Metastasis

He Raised Me Up

Consultation with  Pulmonary Doctor

Kaiser squeezed me into a pulmonary appointment yesterday.

After taking a lot of time to observe my scan’s images, the doctor turned the computer in front of me and explained about the result of the PET/CT scan.

“ This is the sternum and here is a lymph node.”

At the center of the CT image, which was looked at from the head and sliced horizontally, was the sternum and the right front of the sternum was a white dot.

Then he showed me the image of PET scan and pointed that the same location as the lymph node was highly dense.

According to him the suspicious area is not the lungs but the fist-sized lymph nodes around my sternum.

“Some images indicate cancer clearly, but some don’t.  They could be anything.  That’s why we need biopsy.”

Listening to how the doctor explained about the result, I felt my tension was relieved gradually.

Biopsy Will Be On the 9th

The doctor also explained to me how the biopsy would be done.

It is called bronchoscopy, which gets a sample of my suspicious lymph nodes by a tube with a  camera inserted from the mouth.

With local anesthesia and sedative I won’t feel any discomfort according to the doctor.

But I have to fast 12 hours prior to the procedure.

I must not fail this time!

Rushing in  Dental Treatment and More Appointments

Dr. Glaspy also replied to me saying I would need to go back to chemotherapy in stead of the antibody therapy I am doing now – if metastasis has occurred.

If so, my immune system will get weak again, and then I cannot have teeth treatment.

I have to fix my teeth before I start new chemo.

I asked the dentist if she can fix my teeth ASAP; she accepted my urgent request and started the treatment spending 4 hours straight without even taking lunch break.

I made an appointment with the pulmonary doctor to hear the result of biopsy on the 13th and with Dr. Glaspy at UCLA on the 18th.

 

“ No matter how ferocious cancer is, God is bigger than cancer and He is still on the throne.”

Receiving lots of encouragements and prayers, I started receiving strength.

Sensing the Holy Spirit and Jesus are with me, I am being raised up!

Thank you everyone!

 

 

 

 

Cancer Got Out Of The Bay

It was on the 9th that I had a bronchoscopy biopsy, and the oncologist called regarding the result last evening.

Positive — Three cancers were found.

I thought cancerous nodules were found  in mediastinal lymph nodes, but the biopsy report I received today said “Lung” core biopsies.

Lymph nodes or /and the lung, either way, this is really discouraging news.

My previous PET scan was in December and just four months after, cancer has grown into three!

The grade, which shows aggressiveness, was 3+, which means the most aggressive.

The cancer finally broke the fort and moved out of the bay in spite of two years of the treatments.

The sub doctor recommended me T-DM1 as the next med, which is a clinical trial med called a “Super Herceptin” : It is supposed to be much more effective than regular Herceptin, which I have been on.

Last time when I had a trouble with skin rash caused by Tykerb and not sure if the medicine was compatible with me or not, Dr. Glaspy actually recommended T-DM1.  Yet that time I was disqualified from the protocols.

May I be candidate this time?

Or even if I am, what if T-DM1 fails, also?

I knew the biopsy result would be positive, but the word “Metastasis” on the report brought me new fear.

Then George said,

“ Don’t look at the storm.  Jesus said many times in the Bible ‘Fear Not!’ we have to walk trusting in Him.  I am with you all the way.”

At the church people put their hands on me and prayed for me.

Cancer is frightening me, but our God is bigger than cancer and He is on the throne!

Whether I live or die, my life is in His hand and the word of God, the Bible, is in my hand.

I can’t surrender, but have to live well until the end!

 

 

 

A Shaken Rough Week

Disappointing Visit to UCLA

Since the biopsy proved my metastasis is in my lung, the game has changed drastically.

Hoping to find the way out, I visited UCLA for a 2nd opinion, but it turned out to be a disappointment.

“ If I had T-DM1, I would give it to you right now, but you are not qualified (for the clinical trial) because you have taken Tykerb.  You have to go back to (conventional) chemotherapy.  How about Avastin?” said the doctor.

“ Avastin was removed from the list of breast cancer drugs.”  As George answered so, the doctor didn’t mention any more about Avastin but recommended Gemcitabine.

“ You may not know if you can beat the cancer, and then you don’t want hard chemo,” said the doctor.  Gemcitabine’s side effect seems mild.

