I could reserve the flights and hotels.

Now the main concern is my worsening health.  Each visit will be a big challenge.  More than a year ago, however, God had provided us the financial provision to travel to NCI.  He has a plan, which won’t harm but prosper me. He is in this choice. Believing so I wait for patiently to be healed from the cough and the cancer.

Received New Cough Medicine

It was Monday morning when I emailed Dr. Wood at NCI ( National Cancer Institute) to change the cough medicine to something stronger. She immediately replied to me, and after 3pm, she told me I would receive the new cough syrup on the 16th or at latest the 17th.

As East coast is three hours ahead of West coast, probably the pharmacy was close to the end of office hours.

Yet surprisingly I received the syrup the next morning by FedEx even before 10am!

Kaiser, my home hospital also has a drug delivery service. If I order refills on line, I don’t need to go to the pharmacy to pick them up, but the refills will be delivered. It’s very convenient, but takes 2-3 days. NCI is on the other side of the US. 8 states are between us. I was very impressed with this speedy distribution system.

The new syrup is a narcotic including codeine. I started taking it right away expecting to see the quick effect. I’ve experienced stomach upset, nausea, and mild light headedness but the cough hasn’t changed so far.

As having an ice cube in the mouth or chewing a gum helps a little bit, besides sleeping, right now this is the way to suppress the cough in public.

God, come quickly to rescue me!

Is Vaccine Working?

Since the 1st shot of the vaccine, many things have been happening in my body. Yet the cancer has not been shrinking yet. The CT taken last Monday to see if there were blood clots in the chest showed that the biggest tumor went from 4.7cm to 5.1 cm, and others also increased in size. The doctor said this was to be expected and if the vaccine works, the tumors stabilizes or shrinks at earliest in two months.

I worried about brain metastasis when the vision loss happened though, the doctor said there was nobody who developed brain metastasis after participating the vaccine trial. This is good news!

If a patient has the brain metastasis, she/he is not allowed to be in the study. The reason is that the skull like a tight box, has not much room for the brain to swell with the inflammation as the result of the immune response to the vaccine and because of so, it could be serious.

As the inflammation is a necessary process of the healing, I am not sure if we can call it a side effect. Yet the inflammation in the lungs can cause not only pains and coughs but also fluid accumulation. My lungs also have accumulated fluid, which is a cause of the cough and the shortness of breath, according to the doctor. I may need to withdraw it at the next visit. Medical sites say that the procedure is safe and simple taking about 15 minutes or so with a local anesthesia, but what if I cough during the procedure? I am nervous already.

Chemotherapy is hard on the body, but the vaccine is not an exception, either—I am learning. Anyhow this is the option I chose. Believing that God is with me, I have to keep moving.