June, 2016

His Love Never Ceases

Last week, many friends from the Bible Study came taking turns to show their support and care by working inside and outside of our house.  They painted, weeded, cleaned the garage, fix the broken wall, etc.

As the first day was over, I, who worked together, got so exhausted, and the 2nd day, I could work only a half day and had to take a  long rest on the bed though, the friends, most of whom were older than me, worked hard 9am to 4pm being burned on their faces under the strong sun beams.

Three Day volunteering

I was impressed with their vitality, skills, and knowledge, but most importantly I was truly touched by their kindness.

I am the one who has to fight against cancer, and it is George, who has to fight against Parkinson’s Disease, but their message that they are always behind us with prayers and loving care surely reached to me.

Then last night I found an envelop in the front yard.  Someone had threw it over the gate.  As George opened it, there was lots of cash with a note saying, ” Praying for both of your health.  Thank you Jesus!” There was no sender’s name.

George and I don’t deserve for any of those kind acts.  We are not able to return their favors, either.

God must have moved each person’s heart in order to say He loves us.

Although storms never cease, His love also never ceases!

Farewell

Yesterday was the last day to give a piano lesson for my piano student I have taught for 6 years. She, who has progressed so much, will go to a better teacher.

It was not many days after my diagnosis of cancer when the 7 year old little girl came to me being escorted by her mom. It was the time when I was going to retire from teaching piano I have done for over thirty years in order to focus on the treatment. Yet, since the mom understood and accepted my cancer circumstance and the possibilities of sudden cancelations or a termination of the lesson, I changed my mind and started teaching her piano.

She has never whined or complained, practiced well, and lerned quickly. Especially this past year she improved so much that I also enjoyed teaching her. She was an excellent student.

So it was difficult to say” Good bye” and I know I will miss her. Yet I am thankful that I could accomplish my role or responsibility God gave me without let cancer interrupted the 6 years of the lessons.

In this world there are tons of sad farewells, but someday at the end of our history, the God’s Kingdom, where is no more farewell, will come. Focusing on that promise, I closed the chapter of being with this remacable student.

Tykerb Again

I started Tykerb (250mg x 4), an oral targeted chemo drug, last night after the Herceptin + Abraxane infusion.

If Abraxane and Taxol were basically the same drug, adding Tykerb to Herceptin +Abraxane is the same regimen as Tykerb+ Herceptin +Taxol, the golden combo, which led me into the remission four years ago.

However how to administer this new regimen is a little different from four years ago. Back then one cycle was four weeks, but this time it’s three weeks and I have to take Tykerb every day instead of taking it for 21 days followed by a week off.

I experienced horrible diarrhea and skin rush at the beginning of the first use, and it took six months to control the side effects by tapering the dosage, so I am a little nervous to take Tykerb without a off-week. The doctor understands it, so she prescribed this med only for 14 days. If I do well. she will give me the same dosage.

Tykerb did really good job with Herceptin and other chemo in the past, but usually the 2nd round doesn’t work like the first time. TThis is also my concern. However as I dropped the option of Poziotinib clinical trial after I learned that the progression free time of this med was only 13.38 wks while the possible side-effects are severe diarrhea and skin rush on the face (!), and also it requires every 6 wk CT scans, which is twice as fast as the current pace, now my bet is on Tykerb.

As of now if I can control the side effects and continue to be on it for at least three months, I would be happy.

Clinical Trial Doc. Recommended

I tried a gene test to find out if there were any medicines which matched to my cancer, last year. Yet the oncologist said this gene matching trial is slight different from the last one using a different method and different investigated medicines.

In this phase 2 trial, there are 24 medicines, which effects and side-effects are studied in the trial. In the phase 1 trial, there were only 10 medicines, and maybe that was the major reason, but only 9% of the participants matched with those 10. This time in phase 2, the medicines were increased more than double and as new possible medicines are developed, those will be added in this trial. In this way, the scientists hope to boost up the matching rate to 20-25%.