“There is a woman who has suppressed  metastatic cancer spread into her lungs by Herceptin, Tykerb and Paclitaxel though, how about Paclitaxel?”, I asked.

“That’s fine, but it’s going to be harsh.”

He recommended to me Gemcitabine for 6 weeks, and if it doesn’t work, to try other chemos since I haven’t tried many yet.

I left the office with the impression that there was nothing special to help without T-DM1.

 Huge Pressure

At night I saw an image that I was standing on the ragged edge and could not sleep.

Did my father, who was transferred from a nursing home to a nursing hospital, ever feel this fear?

Did organ transplant patients, who were on ECMO, a heart-lung machine, waiting for  new hearts with uncertainty also live every day with such huge pressure?

I got up many times and tried to open the Bible, but could not focus.

I only prayed.

 The Lord is with Me

If T-DM1 is the only medicine that gives me hope, George said that getting me T-DM1 is now his quest, and he sent e-mails to friends and family members for help.

 

Then I received a long encouraging e-mail from Annie, who is in her 70’s,  has gone through so many trials in her life, lives alone in a small cabin in the mountains, but is so compassionate that she runs a quilt NPO to support disabled and cancer patients.

She said,

“It feels fearful because it feels like a journey we have to make to a place we don’t know and all by ourselves.  But that is not true, for God will hold onto us and be with us every step of the way.  He IS our shepherd, and he leads us besides still waters.  He makes us lie down to rest.

Live each day with the thought that it could be the last day, so that will help you do the things that are important in life.  Mend any fences that need mending. Tell everyone every single day that you love them.  Pour your energy into random acts of kindness wherever you go.  It is these seeds that renew your life energy and keep it alive….”

 

The LORD is my shepherd, I lack nothing.

He makes me lie down in green pastures,

He leads me beside quiet waters,

He refreshes my soul.

He guides me along the right paths 
for his name’s sake.

Even though I walk 
through the darkest valley,

I will fear no evil, 
for you are with me;

your rod and your staff, 
they comfort me.

You prepare a table before me 
in the presence of my enemies.

You anoint my head with oil; 
my cup overflows.

Surely your goodness and love will follow me 
 all the days of my life,

and I will dwell in the house of the LORD forever.

 

Psalm 23 was written by David ,who became the king of Israel later, when he was hiding from cave to cave, his life being threatened.

Sensing God is filling my spirit with love and encouragement in this uncertain dimness, I will have a new week.

Spirit Is In The First Gear and Ready For Adventure

The Power of the Bible

Every Tuesday is the Bible class.

We have learned about the Old Testament with George as a teacher.

The Old Testament consists of 39 books written by various people during  1400B.C. to 400 B.C.

Starting from Genesis, including a story of the first human beings, Adam & Eve, it tells the history of  Israel and God including poems, stories, laws, and prophecies from God to Israel.

As I read the Bible, I feel the deep unfailing love of God, who comes to rescue us from the wilderness in spite of our sins; we want to go our own way departing from Him.

When the class was over, I was so inspired that I felt like God ignited a fire inside of me and the great power surged.  It was so great that I even thought that I was cured in that moment!

Since then, in spite of unknowing what the next regimen and when to start, and being busy making many phone calls and e-mailing with the doctors, I have had peace.

My life is not depending on medicines, but on God, who created heavens and earth,  and loves me dearly.

He raised me up again after I was knocked down by the bad news last week.

The Bible is so powerful!  If I am connected with God, I have no fear but rather peace and joy.

 Adventure of Amtrak

George and I were supposed to leave for Santa Barbara today for a wedding.  Yet, an appointment with an oncologist was made after 4pm tomorrow.

George will leave tomorrow morning to conduct the rehearsal, and I decided to catch up to him by Amtrak.

Although I have lived in LA for more than 20 years, I haven’t ridden on Amtrak yet.

This is the first time and I will travel all alone at night!

It is exciting!

GOD IS GOOD ALL THE TIME!

Could Be Eligible for T-DM1 Trial

The trip on Amtrak didn’t disappoint me and I had good time with George in Santa Barbara last weekend.

George @ Santa Barbara Mission


Yet, before the trip, I had a clinic with my new oncologist.

New Doctor

It was too bad that I found out the metastasis right after my primary oncologist went on her maternity leave.  With the sub, I had a difficult time to communicate with and even to refill my medicine.

