Chemo and Side-Effects

The 1st week of Tykerb

Monday

The first night when I started Tykerb, I woke up due to the irritation of the stomach and nausea.

‘Maybe I should drink something.  ‘

I went to the kitchen and opened the refrigerator.  Picking out the homemade lemon-apple juice, I mixed it with warm water and drank it.

Then, sitting at the computer,  I emailed my sister,Mami, in Japan.   After a while, maybe the warm juice was good or maybe sitting up was good; I don’t know, but I felt better so I went back to sleep.

Tuesday

Same as the night before; the irritation of the stomach and nausea woke me up during the night.  Wondering that I should take the medicine between lunch and dinner, I sent the oncologist a question through an e-mail, and before bed time, I took a spoonful honey, which was supposed to be good for the irritation of stomach according to some web sites.

Wednesday

The 3rd night of starting Tykerb, I slept well without any stomach problems.  Maybe Honey was good!  The oncologist also replied to me saying it should be ok to intake Tykerb before dinner.

Thursday

In the morning I had diarrhea.  Right away I took the anti-diarrhea medicine I had prepared, and researched the food for diarrhea on line.  Raw vegetables and fruits, daily products (except yogurt), food with lots of fibers, cold, and spicy food should be avoided and bananas, yogurt, brown tea, honey, white rice and bread, and soup are recommended.

Well, brown rice, whole wheat breads, lots of vegetables and fruits, green tea, and so on that I thought were good for cancer sound not good for diarrhea.  I got confused.  Anyway I tried to drink a lot and watched my BM carefully.  Fortunately the anti-diarrhea medicine was working and even during the night I slept well without irritation.

Good Friday

Today, two thousand years ago, Jesus was crucified.  Nevertheless,  we call it Good Friday because He paid for our sins by suffering on the cross and defeated our death by His resurrection three days after the crucifixion.  Easter is more important than Christmas for Christians because of this reason.

Because  of His sacrificial love, I love Jesus.  I want to give Him everything! — Tears flowed and the strong emotion seized my heart while I was in a special Easter service at the Vineyard West LA

On the way home, being filled with joy, we decided to go to George’s favorite Yakitori restaurant, Shin Sen Gumi

Here the chef and waiters are extremely energetic and polite; all of them bow together to greet every costumer as he/she comes in and out of the restaurant in a loud voice, “ Welcome!” and “ Thank you very much!”

George, who likes not only their yakitori, but also this enthusiastic atmosphere, repeated, “I deeply appreciate Japanese culture since I met you,”and “ It was really a good day!” with contentment.

I thought it was true blessing that I met the good man,George, and  the wonderful God,Jesus!

Saturday

The 6th day of Tykerb. I got up with sore throat and headache –  like I caught a cold; I felt chilly and weak.  As the pain in my hip that didn’t bother me for a while also came back, I took a long nap but even after dusk, my pain was not eased.   Taking Tylenol and vitamins, I went to bed early.  Maybe this was also a side effect of Tykerb.

Easter Sunday

Tylenol has been helpful.  I recovered gradually by the time of BBQ with our children and I could enjoy it, thankfully.

I was told that radiation may also make me tired.  So far diarrhea has stopped since Thursday and irritation of the stomach has been gone as well.  I hope my body is adjusting to the new regiment and the side effects of radiation starting this Wednesday will be bearable.

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.

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.

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.

Laguna Beach to Emergency

I thought that we had a good trip relaxing and enjoying the beautiful town until the last night of the trip.

I felt already nauseous after I had a BBQ chicken at a restaurant we went late at night, but I took Tykerb, a main side effect of which is diarrhea, before I went to bed.

Probably this was a bad idea.  I woke up around 2 am with an intensive nausea and abdominal pain and I was stuck in the bathroom all night until next morning.

I have never had such an excruciating pain.  Folding my body in half, I had cold sweats followed by chills and was afraid that I might pass out and need to call 911.

Though I was so nauseous being ready to throw up, only saliva filled up my mouth over and over.

Finally as the morning came, I thought I was relieved from the nightmare.  Yet while George and I stopped at Calvary Chapel Costa Mesa on the way home, again I was attacked by the nasty sensation of nausea, diarrhea, and stomach pain and had to leave for a hospital even before the sermon started.

George suggested going to an emergency and I agreed.  By that time I wondered if I had food poisoning.

In the emergency, once I received a medicine for nausea and morphine for pain, they started working immediately and I was relieved completely.

Numerous exams such as blood test, urine test, ultrasound, etc were done and as everything looked well, I was discharged around 5pm.

The doctor said probably it was food poisoning.  Since my immune system was weak by chemo, perhaps my body reacted sensitively with the bad food.

Anyway I am so glad that I was freed from the worst pain.  I had called Jesus all night asking to touch my body to heal me, and he did.  Thank you Jesus!