This trial is not only for breast cancer patients but for patients who are running out of the treatment options or who are having difficulty finding the options, and have measurable cancer. Last Aug. when the trial began, so many applied that the trial was closed in just three months in Oct. The oncologist worries even this time, when the trial reopened, it may close quickly.

She is also concerned that Abraxane is not working anymore and adding Tykerb is not good enough. Yet, If I want to be in this trial, I have to hold the treatment for 10 weeks, and even after then, my chance to match the medicines is less than 20% or even 10%, and even if I match one of the investigated medicines, nobody knows if it will work or not.

Either way, staying on the current regimen or trying the clinical trial, my chance seems so little. I don’t know which is better. I have to pray for the guidance of God.

Vaccine Trial in Hitachi?

If the current regimen may not be effective enough and the clinical trial the oncologist recommended doesn’t sound exciting, either, I thought I should look for the 3rd option.
So I went back on the hunting. This time I used National Cancer Institute site instead of ClinicalTrials.gov.

When I used “Metastatic HER2 Positive Breast Cancer” as the key words, surprisingly 225 trials came up. There must be no other countries, which offered so many trials like the US, and I was so thankful that I lived in such an advanced country.

AS I looked through the 225 trials one by one, I found the dendritic cell vaccine trial I had written about in the blog two years ago. This is a phase 1 trial, which is the first time study with human beings, so there are so many unknown factors or risks, but as I scrolled down the page, I found it was available in CA, and under the line of “California”, I read Irvine- Hitachi Medical Systems America Inc.

Is it the same Hitachi, which produces appliances?
I checked the website of Hitachi Medical Systems America Inc. It looks like the company is selling medical imaging machines like a CT and MRI, but I couldn’t find anything about the vaccine or cancer study. A big question mark popped up in my head, but if this in not a mistake, Irvine is only an hour away from my house. This trial can be hopeful. I left a phone message at Hitachi and am waiting for the return phone call.

I Wish I Were A Mouse!

” In the mice study, the vaccine was successful.” I said.
Then a friend answered, ” I can make you a mouse bringing you a long tail, big front teeth, and cheese!”
Her joke made me laugh, but I really like her idea!

Though I haven’t heard anything from Hitachi yet despite two phone messages I left, I received some interesting additional information about the vaccine from NCI.

1) Cost

Expensive investigated drugs and all sorts of exams in the trial are sometimes covered by the study sponsors or sometimes to be subjects of individual health insurance. Since my insurance is Kaiser, which applies only for Kaiser hospitals, if a trial outside of Kaiser asks for a health insurance, it is almost impossible for me to participate the trial. Yet thankfully for this vaccine trial, NCI covers all the costs of the study including the traveling expense. This makes possible for me to fly to outside of CA if Irvine is not the option.

2) Procedure of Vaccine

Unlike ITL therapy, which requires to be admitted in an ICU, a patient’s white blood cells, which include Dendritic Cell (DC) are collected by 1-3 hour procedure using needles, which are shot under the skin. Once the vaccine is made by the collected DC, it is given four times. The side-effects appear to be flu symptoms like fever, fatigue, headache, etc, but only right after the vaccine injection, and other than that, it says the procedure of vaccine is safe and no need of hospitalization.

樹状細胞が含まれる白血球は、献血採血と似ていて、片腕から抜かれる血液は血液を分離する機械を通り、再び反対側の腕に戻される。

Collecting white blood cells for the vaccine is like a procedure of blood donation.  The circulated blood goes from the needle on one arm to a machine, which separate white blood cells from other blood cells and goes back to another arm.

3) Effectiveness

Since this is a phase 1 study, there is no data in human beings, but the theory is very impressive: While targeted drugs such as Herceptin, Perjeta, or Kadcyla, work only on the small part of HER2 protein, which characterizes HER2 positive cancer, the vaccine is supposed to induce antibodies to work much more comprehensively.

分子標的薬

Targeted drugs (Trastuzumab and Pertuzumab) recognize only a small portion of HER2 protein

The Vaccine is supposed to induce a patient’s immune system and make comprehensive antibodies called polyclonal antibodies.