I lost trust in him quickly, however the hospital gave me a hard time to change the doctor.

After many phone calls and e-mailings, finally I could make an appointment with a new oncologist.

She looks young, almost like my son’s age, but is knowledgeable, answering my questions one after another.

Clinical Trial @ Kaiser

According to her, Kaiser has a T-DM1 clinical trial, which I have been desperately looking for.

She said maybe I would be eligible.

A clinical trial is an exam that tests how effective a new medicine or treatment is.

Therefore, the trial has two arms with a T-DM1 group and a non T-DM1 group to compare the results.

Even if I am qualified for the trial, my chance to get T-DM1 is 50%.

Next Chemo

If I am not qualified for this trial or if I won’t be in T-DM1 group, I have to be on  conventional chemo.  The doctor and I discussed the choice of next chemo including the 2nd opinion from UCLA.

After all, we decided to add Paclitaxel to Herceptin and Tykerb, two antibody drugs I have been on since last April in 2011.

Although Paclitaxel is in the same family with Taxotele, which I tried in the first regimen in 2010,  they are a little different, and there is a 20%  chance to work on women who failed with Taxotele.

I have to wait for a few more days to know about my eligibility for T-DM1 and have to take more scan tests to see if there are more metastasis in my body.

The tension will continue, but  I appreciate so many people who have sent me so much information as well as encouragements.

I don’t deserve for this and this is truly God’s grace.

I am blessed.

 

The Gamble of The Clinical Trial

My new oncologist has referred me to Bellflower Kaiser, where the T-DM1 Clinical Trial is being performed.

I have to have an evaluation to get a ticket for the clinical trial and if I pass the evaluation, I have to stop the medicines I am taking two weeks prior to starting the trial. While waiting for the evaluation, I can’t start any new medicine because it will affect the evaluation.

I had a whole body CT and bone CT scan Friday and today to detect more cancer, which the PET couldn’t detect.  (PET can detect only 1cm or bigger tumors.)

It has been already a month since the PET/CT found cancer in my lung, and although cancer could be growing every day, a process of a clinical trial is long and slow.

Even if I am accepted in the trial, there is no guaranty of T-DM1, and even if I can get T-DM1, there is no guaranty of success.

Should I forget T-DM1 and start with conventional chemo right away?

I don’t know which way to go, and then George said,

“ Several doctors recommended you T-DM1 and this is the chance for you to get it.  I understand you are scared, but don’t be ruled by the fear.  Let’s pray.”

So we prayed for God’s wisdom to make a good decision.

Next day, the phone came from the hospital:

My appointment of the evaluation was moved up from 5/4 to 4/30.

I am in the biggest gamble of my life with so many unknown factors.

 

 

 

 

 

Disqualified For T-DM1

I went to Bellflower Kaiser today for the evaluation for the T-DM1 clinical trial.  The doctor  was going to send me for an interview, yet, as I said I was disqualified from Cedars Sinai’s clinical trial because I hadn’t tried two  drugs in the protocol, he said the Kaiser’s trial had the same protocol.  Even before starting the interview, it became clear that I was disqualified.

According to the doctor, the T-DM1 clinical trial had finished Phase lll and the current trial is just an addition to give women more chance for T-DM1.  It is almost ready to come out.  He is not sure when, but hopefully it will be sometime soon!

Since I am disqualified, I am going to use Paclitaxel with current Herceptin and Tykerb starting this Wednesday.  It is disappointing that I was disqualified for T-DM1, but I am glad that I can start a new treatment without wasting more precious time. (My chest is hurting now and I am afraid that cancer is progressing.)

Paclitaxel will give me 20% of a chance to shrink cancer.  I will lose hair and my immune system will become weak, again, but hopefully I can handle all those side-effects.  May God give me strength and bring me a miracle!

The first week of Taxol

I started the 4th regimen last Wednesday adding a new chemo, Paclitaxtel to Herceptin and Tykerb.  I will receive Paclitaxtel once a week for 3 weeks, and 1 week off.

In spite of a doctor’s concern that the combining Paclitaxtel with Tykerb may cause harsh side-effects, I am controlling diarrhea and with a 2-3 hour long nap, I started off pretty well without fatigue, nausea, or taste change.