The Pain Is Gone With Fever

I had a high fever, over 103 F, for three days.  I had no appetite, felt chilly, and achy all over my body.

Concerned about my white cell count getting low, as well as expecting some kind of treatment for the pain I had under my arm, I went to ER again.

Fortunately the white cell count was normal, a urine test was normal, and an x-ray I had to take again was also clean.

I came home with an antibiotic for bronchitis and a pain medicine.

I didn’t take the pain medicine though, as the fever is gone on the 4th day, I noticed the pain under my arm is much less.

I wonder why.

Is the antibiotic working even for the pain?  I don’t know.  But I am sure that so many people must have prayed for me and the prayers were granted.

Thank you all who have prayed for me! 🙂

 

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.

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,

GOD IS GOOD ALL THE TIME!

Not Yet T-DM1?

Yesterday was a day to visit the oncologist.

We discussed about the CT result, side effects, next regimen, and the possibility of going to Japan.

The doctor’s smile and the word “remission” made me happy again.

If I am in the remission, now I ‘d like to reduce the side effects.  I told her that I was interested in changing to T-DM1.

In spite of my expectation of hearing her yes, her answer was a surprise.

“ I don’t know if it is good idea to jump to  T-DM1 as you are in the remission.  If cancer comes back, T-DM1 is the one you need, but I have to research more to find out if T-DM1 is good for  maintenance.”

As buttoning and zippering were getting harder because my fingers bleed even by a little pressure on the fingers, I held off on Tykerb together with Xeloda which was on the off-week.

Since I have heard that  T-DM1 had much less side effects than conventional chemo, I asked her opinion again.

“ Yes.  Three drugs have more side effects than two, or one so as for maintenance, it is better to reduce the drugs.”

So here are my next options.

1)   T-DM1 only

2)   Herceptin and Perjeta (approved last June)

3)   Herceptin and Xeloda ( I found  data that Herceptin & Xeloda is more effective than Tykerb and Xeloda)

While I will continue one more cycle with three drugs, Herceptin, Tykerb, and Xeloda, my oncologist will consult other doctors and find out the best option for my next regimen.

My last question was if I could go to Japan.  I haven’t been to Japan since I was diagnosed with cancer in 2010.  I couldn’t be there even for my father’s funeral. Now my mother is getting frail and I long to spend the time with my family and friends over there.

The doctor said probably I could, but recommended to buy a travel insurance just in case for an emergency in Japan, and if cancer comes back and caused some pain, shortness of breath, or spreads to the brain, I would have to cancel the trip.

I was glad to hear that it would be possible to go to Japan, but also realized that I still have a bomb, which may explode any time and it is risky to leave from the U.S.

I was wondering to go to Japan in June or September, avoiding scorching  summer, but  listening to the advice from the doctor made me rethink that probably I should go to Japan sooner while cancer is in remission.  My target is now in May.

May God grant my wish and lead me to the right time to go to Japan!

Chinese Medicine Gosha-Jinkigan

The Brain MRI result came back negative.  Yay!

Now I can live peacefully at least for the next 4 months until the next CT scan.

Strangely the chest pain I was concerned so much about  is now so mild that I forget about it most of the time.  I guess that was the psychological affect.

Either way that is good.  If I can solve the muscle pain, stiffness, and peripheral neuropathy that has been bothering me since I used Taxol, I would be able to continue T-DM1 forever.

 

I heard from Dr. M that a Chinese medicine Gosha-Jinkigan helps peripheral neuropathy.  Although it is not available to purchase in the U.S., thankfully someone sent me this medicine from Japan.

The back of the medicine bag says this is effective even for lower limb pain.  If that’s true, I am so interested in using it.

I asked my oncologist about this med showing the web site copies explaining how effective this med is for peripheral neuropathy without any affect on taxol.

Yet, she was still skeptical saying nobody knows how this Chinese med affects T-DM1, which is so brand new.  She warned me about many supplements, herbs, or Chinese medicine that might interfere with the effectiveness of chemo, and the more they work on side effects, the more they could interfere with the chemo.  If I am aware of that risk, it’s ok to try it, she said.

Thinking  twice, I decided to try the med for two weeks and see how it works.  If it won’t help the side effects, that’s the end of the story.  If it works, I will continue it and ask to take the next CT in three months instead of 4 months and see if T-DM1 is interfered with  or not.  I understand the risk.  But I want to find the way to continue T-DM1 without muscle pain and stiffness that bugs me so much.  Tylenol helps, but in the long run usage may damage the liver.

In the past when the oncologist and I had different opinions,  most of the time she accepted my preference.  Probably I am a difficult patient for her , but I am thankful so much for her who always give me freedom to choose.

 

Sugar Level Surged

I asked for a urinary test on a day of the infusion concerning UTI (Urinary Tract Infection) because of frequent urination.  In the result I found no UTI, but my glucose was over 10000 having surged from 30 in June.

