It’s Time for CT Scan Again

Since my last CT scan came back with a good result, in spite of endless side effects, which send me to a couch to lie down often, I have been enjoying this summer.

Now it’s time to have a CT again.

Is my cancer gone? I wonder.

I have learned Taxol usually works well for 2-6 months, and  as I’ve been on Taxol  for 4 months, it’s still possible to have another good result.

Three weeks ago, when I talked with my oncologist, who came back from her maternity leave, she recommended I stay on the current cocktail for another two months if this coming CT result is good, and then change to Perjeta(Pertuzumab), a new drug approved by the FDA in June.

Though Perjeta is in the shadow of T-DM1, this antibody drug also has showed outstanding results in the clinical trials.  As it was approved with the condition that this is only for the patients who have not started any metastatic treatments and only with Herceptin and Taxotere, I thought I was not able to reach this drug, but surprisingly the doctor talked about this medicine as my next choice as if there were no barrier.

We didn’t discuss about the case of the bad result, but regardless of the result, I am thinking of changing from Tykerb to Perjeta soon if it’s really possible to use it, since my side effects are getting nastier and increasing.

Nobody except God knows if Perjeta will be effective on my cancer or will ease my side effects, and if the CT’s result is bad, I will go into another big storm.

Yet, my life is in God’s hand!  Believing so, I will go to take the CT scan tomorrow.

Should I Change The Course?

I wanted to switch from Tykerb to a brand new medicine, Perjeta (Pertuzumab), which was approved in June this year, but I wondered what side effects I would face.

I asked nurses the question at the chemo station, but nobody knew about this new medicine yet. Am I going to be the first patient at the clinic if I use it?

I also Googled the question on the internet, but most of the information was regarding Perjeta + Herceptin+ Taxotere, which was the only way the FDA approved it.  Since the regimen of Perjeta and Taxol I am interested in is still in the process of a trial, there are not many datas yet but finally I found a person who experienced this combo with T-DM1.  Surprisingly she was a survivor from the 56th floor of one of 911 twin towers.

Jun. 2010- She was diagnosed with liver metastasized breast cancer as ER-,PR+, & HER2+.

Jan. 2011- No Evidence of Disease (NED)

Apr. 2011-Dropped Taxol due to the cancer progression in the liver

May 2011- Started Herceptin+ Xeloda+ Tykerb

Nov. 2011- Progression in Liver

Dec. 2011- Started a clinical trial of T-DM1+ Perjeta + Taxol

Jan. 2012- NED!

Mar. 2012- Dropped Taxol

As of now she keeps NED with T-DM1& Perjeta.

According to her, while she was using Taxol with T-DM1 & Perjeta, she began to experience peripheral neuropathy. On top of that she almost lost her eyesight as her optic nerve was also damaged.  Also she developed an intestinal aneurysm due to blood clots and as she used blood thinner, her nosebleed didn’t stop so she wound up to being admitted to the hospital for 4 days.  She had to take a CT scan every 4 weeks instead of 6 weeks to observe if the aneurysm was dissolved.  Her troubles were gone once she stopped Taxol and now with T-DM1 & Perjeta, she says the side effects are tolerable.

As I read her story, a yellow flag was up in my mind.  Even though Perjeta is a monoclonal antibody just like Herceptin, this sounds like a typical nasty chemo.

Taxol has done great job for me, too, but I also have experienced peripheral neuropathy.  I had hoped that I would have less side effects if I switched Tykerb to Perjeta, but probably it is wrong and my side effects can get worse!  After I read a website of Pertuzumab Side Effects, Pertuzumab didn’t appear to be the great medicine but rather a poison.  The relief is that there are quite a few testimonies of the mild side effects if Pertuzumab is used with T-DM1 or Herceptin only – even without hair loss.

Perhaps I should change the course.  I should not use Pertuzumab with Taxol,which I should stay on at least one more month.  Instead I should save Pertuzumab for the future with Herceptin only or T-DM1.

After many prayers for God’s guidance, I emailed once again to the oncologist to ask her opinion.  May He continually lead me to the right medicine!

Reduce The Dose Of Taxol

The doctor ordered to reduce the dose of Taxol to 80% from today.

Doctors usually recommend patients to stay on the same regimen unless it loses effectiveness or the side effects are too much.

I heard of someone who has been on Taxol for 4 years, but I have been struggling with the side effects such as numbness/tingling of fingers and toes, cramps, stiffness of legs, swelling, etc for 7 months since I started Taxol.

As I shared my concern of the symptoms, my cancer-friend, who first recommended I take Taxol, said she has reduced the dose of Taxol .

So, I asked the doctor if I could do the same.  The doctor listened to my request, but I doubt my decision again wondering what if the “suspicious adenoppathy” was cancer; maybe I should’ve waited  to reduce the dose until I see the next CT result.

I even reduced the dose of Tykerb from 5 to 4 pills due to diarrhea last week.  The doctor let me decide how many pills to take, and although the diarrhea has stopped, I haven’t changed the dose yet.  Because this weekend I will play Christmas carols  at a nursing home and next weekend George and I will be out of town, I intend to stay on 4 pills until I come back from our short trip.