As I have heard a common side effect of Paclitaxtel would be numbness and tingling of fingers and toes, I prepared Vitamin B complex.

I took out a wig from a closet again but probably it will take a few more weeks to need it.

The additional CT I took found two more cancers in my lymph nodes and right lower lung robe and that was discouraging.

Yet, since Wednesday I haven’t had shooting pain on my chest, which started a few days before the infusion.

Instead of waiting for three months for the next CT scan, which is a standard, I requested to have it in two months so that if this new chemo is not effective, I can switch to next chemo quickly.

I decided to insert a port for the infusion, also.

I have only one arm for infusions or blood withdrawing, but now I have to do so every week and nurses have hard times to find a good vein because mine are thin.

It seems like there is little risk of infection, no concern about bathing, and it won’t hurt veins any more.

May I have peace and be able to enjoy each day until the next CT scan!

 

 

Cancer Is Stable

The email I was longing for came from the oncologist with the result of the CT scan I had last week. It said briefly “ stable,” and suggested that we would discuss details at the next office visit, which is this Friday.

Honestly, I was disappointed, as I had hoped for more shrinkage.  Yet, it could have been worse with growing cancer.  I have to be thankful for this result.

As I read other cancer blogs, there are some people who stay on the same cocktails for many months being stable with cancer, which doesn’t go away.  Yet I feel like the cocktail I had lost effect compared with two months ago, and even if I continue to stay on the same, I don’t think that the effectiveness will come back.  It may be the time to change the cocktail, which I was thinking of anyway because of advanced side effects.

I have read that weekly Abraxane, the new form of Taxol bound with albumin, has less side effects and more effect on cancer in some articles as well as some blogs in which the patients said that their metastatic cancer was gone by Abraxane only.

If Perjeta (Pertuzamab) is really available for me, I probably need it now.

In order to prepare for the meeting with the oncologist this Friday, I requested the copy of the CT scan report.   It is the time for a second opinion, also.

My life is God’s hand.  May He lead me to the right next step!

No Evidence of Disease!

Opening the door of an exam room, Dr. Lou, the oncologist, came in saying,” So it was stable. It was good news,” with a smile.

“ Yeah, I am glad that cancer was not growing, but I expected more shrinkage.” I replied.

“Well, all cancer found around the mediastinal area are gone.  So it is really good news,” said the doctor.

“ Are they gone?” Being surprised, I looked at the report in a computer together with her.

She read aloud the first line of the report:“ No significant mediastinal and hilar adenopathy (=cancer).”  I had thought that  “the no significant” was the change of cancer. I had misunderstood it! I blamed the report that should have been written with the words, something more clearly understood like “ improved” or “ not seen”, but certainly I felt better as I noticed the mistake. Pulling out the old reports in 2010 before the metastasis, the doctor also explained that other nodules described on the report could be benign as they have been seen from the beginning, and haven’t changed their sizes.

“ At least the visible cancer is gone and you have no evidence of disease now,” said the doctor.

Yay! Taxol was still doing its job, instead of losing the effect!

 New Drug Perjeta

I can’t expect any better than this news, but I have to continue the treatment because there must be still lots of invisible cancerous cells which have the stem cells that cause metastasis and relapse. I have to stay on this status of NO Evidence of Disease as long as possible.

At the beginning the doctor recommended that I should stay on the current cocktail at least for two more months, but I asked for the possibility of the new drug, Perjeta, which was approved by FDA in June this year for only newly diagnosed metastatic patients with the combination of Herceptin & Taxotere.

First she made clear that this condition would not be a problem for me because my insurance was provided from the same Kaiser system as the hospital, instead of the outside ones, as long as doctors can prove the usage is reasonable, safe, and effective.  If cocktails are supported by clinical trials for their safeties and effectiveness, they are allowed to be used.  As Perjeta is a new drug, the compatibility with other drugs is mostly unknown, but fortunately Taxol is one of a few drugs the clinical trial has shown the data.

“ It is the question of whether you want to use this card, Perjeta, now or later,” said the doctor.

I understand that all drugs are effective only for a limited time and eventually lose the power.  If I use it now, I will not be able to use it in the future.  Yet, I explained that I’d rather use it now and beat cancer as much as possible before it comes back, by switching it with Tykerb that failed to prevent the metastasis.

