July, 2016

Decision

I made a decision to apply for the Denderitic Vaccine Trial.

Yesterday I requested Kaiser to prepare all information needed for the trial, but the trial will close any day once the participant number reaches 30. If my information arrives over there on time, the institute will evaluate it to determine my eligibility, and if I am eligible, I will be invited to the institute hospital for a physical exams including CT scans and lab tests. It is a long way to go to be accepted.

Two days ago, when I saw the oncologist, she said that she didn’t think the vaccine was ready yet, and the matching trial would give me better chance to control cancer just as she explained in the email. I also repeated the same as the reply saying the reasons why I was leaning towards the vaccine trial.

Her denial of the effect of the vaccine affected me, but still, I was not convinced that the matching trial was a better choice.

She said three-months-off therapy would be safe because my cancer has been progressing slow, but what if she is wrong? And what if I would not match with any drugs after then? Even if I found a drug, how much effect could I expect from only single drug? Or the side effects could be so severe that I might not be able to continue the drug. If I thought of the price as it fails, her explanation was not good enough to change my mind and I know that even if I accept her choice, without the success, I would deeply regret and blame her.

” If you still want to try the vaccine, you have to pay from your pocket,” said she.
Oh, when she said no referral, she meant the insurance!
As I told her the institute would pay all the cost of the trial including for traveling, she said, “Then I don’t need to bring it to the meeting. Go and do it.”

Regarding the cost was on the letter I had attached to the email to her. Not knowing even the location of the trial, she didn’t seem to have read the attached. Maybe she didn’t need to know any of such but the fact that this is the phase 1 dendritic vaccine trial, which was enough for her to conclude, and she might think I was a stubborn foolish patient though, at the end of the meeting, she accepted my choice, or she had to accept it.

Going against the doctor’s opinion made me depressed. As I got home, I read the long letter of the information regarding the vaccine trial once again. If I have to choose a clinical trial, even if the vaccine trial is phase 1, the benefit as it works, and the risks as it fails look still better than the matching trial. I drew the same conclusion.

” God, if I am heading to the wrong direction, please close the door and stop me.” Praying so, I’m also hopeful remembering the prayer of healing in Bethesda in Israel where I traveled two years ago, the same name city as where the trial is held in MD.

National Cancer Institute (NCI)

I am not sure if I can participate in the vaccine clinical trial or not yet and I should prepare the next option though, the more I learn about NCI and the city Bethesda in MD, the more I anticipate. If I set my expectation high and it won’t go my way, I will be very disappointed, but it is getting harder to control my expectation.

The city’s name Bethesda, which means House of Mercy in Aramaic, came from a local small church, and the church took the name from the pool Bethesda in Israel, where Jesus performed a miracle of healing on a disabled man, who was waiting for 36 years to get into the pool, which had a healing power when the water was stirred. So many sick and disabled people were waiting to get into the water that he didn’t had a chance to get in. Yet Jesus healed him by commanding him to rise and walk (John 5:2-18). Two years ago at the pool Bethesda in Israel I visited, I prayed for the cure from cancer.

In Bethesda in MD, which is only 13km north from Washington D.C, there are several huge national medical organizations and it appears like a city of medicine. I didn’t know until now, but NCI is a part of National Institute of Health, which is the oldest and the primary medical organization in the U.S. “with 1,200 principal investigators and more than 4,000 postdoctoral fellows” according to Wikipedia. Compared with this place, not only Kaiser, but even UCLA Medical Center looks so tiny.

I really long to visit Bethesda, MD as well as this giant health organization! Since I had to send the all the information for the trial by myself, I am worried if they have arrived at the right place on time, but, I hope they had and to hear that I would have passed the first screening, the first step to go to Bethesda.

Live With Great Joy

A long time ago in Japan there was a big hit TV drama, “Fixing on Love and Death” , which was based on a true story about a short lived but beautiful romance of a young beautiful girl who died with sarcoma at age 21 and her boyfriend. I was a child, but remember watching it feeling so sorry for both.
cancer is deadly and we feel sorry for a person with cancer but seldom think she/he can be happy as well as a healthy person.

With cancer is it impossible to live happily or joyfully? I think it is very possible.
Living with cancer is like a roller coaster ride. Sometimes it plunged fast, and is scary, but not always. After plunging, often it goes up, and goes even to the high point, where he/she can find strength, hope, and inspiration.

The key is thanksgiving. Counting blessings such as smiles and kindness of friends and the family, the time playing piano with or without young students, a cute humming bird flying from flower to flower, a walk on a beach, a shaved sweet ice, plants growing an inch higher than yesterday, etc, bring me joy and comfort. They don’t cure cancer, but through all of those, I feel close to God, my Father in Heaven.

If my happiness depends only on health, finance, or beloved family, it is devastating as I lose any of those. Although I wish not to lose those as much as possible, there is no guarantee or promise not to lose. The only thing I can count on is God, who promised never to forsake me. Instead of looking at cancer or the uncertain future, if I keep fixing my eyes on God by counting His blessings, His unconditional love fills my heart with His strength in the midst of the cancer battle.

Even if I get too sick to eat or get up, or unbearable pains attack me, the sicker I become, the closer God comes. And the moment of death is the moment of the encounter with God, Father in Heaven!