My father had diabetes.  Did I develop diabetes also at last? That was my first reaction.  Yet on second thought, I wonder maybe this was a side effect of T-DM1 because the number jumped so quickly in a short time.

I Googled T-DM1 and the sugar level. I found one comment saying that someone’s sugar level raised while being on T-DM1 and had to take insulin. Yet, that’s all I found after 20 minutes of search.

“How about steroids?”  I wondered next.  I have been taking 2 tablets (8mg) of a steroid to prevent nausea each time I have the infusion since April when I started T-DM1.   Then, Oh yes. There are lots of sites saying steroids could increase blood sugar level.

So, my doctor ordered to check the blood sugar level for a week to see if I am diabetic or if this is a side effect of the steroid.

It’s a little painful prick to punch a needle in my finger, but it is amazing that the monitor machine shows the sugar level immediately.

sugar monitor

My evening sugar level before dinner tonight was 143 while more than 200 requires a medicine.  I felt better thinking that the cause of high blood sugar was not likely diabetes but rather the steroid – though the ideal level is less than 120 according to the doctor.

 

Since I am doubting  the cause of my weight gain was also the steroid, I am going to reduce the steroid to 4 mg from next infusion.  If I am ok without nausea, I want to remove steroids completely because steroids may cause osteoporosis as well.   Hopefully my sugar level will go down as the steroid is lessened.

 

 

T-DM1 May Be Held Off

I went for the 7th infusion of T-DM1 (Kadcyla).  I reduced the dose of Decadron, a steroid, into a half last time.  Today I didn’t take it at all and there was no reaction.  Yeah!

Before the infusion I had a regular check up with my oncologist.

“ How are you?” asked she.

I told her I stopped the first Chinese medicine I bought online because it didn’t help, and now I have been trying a different brand, which is a little better than the first one, but still as I am working in the kitchen, my legs start bothering me.  Wearing socks is also difficult because my legs are stiff to bend.  I have a hard time to stretch my back standing or sitting up.  The left arm with lymphedema has been losing more motion.

Then the doctor said,

“ This will be disturbing for you, but in the future we may need to consider stopping Kadcyla to give the body some break from all side effects.”

Generally, once cancer metastasizes, a patient is on chemo indefinitely, and even so, often cancer comes back in a few years. Mine is very resilient.  I reacted to the doctor’s comment with a reflex of wonder : “Is it ok to stop only after 6 months? “

I would consider it if the side effects are overwhelming, but in spite of my complaint, T-DM1 is still much better than other chemo.  In fact all my problems beside the muscle pain have been there since I was on Taxol.  Even if I stopped T-DM1, the problems may not go away.

The doctor first recommended me to exercise.

As I see the HER2+ forum, T-DM1 seems effective for about two years.  If that’s true, I want to continue at least two years.  I need to do the exercise seriously to show some improvement, otherwise I may not be able to continue T-DM1.

Platelet’s Number is Plunging

Last Tuesday when I went for the infusion, a nurse told me my platelet’s number  of a blood test I had the day before was under the borderline for receiving the infusion, and I would need a blood withdrawn once again.

It was totally unexpected.  A result sent by e-mail yesterday after the lab was everything normal though it didn’t include the number of the platelets.  For the last six months I thought I was doing just fine with platelets despite a warning of low platelets count as one of the major side-effects of T-DM1.

The 2nd lab came back with 83,000 platelets while the 1st one was 74,000.  Since the borderline was 75,000, I barely made it to have the infusion.

My oncologist hasn’t mentioned anything about the platelets, but the chart I got from the nurse showed as below.

8/13–178,000

9/6—166,000

9/30–100,000

10/4—74,000

I don’t know the numbers before 8/13, but it has been plunging constantly, and if this is a side effect, I am afraid that next time will be even less.

According to the Mayo Clinic web site, the normal range is between 150,000~450,000.  If the platelets number is low, people may have anemia or bleed easily and have difficulty to stop it.  No wonder I have had bleeding recently when I brush my teeth, and a bloody nose yesterday after the infusion.

In Japan, Dr. M told me that there was a report of subarachnoid bleeding among the T-DM1 patients.  Indeed, the  Mayo Clinic web site says it is rare, but the low platelets may cause fatal bleeding in the  brain or intestine.

Have I had headaches because cancer spread to the brain or I am bleeding in the brain? If it were bleeding, probably I would have been dead or paralyzed by now.  Then, is this an antecedent symptom of the bleeding?

I also learned a headache was one of side effects of T-DM1.

I need a brain MRI.  I made the appointment  on 11/1.