“You are aggressive, but I understand what you mean.   Let’s check if the pharmacy has the drug or not, and if they have it now, let’s start it today,” saying so, the doctor left the room.

I appreciated her spending time, already more than an hour with me, showing great understanding.

After all, as the pharmacy didn’t have the medicine, the doctor decided to start giving me this new medicine, Perjeta in three weeks. Meanwhile I will clear Tykerb out from my body stopping it tonight. I will be finally relieved from diarrhea!

“Trusting that He will make all things right

If I surrender to His will.”—from Serenity Prayer by Rheinhold Niehuhr.

The Lord moved a big mountain and made a path for me. God is good all the time!

 

In the Short Days of Autumn

After the long summer break, schools became busy again and September passed so fast.  Although the side effects haven’t changed, making various new commitments, I am getting active, also .

Listening to George’s sermon; “ Start a day with the Lord”, I now get up at 6 o’ clock in the morning and begin the  day with a prayer and reading the Bible. God’s words slowly but surely permeate me just like coffee beans become  fragrant coffee through a filter.

If I get near-sighted with cancer, which may never go away and can come back any time, as well as the treatments, which may never end and bring numerous side effects, I would be easily overwhelmed.  Yet in front of such an enemy, the Bible always gives me courage, hope, peace and even joy each time I open it.

 Reunion

A Japanese girl who had a heart transplant at UCLA Medical Center 12 years ago at age 9, arrived in L.A. again recently, this time to study English.  Yet as she ran a fever, she visited Dr. Kobshigawa, a worldly known cardiovascular specialist, who treated many heart transplant patients from Japan.  In order to help their communication, I reunited with her after 12 years and with Dr. Kobashigawa after 3 years.

Dr. Kobashigawa hasn’t changed at all.  Taking a few seconds to recognize me, who was wearing a wig, he reached out to shake my hand with a big smile.  Listening to the girl’s heart, he said it was strong and there was no need to worry.  He looked very happy to see the girl who has grown up into a healthy adult because of the heart transplant.

Reuniting with them, I  re-appreciated the extraordinary experience of volunteering for the international organ transplant patients, and was happy, too.

“ Whoever wants to be a leader among you must be your servant, and whoever wants to be first must be the slave of all. For even I, the Son of Man, came here not be served but to serve others, and to give my life as a ransom for many,”  (Mark 10:43-45) says the Bible.

The ministry of the organ transplant was not a job with compensation, but it is now clear that God called me to serve the international patients and I am so glad that I could respond to Him by volunteering.   By answering my prayers, He is also giving me multiple opportunities to serve in His kingdom again now.

The days of autumn are short and fly fast, but my days are getting productive again, feeling the intimacy with God just like with my beloved family.

 

Looking Forward to Family Trip

The runny nose that I thought finally stopped in summer returned dripping constantly.  As I blow my nose repeatedly, soon I see blood on a tissue.

Since I added Taxol into my regimen, I lost not only hair but also eye brows and eye lashes.  Under my eyes dark patches were developed and now my nose is red and burning.  Pointing to my face like an alien in a mirror, I sang “ Rudolph The Red- Nosed Reindeer.

Last Friday evening and all day Saturday, I was just sleeping,  feeling so lethargic.  My legs are always heavy, weak, and stiff.  Everything is the side effect of Taxol.

I made a plan for a family trip to Idyllwild in the San Jacinto Mountains, which is about a 2.5 hour drive from our house, from this Thursday to celebrate my 3rd birthday since I got cancer, but facing numerous side effects, I was not sure if I could make it.

Idyllwild from California Weekend Gataways

Yesterday at a Ukulele concert at the church, at the beginning I felt so sluggish again – even smiling seemed to be hard work.  Yet, surprisingly while I was singing songs along with the Ukulele group, I slowly gained strength, and by the end of the concert, I was singing at the top of my lungs and  felt so good!

Though I have an infusion on Wednesday, the day before our trip, fortunately this week will be off Taxol and only Herceptin.  My side effects should be minimum.   I don’t know about hiking (there are numerous trails) but at least I will be able to  enjoy cooking at the big nice kitchen at the vacation rental.

I am concerned about the result of the next CT scan, which is scheduled on 10/25, as well, but I decided not to think about it until I get back from the vacation on Monday.   In the beautiful nature, I will enjoy God’s creation with my beloved family!  I am excited!