左上よりワクチン接種後4日目、9日目、11日目、14日目、19日目、26日目

The shrinking cancer in the mouse

The problem is there is a huge gap between a mouse and a human being. It is not unusual that a clinical trial failed although the animal trial was successful.
Umm, I wish I were a mouse!

Minnie Mouse

Thinking More Of Vaccine Trial

Important role of vitamin D in Immune Functions

The Dendritic Cell vaccine trial checks vitamin D level by every four weeks. According to NCI (National Cancer Institute), “The exact role that Vitamin D deficiency plays in cancer has been controversial; but we do know that Vitamin D plays a critical role in cellular and immune functions within the body.” I know vitamin D and a baby aspirin could prevent cancer relapse, and actually I am taking vitamin D 4000IU/day, but it is interesting to see how vitamin D and the vaccine work together.

Clinical Trial is for future

Even though DC vaccine seems safe, this can fail with human beings. Since it is a trial, it requires frequent CT scans including not only the chest and abdomen but also bones and the brain. Exposure to huge doses of radiation is also scary, and I have to admit that the participants are human guinea pigs. Yet, I remember Mr. Aranami, the chairman of TRIO (Transplant Recipients International Organization) Japan as well as a good Christian, who passed away this spring with colon cancer, said he had chosen a clinical trial because he wanted to contribute to future patients. If I change the focus from myself to others, like Mr. Aranami did, probably nothing will be wasted and I’ll be able to accept becoming a “guinea pig”.

Need to Move Fast

The more I think of my options, the more I am leaning towards the DC vaccine trial. I am not sure if I am qualified for this trial, but the trial will accept only 65 participants in the nation and has already recruited 30 patients for part 1 study, which tested the safety of the vaccine and the dose of the vaccine. Then Part 2 will accept only 35. If I want to participate in this trial, I need to move fast. I emailed the oncologist about this trial with all the information I have received from NCI, and also called UCLA Medical Center to make an appointment with Dr. Slamon, who invented Herceptin, to hear his opinion about this trial. Most importantly, I am praying to open the door if this is God’s will.

“I Am Not Able To Refer You To The Trial”

The oncologist sent me a shocking reply this morning.
She can’t refer me because it is a phase one study.
I stared at the short paragraph email wondering if this was the answer from God.

It was yesterday that I was encouraged by a friend to be bold as I shared with her that I haven’t heard from NCI since last Tuesday though I sent the 2nd inquiry and maybe it was because the trial was closed recruiting enough participants. She told me to push by making a phone call to ask again.

Before I received the reply from the oncologist, I had emailed NCI again including two more contact persons this time. Reading the oncologist email, as I was wondering if I should let the trial go or not, the reply came from NCI. it answered my questions that 1) I, who has used multiple HER2 targeted drugs, can be qualified for the trial. 2) CT’s radiation doses are minimum, and 3) NCI is the only location that will make a personal vaccine. The trial is still open and so far I am qualified, which encouraged me to write back to the oncologist.

“The reasons why I am interested in the vaccine trial are:
1) the side-effects are mild and safe
2) I don’t need to hold the therapy for 10wk but only 2wk
3) If it works, the result will be greater than any other drugs according to the mice study
4) If it fails, I can go back to the conventional chemo quickly
5) I can try it right now when the brain is still clear (If cancer is in the brain, the patients are excluded from the study)

The reasons why I am concerned with the matching trial are:
1) While holding the therapy for 10-12wk, cancer may spread into the brain, and then I will be disqualified from most of the trials
2) my chance to match to the drugs seems very little.
3) Even if I match, the side-effects and the drug effects are unknown.”

She is a doctor and I am a patient. If there are any facts, risks, or concerns I don’t know, I will listen and humbly accept them, but I have to keep asking questions until I fully understand why she is right and agree with her.

A few hours later, the reply came. She said she would ask her group their opinions next week. I am thankful that she is open to consider my request.

I trust my Lord, who loves me and is with me, 100% whether the door of the vaccine opens or not. If this is His Will, the miracle will happen even in the very last minute just like the Hawaii trip. I pray and wait upon His answer patiently again.