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.

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!


As Hope Grows

After having an enjoyable lunch with people from church, I did grocery shopping, blood withdrawal, and then at home I gave a couple piano lessons to my neighbor’s kids, walk with the old beagle, did laundry, and fixed dinner.  I was fine all through today without a nap or getting exhausted.

Since I added Taxol to my new regimen, I have had constant discomfort of numbness, tingling, pain, and stiffness of legs.

After the infusion on last Friday, as well as Saturday,  I got tired quickly and once I laid down for a nap, I could barely get up until next morning.  On top of that I found out that I had a difficulty of urination and my legs and the left hand with lymphedema were swollen.

I worried if this neuropathy had become permanent,  if the new drug, Perjeta, which I will have in a few weeks, might worsen current side effects, and if I could continue Taxol, which had been kicking the cancer out .

Then, “Dr. George” (my husband) suggested I take a diuretic, Advil, and a prescribed medicine for peripheral neuropathy.  I was reluctant to take more medicines, but  I took them anyway, and then yesterday and today, my limbs became normal size and I feel better!

Maybe it’s just because the time went by after the infusion.  Either way, I am thankful!

As I feel good, I feel like I can do so many things:  Perhaps I can continue Taxol, and even add Perjeta.  I feel even as if I were completely healthy!   It is a wonder that body and a mind are connected so tightly.

I called a nursing home to make an arrangement to play Christmas carols, which has been one of my resolutions of this year.

I had to give up volunteering at a hospital last May as I was afraid of many side effects of the new regimen,  but maybe I can do volunteering this semester.

Two college female students e-mailed me from Japan saying, “ Hi Kathy, I’m coming to study English!”  and right now I can say, “ Sure!  You’re very welcome!”

Even going to Japan may be possible.  Everything looks so hopeful!

I understand the reality is not so easy, but while I got fortified, I should move forward as much as possible.

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!

Fear Not The New Medicine

Getting nervous about starting Perjeta, a new medicine, I e-mailed my doctor once again to thank her and to ask about my next treatment.

Her answer was very kind:

“ I think to continue with Tykerb/Herceptin/Taxol would be fine……  At this point we want to do what is effective, has tolerable side effects, and most importantly what you are comfortable with.  Of course I understand your concern.  No need for thanks!”

She let me change the plan and go back to stay on the same regimen at least one more month until the next scan.  She said because nobody knows the right answer; I appreciate my doctor, who really listens to a patient.

On Thursday, at the chemo ward, finally I could talk with a nurse who knew about Perjeta.  Her patient has been on Perjeta in the regimen the FDA conditioned, with Herceptin + Taxotere.  The patient finished the 3rd cycle and she is doing fine with mild side effects.

As I said I got scared after I read a story that a patient who had used Perjeta with Taxol+TDM1 almost lost her vision, the nurse answered,

“Most comments people report in such a place are extreme because people who are fine usually don’t write about it.  Even for Herceptin, if you just look at the list of side effects, you would get scared because it is long.  I think Perjeta is the same as Herceptin.”

I see.  Her answer made sense and I was encouraged.

Next scan will be at the end of October.  I don’t know what kind of the result I will get, but I am thinking again of Perjeta as a next regimen.