 

 

 

CT Found Suspicious Density

I received a report of the CT scan I had on the 25th.  Most of the parts are stable except one new finding in the mediastinum lymph nodes–12mm soft tissue density.  The report said this is “suspicious for lymphadenopathy”.  In another words, it may be cancer.

After the previous CT scan in Aug., I stopped Tykerb for three weeks planning to change into Perjeta, a brand new drug.  I wonder if that allowed cancer to grow again.  The result was discouraging;  as I had seen  data that Taxol could be effective for 6 to 12 months, I expected the same even in my case.

I recalled the doctor’s words: “I’ve never seen such a resilient cancer.”

My oncologist said she would discuss with a radiology specialist who wrote the report and explain it to me on this Friday when I visit her.

Today I resumed the infusion that was held off for a week due to the fever and received the refill of Tykerb as well.  Yet probably I have to change the regimen again soon.

 George’s Surgery

George will have the 3rd surgery to fix his vocal cords tomorrow Thursday, after the ESL Bible study.  He had this procedure already twice this year, but his voice has become raspy again.  He will be injected with a substance to close his paralyzed vocal cords without opening the throat.  The procedure should be simple, quick, as well as the recovery.  Yet I cannot help praying for him.  I hope he can get back the voice and reduce some stress.

“Whenever trouble comes your way, let it be an opportunity for joy.   For when your faith is tested, your endurance has a chance to grow.  So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything.” (The letter of James 1: 2-4)

Opening the Bible, I meditate on the words of James.

Jesus came to the earth two thousand years ago and told that the kingdom of God was near.  He declared war against Satan who was responsible for all afflictions and calamities including death and diseases.   The spiritual war has not been over yet but He will get the victory and complete the Kingdom— I just learned in the Bible class.

The more we are needy, the closer Jesus is to us!

Recalling His gentle face, I prayed for the success of tomorrow’s surgery and that peace, hope, and strength would be restored in us quickly again.

 

 

 

Meeting Dr. Slamon, Father of Herceptin

I could finally meet Dr. Slamon, who helped develop Herceptin, after almost two months trying to make an appointment with him.

As he has been my hero since I saw “ Living Proof” , a movie about him and his struggles of making Herceptin available,  I was excited to meet him.  Yet when he walked into an exam room and offered his hand to shake, I felt so humbled thinking that this was the man who saved so many women by revolutionizing the treatment of breast cancer.

Looking at the latest result of CT scan, he started off saying that cancer might be activated.  My purpose of visiting him was to get his opinion for the next regimen concerning the same, but hearing the statement from him made me realize the seriousness.

Our conversation began supposing that the suspicious lymphadenopathy was cancer, and he suggested as follows:

1)   Take another CT scan soon, not waiting until the end of December.

2)   Stop Taxol, which has caused so many side effects, and try Xeloda because the side effects could become much worse even with a less dose and then the recovery may be difficult.

3)   If cancer is active again, get TDM-1 as soon as possible.  ( I have read that  FDA might approve it on 2/28/2013)

4)   While waiting for T-DM1, the recommended regimen is Perjeta, a new drug approved in June 2012, +Herceptin + Xeloda.

5)   If cancer is stable, try Herceptin+Tykerb+Xeloda as long as it ‘s effective.

6)   Clinical trials of vaccine haven’t shown any good results yet, but the research about IL6, a protein that causes cancer’s resistance against Herceptin may be a breakthrough.  Keep an  eye on those clinical trials.

I got nervous as I learned that Dr. Slamon was seriously concerned with my side effects, but it also requires courage to drop Taxol, which was the first effective drug for me and could be still working, and to change to the new drug, which may not work on me.   I wondered if I had to look for clinical trials of T-DM1 again, though I thought I could wait for its approval until next year.

I e-mailed my oncologist informing her of the 2nd opinion of Dr. Slamon.  I was leaning on the optimistic assumption that the suspicious lymphadenopathy was due to a bad cold and I could enjoy this Christmas season until next CT scan which was supposed to be at the end of December.  The roller coaster may be moving again, but I was  thankful that I could meet Dr. Slamon to get his opinion.


The movie was produced in 2008.

Starting Xeloda

About a half month after I stopped Taxol with a week delay due to the food poisoning, I started a new chemo, Xeloda at night on the 19th.