I am not sure if I am doing the right thing or not, while doctors say how aggressive my cancer is.  Yet controlling the side effects is also important.  Everything is gambling and I have to ask God to take care of me even if my decision is wrong!



Taking Tykerb With Food

The instruction of Tykerb I have been taking says that this medicine is to be taken on an empty stomach—at least 2 hours after and 1 hour before meals.  Also, I should not eat grapefruit.

However I found an article that if I take Tykerb with food or grapefruit, that will increase the bioavailability so that with less doses I can expect the same effectiveness as the high doses for the empty stomach, and in the result, that will save 60-80% of the cost.

The article was found in the Journal of Clinical Oncology issued in August 2007.

According to the article, the bioavailability of Tykerb will increase 167% with low-fat meals and 325% with high-fat meals.  In another words, 1 tablet of Tykerb (250 mg) with food and grapefruit juice could expect the same effectiveness as  5 tablets of it (1250mg) for the empty stomach.

The reason of the instruction of 5 tablets for the empty stomach is simply because the data was collected in that condition without being aware of the effect of the food.

Because of my Kaiser insurance, I don’t have to worry about the cost, but what drew my attention was that the article also mentioned that if I take Tykerb with food, probably the food will help reduce the side effects such as upset stomach, diarrhea, nausea, and so on.

Since last November, when I reduced the dose of Tykerb to 4 tablets because of diarrhea, I haven’t changed the dose to 5 tablets.  I wondered if I take 4 tablets 1 hour after meal, instead of 2 hours, maybe I would not have to increase the dose.

I showed my oncologist the article and asked her opinion.  She didn’t want me to reduce the dose like 1 or even 3, but she approved that I could  stay on 4 tablets and take them 1 hour after a meal.

Probably, as I am taking two antibiotics since I ran a fever, my stomach has been upset and this strategy has not been working yet.   I even skipped taking any Tykerb some nights because of nausea and diarrhea.

Though I have to be careful not to play too much with those medicines, I appreciate that the doctor has allowed me to decide many decisions for my treatments.

T−DM1 Was Approved!

My cancer friend in Japan, Dr. M, told me that T-DM1 was approved in an e-mail.

I opened the Google News and there it was:  I saw the article telling that the FDA finally approved T-DM1 giving it the name Kadcyla on Friday the 22nd, a week earlier than I expected.

According to the article, this new drug called a super Herceptin will cost about $9,800 per month; that will be almost twice as the cost of Herceptin.

If the drug is super good, the price is also super expensive!  Yet , as currently my deductable is zero for Herceptin with Kaiser insurance,  I am hoping it will be the same zero deductable even for Kadcyla (T-DM1) as well.

My next CT scan is scheduled on the 27th in this month.  Of course, I want a good result, but even if not, now I can have Kadcyla!

This is indeed great news and I am grateful for all the people who had signed the petition for T-DM1 to help me get it.

Thank you sooooo much and GOD IS GOOD ALL THE TIME!! 🙂

Vitamin B For Mouth Sore

For a while my mouth had hurt as I had  hot food or citrus, and soon I developed some mouth sores, which is one of chemo side effects.  While I was looking for a remedy, I told Dr. M, my cancer friend in Japan, about the mouth sores. She told me to take Vitamin B.

Vitamin B6 and B12 are already in my medicine box as my oncologist recommended them for the numbness and tingling of my feet and hands. As I took it, next day I felt already better, and in a week, my mouth sores were completely healed.  It is really amazing!

I am so thankful for Dr. M, who is like my free private doctor.

 Aloe for Preventing Granuloma

I have developed a hand-foot syndrome from Xeloda as well.  This side effect has made my hands and feet dry and shriveled. As if a too small plastic glove on my hand starts breaking because it didn’t fit on me, my skin started cracking along with the wrinkles.  I wear gloves and use ointment several times a day, but even around the nails has begun to hurt even when I press something a little with the fingers or feel sore when cutting onions or fruits.

This may be a sign of granuloma that I had to have  surgery for last year.  I don’t want to go through such trouble any more, so now I am rubbing aloe 100% gel several times a day and it seems helpful.

 Reducing the dose of Xeloda and Tykerb

As I told about the recent side effects, the oncologist surprised me telling that it is ok to reduce the dose if the side effects get worse.

She said “if”, but this suggestion was too appealing to resist. Next day I changed Xeloda from 6 tables to 5 on top of Tykerb that I have already reduced the dose from 5 to 4 tables.

I hope they are still effective and if the new dose eases the side-effects, I ‘d like to stay on the current medicine saving T-DM1 for a while.

New Joy For the Approved T-DM1

Although I hope that I don’t need to jump on T-DM1, my joy was renewed when I saw people at church excited with me learning that my longed-fo medicine is now available.

I realized that my wish came true because so many people helped me signing on the petition, and praying for me.

This is all God’s Grace and I cannot help saying again,