June, 2011

Radiation Is Over

The 28-day-radiation, started on 4/27, is finally over.

The night before, I had diarrhea again and all discomfort from a urinary tract infection, though I have had an antibiotic for a week, and then after midnight, as I took Tykerb, an antibody new medicine, I felt sick and had headache, backache, fever, and even cough.  Getting anxious, I made an appointment with a family doctor this morning.

Thankfully, the new antibiotic the doctor prescribed started working before I caught the shuttle (at 3pm) to go to have the last radiation. Whew!

As I got the shuttle, my friends who were already seated, welcomed me with a loud clapping of hands.  They knew that today was my last day of radiation and made me so happy with a big smile. 🙂

Even at the hospital, nurses at the radiation center greeted me saying,” Congratulations! Today is the last day for you.”

I thanked every one of them by shaking their hands tightly.

After the radiation, a doctor who examined me told that it was unknown if my cancer was responding to radiation, the lymphedema would get worse, or if my lungs and heart were harmed:  Doctors did pretty much everything they could do, and now I need to trust our Lord.

At least I know that my arm with lymphedema hasn’t changed the size yet, and my skin got dark, but it was neither pealing nor blistered in spite of my worry.

Not only that but my 28days of the trip was also surprisingly amusing because of the wonderful company.  Who in the world could imagine that there was such  glowing moments in the midst of  scary radiation therapy ?!

If I didn’t have cancer, I would’ve never met those people.  We, who were in different ethnicities, ages, and backgrounds, have laughed together and encouraged one another.  This was a taste of God’s Kingdom, and maybe Holy Spirit was with us in the shuttle…I wondered.

When the shuttle finally arrived at the terminal, instead of saying “See you tomorrow,” I said, “Thank you! May God cure you completely and bless you for many more years!” with big hugs to those wonderful friends.

I told George my emotional last day of radiation at home.  Then he took me  to a sushi restaurant to celebrate this accomplishment.

God is real; He is faithful,  and He is always with me just like George is with me all the time!  Gratitude!!

What’s Next?

George and I went to UCLA again to get an opinion from Dr. Glaspy regarding Tykerb, my new drug which has caused a skin rash.

Dr. Glaspy, who came into the exam room with his assistant, who has asked me prior questions, shook his head left and right and looked at me without a smile unusually.

What I need is TDM-1

If Tykerb is not for me, the next medicine is TDM-1. Yet This has not been officially permitted yet. It seems like that ‘s why he was not happy.

Reducing the dose from 5 to 2 tablets, I was hoping that my body would get used to this medicine. However, Dr. Glaspy scared me saying that if the rash was my body’s allergic reaction, the medicine might kill me before my body got used to it.

He said I should quit taking it once I get a rash again.

“TDM-1 is for someone like you. I wish I could give it to you right now.”said, the doctor.—(Yes! I wish, too!)

According to the doctor, UCLA will have a medical trial with TDM-1 sometime in the future, so he suggested I call every two months to check so that I can participate in it.
He also suggested for me to ask my oncologist to ask for a Compassionate Plea.

2nd option is Avastin

While TDM-1 is on its way, the medicine he recommended for me to use was Avastin.

This is an antibody drug like Herceptin, but a few months ago, I heard news that FDA would drop this medicine from the list of breast cancer drugs because this would cause more harm than benefit.

I asked about this, but the doctor believed the claim was exaggerated and the drug was effective. Side effects of concern are high blood pressure, clot formation, which could cause stroke or heart attack, and kidney failure, he said.

It sounds scary anyway!—I thought. However, the doctor also warned me that Herceptin alone won’t be able to prevent microscopic cancer cells in my body from growing.

After I got home, as I googled “Herceptin and Avastin”, I found the news below: A woman who had only two months to live because of breast cancer was cured by this combo under Dr. Glaspy.

My friend’s husband, who has been battling with brain cancer for two years, also has been taking Avastin and his tumor has been shrinking.

If I look for more positive cases with Avastin, I may be able to feel better.

Or I should think that even if such awful side effects happen to me, doctors may be able to use my case for future treatment for future patients.

Lord, you are the ultimate one that I can depend on. Please send me lots of courage to move forward!

Will I Wake Up?

The first rash appeared on the 10th day after I first started taking Tykerb, 5 tablets. I held off for three weeks and resumed it with 2 tablets, and then the rash appeared again on the 9th day followed by a week off.  It has been 12 days since I resumed it a second time and the rash has not come back yet.

At UCLA I was told that Tykerb might kill me if I was allergic to it, and was recommended TDM-1, a trial medicine, or Avastin ,a controversial medicine.

Today I discussed this issue with my oncologist and decided to continue Tykerb with 3 tablets instead of 2.

My oncologist, who is cautious about the usage of Avastin and wonders if  my insurance will cover TDM-1 because this is a trial medicine, will discuss  this issue with Dr. Glaspy, but as of now, she supported my optimistic opinion of Tykerb; I may not be allergic so I can increase the dosage.

However, for the worst scenario, such as an occurence of difficulty of breathing, she suggested I prepare four medicines and call 911 for the emergency.

Praying that nothing serious will happen, I will take Tykerb 3 tablets now.

May I be able to wake up tomorrow morning!!

