Experiment for Neuropathy

Among many my side effects is numbness and tingling of toes and fingers.

Since Taxol was added, this is getting more annoying and sometimes hurting.

It’s called Neuropathy, which could cause difficulties of walking or buttoning if it gets serious.

Mine is still mild, but in spite of the multiple Vitamin B a doctor recommended me to take every night, I haven’t seen any improvement.

As I told so to the doctor, she prescribed a pain medicine.  Yet the description of the medicine said that this was used for anti-depression as well.  Anti-depressions I know of could prevent not only depressions but also excitements, which made me nervous to use it.

I also told the concern to my friend, Dr. M, who first recommended that I use Taxol, and then she said to try ice packs on my toes.

Each time when she has an infusion of Taxol, she ices her feet with ice packs, which contracts the blood vessels and prevents the medicine to reach the toes.

I have bad circulation and have a hard time to sleep at night with cold feet.

The infusion of Taxol takes an hour and if I have to ice my feet so long, it’s like I’m  in a refrigerator!

I was reluctant, but f it’s working for Dr. M, I should try it, too.

I went to stores and got two ice packs and a pair of arm covers.

Wearing two pairs of socks, I inserted my feet into the arm covers where the folded ice packs were placed.

Ugh! It’s cold!

Pretty soon my big toe began hurting.

Hang on! This is better than the medicine!

So I kept icing my feet and made it to the end of the infusion.

I am not sure how many people would like to try the same, but hopefully it will help my toes.

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.

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!

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!



No More Taxol

Today was supposed to be a day for the infusion of Herceptin and Taxol, but following the opinion of Dr. Slamon, I finished Taxol and had only Herceptin.

Instead of starting Xeloda, the next oral chemo, right away, my Kaiser oncologist gave me a week break just in case.

With Xeloda, my infusion will go back to every three weeks, instead of every week.  If so, I may be able to go to Japan.

It may take a long time for Taxol’s side effects, such as peripheral  neuropathy, stiffness of my legs,swelling, etc, to go away, but a least my hair will grow back!

Xeloda also has numerous side effects and they may be nasty as well, but T-DM1 can be approved at the end of February or March.  So I hope I can tolerate whatever Xeloda causes until then.

Next CT scan will come probably sometime before Christmas.  If the result is stable, that will be a wonderful Christmas gift.  If not, I will change Tykerb to Perjeta, a brand new medicine, too, and look for a clinical trial of T-DM1 in which I can participate.

The plans were made and now I leave the rest for God and will go on a small vacation to Laguna Beach with George this weekend.

He will have a wedding over there and we have made the plan since last summer.

It is off season though, if weather is good, we can walk the beach, enjoy Christmas shopping, and even if the weather is bad, I can enjoy reading, cooking, and just being together with George. 🙂

I didn’t expect it at all, but the weekend without Taxol or Xeloda should be wonderful and this is another gift of God’s grace.