If my tie with God gets stronger, if I walk with Him, who loves me and protects me, even with cancer or with declining health, it is possible to live happily with great joy—That’s what I believe.

“But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.”–Isaiah 40:30-31

Live With Great Joy 2: Cast Burdens

I easily complain, criticize, and worry just like my mother. Yet it is difficult to live happily with such a character. Then what should I do?
Jesus said, “Come to me all you who are weary and burdened, and I will give you rest.”–Matthew 11: 28.

I imagine a big garbage bin and toss all crap, which bug me, one after another and give it to Jesus. Yet some are so huge that it takes a long time to toss, or some pile up right away even after I toss them.

“Jesus, I am so sorry, but I am so fed up! ”
” I hate this and that…”
“I am so worried that it’s excruciating!”, etc.

I talk to Jesus honestly, because He can see through my real thoughts and feeling even if I want to hide them, and ask Him to wash away all my dark spots replacing them with His peace, patience, and kindness so I can get closer to Him.

Life is so tough that I can’t carry all the burdens by myself: No way I can solve all the problems and make my life “happy” by myself.

I need Jesus, who tells me to leave my burdens, lifts me up as I trip over, or rescues me if I fall into a bottomless dark hole. Then it becomes possible to live with great joy regardless of the circumstances.

The 2nd Opinion from Dr. Slamon

I was worried if the information for the vaccine trial I sent to NCI had been arrived at the right place or not, but thankfully it did. Monday NCI sent me a lot of consent forms and I sent back with signature next day. I will hear about next step in next week.

Meanwhile, I visited Dr. Slamon, who had invented Herceptin, at UCLA yesterday. Usually I have to wait for a few months to see him, but this time it was quick.

First I asked him about Afinitib, one of 24 drugs in the MATCH clinical trial, the primary oncologist recommended . In this trial, patients take a gene test to find some matching drugs out of the 24 drugs regardless of the location or the type of cancer. I may find more than one drug, but it looks like there are only two available for HER2 positive, my type. One is TDM1, which I’d already used two rounds, and another is Afinitib, an investigated new drug.

Dr. Slamon said that this drug was expected to work like the combination of Herceptin and Tykerb, which I have used since 2011 and already have allowed progression. So he didn’t recommend this trial.

Second, he answered me about Immune Checkpoint Inhibitor clinical trial, which I learned from a Japanese cancer patient in Germany, who had sent me a comment on my blog. He said this trial is open at Cedars Sinai Hospital, which is as big as UCLA in LA, and gave me the investigating doctor’s name and her phone number. This is his first recommendation for me. I called there this morning and requested the written information.

Third, he said OK with the vaccine trial though it would take a long time to see the effect. I asked how long, and then he said a few months.
“Meanwhile will cancer grow?” I asked again. He said NCI would explain for that answer but it may be stable.
The vaccine will be given every four weeks for the first three injections and lastly in 8 weeks. It will take about 5 months to complete, so he might mean until the completion of the vaccine, the effect won’t be seen. Because cancer is a progressing disease, if it’s stable, this is also good effect I believe. Yet in the mice study the cancer grew before it started shrinking. If cancer grows in five months while I finish 5 injections of the vaccine, that would be scary.

Lastly if I won’t participate in a clinical trial, I have only two unused drugs left. I asked if I could use them with duo of Tykerb and Herceptin because I feel like Herceptin is no more effective. He said, ”Yes.” “With the same dosage as of now.”

It was a good meeting with good feedback. As I will see my primary oncologist tomorrow, I’m going to bring those 2nd opinions and review the next strategy with her, but until it becomes clear if the checkpoint trial is surely my option, I will continue to pursue the vaccine trial.

It has been a year since the last visit to Dr. Slamon though, I could discuss more new therapies. If I can buy time, someday I may be able to see the day to beat cancer.

Immune Checkpoint Inhibitor Drug Trial

It took a week to receive a reply from Cedars. After I requested again the information of the immune checkpoint inhibitor trial, the email I receive said that there was no such a trial.
Since I heard of the Immune checkpoint inhibitor drug, I have been searching the trial, and because the trial for HER2 positive breast cancer was only available in Europe and I couldn’t find anything but for triple negative breast cancer in the U.S., I almost accepted the reply.

Yet as I forwarded this reply to Dr. Salmon’s office, his nurse recommended asking Cedars once again, so I did. This time Cedars said there was the trial. Yet, I couldn’t identify any key words such as “checkpoint”, “PD1”, or the drug name “Keytruda” in the description of the trial I was given. It looks like a totally different trial. So I am asking UCLA again to confirm if this is the right trial I am looking for.

Meanwhile I learned that the inhibitor drug, Keytruda, was already approved for melanoma and non-small cell lung cancer in the US. If PD1 expression, a biomarker of cancer, is high, Keytruda appears very effective.
Yet the side effects could be serious causing pneumonitis, holes in the intestine,etc, and in the worst case, the stimulated immune system may attack the healthy organs and tissues, which leads to death.
A Japanese lady, who has been on this drug in Germany, said her cervical cancer has shrunk dramatically with little side effects. Her case must be very successful, but I, who have seen a liver transplant patient, who had died because his immune system attacked himself, was intimidated and feel like I don’t mind if this trial is not available yet.
Every choice seems very risky with a slim chance. I have to trust the Lord and pray to lead me to the right therapy!