I Woke Up!

After I took Tykerb 3 tabs, I went to bed with uncertainty.  Yet I could sleep without any trouble and could wake up today! I haven’t had a rash yet either.

If something happens because I increased the dosage of Tykerb, it may take a week or so, just like the first rash which broke out 10 days after I started taking the med.

However, as I drive, I can’t help praying that God protect me from the shock reaction and a car accident.

My oncologist notified me that she would refer me to an allergy specialist. I hope he/she can find out if I am allergic to Tykerb or not.

Trusting in God, but still being a little tense, I am going to take Tykerb, 3 tabs, tonight again.  May I be able to wake up tomorrow, too!

Hold Off Tykerb

Last night updating my blog, I wondered why I am taking a chance if a doctor can determine if I am allergic to Tykerb or not.  I e-mailed my oncologist, and then, though it was after 10 pm, she replied to me allowing to hold off Tykerb until I hear from a specialist, with a sidenote that  she was not sure if there was a skin test for Tykerb.

Although I initiated the question, once I was told to hold off the Tykerb, immediately I became nervous thinking ; ‘no.  If I hold if off, cancer may grow fast,’ and ‘a specialist may not really find out  if I am allergic to or not if there is no skin test.’

The appointment with an allergy specialist is next Thursday.

Vegetables and Fruits are Better Than Supplements

At night I went to a seminar of supplements sponsored by a hospital.  I was amazed to hear that antioxidant vitamins are not only beneficial but also sometimes they could be harmful.   A speaker said it would be much better to have a variety of vegetables and fruits instead of supplements in order to prevent cancer, although I thought I was doing so, and could not prevent cancer.

Being  afraid of cancer getting active, I was thinking of taking acai berry juice . I was holding it off  while I was taking radiation, but it is an antioxidant supplement.  I was discouraged to take it again.  Well, I guess I have to go back to my refuge-Jesus.

Father’s Day Again

Today was the 2nd Father’s Day since I got cancer.

Friday, George and I visited his father who is in an assistive living home about 90 minutes away from Torrance.  Today we, including children, expressed our appreciation to George having lunch together.

Though I miss my father in Japan, who passed last November, George opened the luncheon honoring my father, who had worked hard assuring that everyone would be well-taken care of financially.

Until I got to know George, holidays and birthdays were fun just because we could have day offs or have special foods.

Since I got married to him, however, I learned those days were important to make a family-bond strong: Not only because we eat cake or special food together, but also because we express how much we love him/her and how much he/she is precious for us through cards or direct words.

Even if we fill in our loved one’s daily needs, like packing lunches, doing laundry, or going out together, by expressing our affection in words, George taught me that those caring actions became truly meaningful and communicate our loving message.

It is also true that the more occasions I have to thank, the more I notice how much I am blessed.

As I appreciate how much he’s made my life rich, he always points to God, saying he is simply obeying our Heavenly Father.

Though I’m not sure how many more Father’s Days will come to celebrate, I want to make the most of this day to honor my father-in-law as well as George.

Clinical Drug T-DM1 : I’m Not Qualified

On the way to meet an Allergist, I got a phone call from my oncologist.

If I can’t use Tykerb, the first choice for the alternative was a clinical drug ,T-DM1, though, she explained to me that I was not qualified for this trial or for a Compassionate Plea  because I was not a metastatic patient .

T-DM1, called Super Herceptin,  is apparently  safer and more effective than existing Herceptin.  Yet unfortunately I can’t reach it yet.

On the other hand, the  Allergist told me that it would be possible to desensitize allergy of Tykerb, even if I was allergic to it.  According to her, Anaphylactic shock usually happens in a few hours after the intake of a drug, so Tykerb, which hasn’t caused such a reaction yet, doesn’t seem like it will kill me.

While T-DM1 has been crossed out, this is very good news!

Asking her to check if there was a skin test for Tykerb, I left the office.

It has been almost three months since a biopsy found new cancer in my armpit.  Though the 3rd regimen has been staggered because of the side effect, rashes, I hope I can find the way to break this wall soon and continue the battle.

Caring Doctors

The allergist called me so promptly informing me that there was no skin test available for Tykerb.

The oncologist was also sending me a cue through email to resume tykerb.

Though whether  I am allergic to Tykerb or not is still unknown, at least I don’t have to worry about anaphylactic shock now.  I will take 2 tablets for 2 weeks again, hoping my body gets used to it and I will be able to take a higher dose.   However if this strategy doesn’t work, I have to give up Tykerb.

Looking through online, I noticed there were many clinical trials with T-DM1 and not everything was limiting participants as  metastatic patients.  If I look patiently, I might find a trial that allows me to participate somewhere.  In fact, Dr. Glaspy told me to check UCLA trials every two months.

My oncologist at Kaiser told me that she has made a connection with Dr. Glaspy.  According to George, it is rare that doctors at different hospitals collaborate, and he told me how blessed I was.

Maybe it’s because my cancer is so unique, but I feel sincere care from each doctor I meet. Especially with my primary doctor, the oncologist, she is so closely watching me that it was as though I were running with her in a three-legged race. This is so encouraging and I am deeply thankful.

As God is taking care of me sending me such good doctors,  I have to do my best for my part in this battle.