I started with 5 pills (3 in the morning and 2 in the afternoon)in stead of 6,  watching out for diarrhea.   Yet the next morning, I woke up with a stomach pain and had to go to the bathroom.  On Thursday we would have a Christmas luncheon in the ESL Bible class, and as I didn’t want to ruin the fun time with diarrhea, I immediately took an anti-diarrhea medicine.

It was a wise choice.    All day long I was fine and enjoyed every part of the luncheon.  I realized it was important to take  medicine when a problem is minor, instead of bearing it until discomfort or pain become serious.

Besides diarrhea, I was told that Xeloda may cause hand-foot syndrome, which make sores, pealing, or breaks in the skin.  Thursday morning, I found a small cut on the tip of my right middle finger.  At the beginning days of using Tykerb, I experienced cuts and breaks in the skin of fingers and soles, as well, but they were healed by ointments, socks, and gloves.  The beginning of this year I had to have a surgery for a granuloma and although it reoccurred, it disappeared by applying aloe gel. So, I am going to try aloe and Aquaphor ointment to prevent this problem.

As of day 4 of Xeloda, diarrhea is under control and so far no major problems except this small cut.

On the other hand, since I quit Taxol, my baldhead became itchy.  I guess my hair is coming back, or that’s what I hope since I want some good news.

Dr. Slamon suggested to stop Taxol, being concerned that the peripheral neuropathy would become permanent.  The numbness, tingling, and stiffness of my legs haven’t changed yet, but psychologically I am relieved thinking that I am not taking Taxol any more.

Next CT scan I’ve been anxious about was rescheduled for the 28th of this month, although I wanted to move it up.

If I think about it, I get worried, but so far, the Christmas spirit is holding it down.

In spite of many more trials this year, I am thankful that I have been enjoying Thanksgiving and this beautiful Christmas season.

I love Jesus!

Neighborhood Church Christmas Pageant

What Is Causing Pain?

As I stretch my left arm to pick up something on the floor, a sharp shooting pain runs through my chest from the upper left end of my ribs and then the pain goes away as I change my posture.

Also, as I open my left arm towards the outside to stretch, a different pain, like thin ice, is cracking and runs through the chest.

Yet, the worst pain I have ever had has been attacking me during the night for the last several days. Fortunately Tylenol is helpful and I can sleep, but the intensity of the pain has been escalating.

A cancer friend, Dr. M told me that the level of ALP (Alkaline Phosphatase), an enzyme in the blood, goes up if cancer spreads into bones.  So I asked my oncologist to check this marker.

The result of the level, as well as the levels in the past, were normal.

The doctor also added that the latest CT scan showed no sign of a bone abnormality around the area I complained.

I am thankful for the information which denies cancer, but the pain is so intense that I cannot wipe out all doubt of metastasis in the bones yet.

If this is not cancer, then what is it?  Is it neuropathy, arthritis, lymphedema, after-effects of the radiation, or did I stretch my arm too much?

I am waiting for the result of the x-ray. ;-(

 

 

Cancer Progressed Again

Today was the 7th Cycle of Herceptin and Perjeta.  Sitting in a chemo chair, I asked a nurse, who was opening my medical record in a computer, if the CT result I took last week had arrived already or not.   She said, “ Yes, “ so I asked her for a copy of the result.  A nurse is not allowed to explain a result, but she can certainly make a copy.

In the three-page result, I started reading the last page where the impression was written.

  1. Stable 9mm right lower lobe nodular opacity.
  2. Scarring and volume lose at the posterior left lung apex likely represents sequela of postradiation change.
  3. Interval increase in size of aortopulmonic lymph nodes.
  4. ….
  5. ….
  6. ….

 Cancer woke up!  At least 6 lymph nodes around the lungs have been growing.

The 5mm lesion in the liver was improved and besides the same possible abdominal varices just like the last finding in March, other organs and bones showed no remarkable changes.  –Those are all relief for me.

I will see the oncologist next Wednesday and hear more about the result.  Yet I am sure that my remission is over.  For the last two years, I was hoping that I was cancer-free, but instead, cancer was just sleeping and now it’s awake and active again, I guess.

I changed to the current regimen in January 2014 due to some side-effects of T-DM1.  I knew that although Perjeta was an excellent drug, without an additional chemo drug, a combination of two antibody drugs (Herceptin and Perjeta) works less than 20%, but  I chose the regimen because I wanted to rest my body from all side effects. Now I have to change the regimen again quickly.  I feel like I had a fall and have to climb up all over again a giant steep mountain, which I thought I saw the top almost.

May the Lord lead me to the right medicines and to the miracle again!

Taxol Again, but Liver Biopsy First

The oncologist and I discussed about the new regimen and decided to add Taxol, which shrunk metastasized cancer completely two years ago, to the current regimen, Herceptin and Perjeta.

I will lose hair, which finally became long enough, again, and am concerned with the peripheral neuropathy, which has worsened since I first used Taxol.  Yet, shrinking cancer is the priority and I am betting on this drug.

Once I decided the regimen, I wish to start it ASAP.  However, instead of a chemo nurse, the diagnostic imaging center called me telling I had to take a liver biopsy first.  The last two CTs showed possible varices.  Because an EGD (Esophagus stomach camera procedure) was negative, I held off the biopsy but the GI doctor told me this is important for me. That means I have to wait for the new regimen until 6/30.  If I think that cancer has been active since March, I get upset and crazy.  Instead of watching the storm, I have to say to myself, “ Focus on Jesus.  He is in the same boat with you!”

Perjeta Making Remarkable Survival Record

The survival time of Perjeta, a new drug approved in the usage with Herceptin and chemo drug by FDA for advanced HER2 breast cancer two years go, has made the longest record of survival time.
According to the news I read yesterday, the Europe Society of Medical Oncology informed that in a median of survival time, a group of Perjeta+Herceptin +Taxotere showed 16 months longer than a control group with Herceptin+ Taxoyere+ placebo.
I didn’t know, but usually a good drug means improving only a few months of survival time, and because this is so, this result is unprecedented, said the news.
As Perjeta is still pretty new, there were not enough dates to know how long the patients could survive, but excitingly the specialists expect Perjeta will keep renewing the record.
In another data, Perjeta has knocked down the death rate to 32% less than the control group.
Even regarding side effects, though Herceptin, a profoundly essential drug for HER2 positive breast cancer, can affect the heart function, with Perjeta, somehow this side effect was seen less.
So much good news of Perjeta!

In my case, in which cancer became reactive soon after I changed the regimen from T-DM1( Kadcyla) to this Perjeta combo, I am not sure if Perjeta is compatible with my cancer or not, but I hope and pray that adding Taxol, which took me into the remission two years ago, a synergetic effect is happening.

Need More Bullets

A CT result I took last week came back. It said that cancer in the lungs has progressed mildly and indicated that Xeloda as a second round was not working like the first round. I should change the regimen again, but the problem is that my options of chemo are now running out.

My oncologist can think of only two, T-DM1 (Kadcyla ) and Gemzer.

T-DM1 is a so-called dream medicine I longed for two years ago, and I was on it for 8 months. I stopped it following an opinion of Dr. Slamon, who invented Herceptin, as he was concerned about the spiking liver enzymes. That time, he told me that I could use T-DM1 again in the future because I would stop it due to not the progression of disease but the side effect. Yet, since Xeloda as well as Taxol, the previous chemo, didn’t work like the first round, though they were used in the different regimens, I am afraid that T-DM1 may also fail in the 2nd round.

Gemzer is a medicine, which was recommended by UCLA Medical Center when I received the metastatic diagnoses in 2012. In the end I chose Taxol instead of Gemzer; this is the only chemo I haven’t tried yet. However, my oncologist told me that her patients have not been doing well with this chemo because a side effect, an effect on the white cell count, is nasty.

The oncologist will consult with other doctors for my next step, but meanwhile, I thought I should ask Dr. Slamon, a prominent doctor, again if he can give me some creative options, so I called to make an appointment with him.

I hope there are some medical trials, which are available for me, or even considering Dendritic vaccine, which was not approved by the FDA yet, available in the Cayman Islands.

Because of the bad report of the CT and the fact that I am running out the medicines, my spirit was knocked down, so I opened the Bible and spent time reading it for two hours.
“ You belong to Christ Jesus,” “ God will keep you strong to the end.”

Being encouraged, I went to the Bible study at night carrying many roses to share the thanks of the 5 year survival with each person who came to the study.