TURNING POINT

Slide1

The Platelet number was 71.  I received the result of the lab prior to the T-DM1 infusion and as I was concerned, the number dropped again from 74 of three weeks ago.  Although the doctor said I could still receive the infusion because it was only slightly lower than the minimum borderline 85, I asked her to postpone it until next week hoping the number might improve.

I also asked for a chart of the last 12 months platelet numbers.  A year ago, on 11/6, the number was 326.  That means now I have even less than 1/3 of them.  I was shocked.

Last December after I changed Taxol to Xeloda, the number went down to 200s and moving up and down until June 2013, and then plunged straight.  Since it was April 2013 when I started T-DM1, this is definitely a side effect of T-DM1.

The doctor told me she could reduce the dose to 80% from next week, and I was happy with the idea, but  I could not help sighing thinking how difficult the treatment was.  I still don’t know if the new findings in the most recent CT are the sign of cancer relapse or not, either.

Walking down the hallway to the parking lot, I wondered if I should go volunteering instead of dispatching someone else.  One of our cancer patients that Grain of Wheat has supported was asking for a ride for her grocery shopping.

George always says, “ When you are getting down, you are thinking about yourself more and more.  If so, you should go out to help someone else.”

I have  shared this wisdom with many others, too.

I thought  today was a day to apply this.

Slide1

Taking out the cellphone, I called the client;

“  If it’s ok with you, I can come to pick you up in 15 minutes.”

When I came home after two hour volunteering, my heart was already lighter and I felt better.

Slide1

At night I went to a Bible class. On the whiteboard was a cross, and   George told participants to write down any thoughts looking at the cross.

Cross Lesson

“ The cross is my core center.  From there I find hope and strength to face tomorrow.  The cross is the symbol of Jesus’ incredible sacrifice and love for us and for me.”

Strangely my heart was getting lifted up while I was writing and thinking.

“ Yes.  He died for me so that I can live for eternally.  Why was I whining with such small things?  I will make Him cry and dishonor His sacrifice.  I have to keep up with His expectation and live worthy of the cross!”

Though the platelet number is still low, the trajectory of my heart is climbing up.   GOD IS GOOD ALL THE TIME!

 

 

 

Reducing the Dose of T-DM1

One week after I held off T-DM1, I had a blood test again.  This time the platelet count was 87.  It was improved from 71 last week, and more than the minimum criteria to receive the infusion.  However, I wish the count were higher.

Informing the result of the blood test, my oncologist asked me what Dr. Slamon said about reducing the dose of T-DM1  in her e-mail.  I replied that my appointment was postponed due to his surgery, but I’d like to see how the side effects would change including the low platelet count by reducing the dose.

So, this week  the dose of T-DM1 was dropped to 162.3 mg, which is about 83% of  194mg three weeks ago.   According to the oncologist and Dr. M, a cancer friend, who always gives me valuable advice,  I can reduce the dose down to 80% keeping the same effectiveness.

Yet I am afraid that the platelet count may go down again because my recovery seems slow. If so, what should I do?  Should I reduce the dose more or hold off the drug again?  I’d like to hear Dr. Slamon’s opinion about this issue, also.

God, please touch Dr. Slamon’s body and restore his health as soon as possible!

The lowest Count of Platelets

Since today was supposed to be a day of the infusion, I went for a blood test yesterday.  The phone call came from the hospital and I was told that today’s infusion had to be rescheduled to next week because the platelets number was 68, which was the lowest ever.

Last time the counts was 87, which was improved from 71 after postponing a week. Since the dose was reduced to 83%,   I was hoping  it would help stop lowering the counts, but the result was disappointing.

I wanted to get the 2nd opinion from Dr. Slamon to discuss this issue as well as many others, but since my appointment was canceled twice due to his operation, I haven’t heard anything from his office.  I e-mailed to the office Monday and then the response  said that  probably I wouldn’t be able to see him until after the New Year’s Day.  Another disappointment.

I will have a CT scan soon and find out if the new findings in the last CT are the sign of relapse of cancer or not, but regardless of the result, I may have to give up T-DM1 if I cannot halt losing the platelets.

Then what is next?

Perjeta is told to be very powerful.  This new drug shows an excellent result when it is used with Herceptin and Taxotere.  Yet  Taxotere failed  in my first regimen.  Taxol, which is the same family as Taxotere and removed cancer when it was spread to the lungs, was halted because its side-effects of numbness and tingling could become permanent, according to Dr. Slamon’s advice.

A cancer friend I encountered through the blog told me she was going to start Xeloda with Herceptin and Perjeta.  Maybe this combo will be my next one, too.  I should ask her about this new drug.  It is so great to be able to share the information with friends I got to know through the blog!

Finishing Chemo May Be Possible

The appointment with Dr. Slamon, which was canceled twice due to his surgery and pending for a couple months, finally came to the reality.

Dr

Dr. Slamon’s office in Santa Monica. According to last year’s news, he was nominated for Nobel Prize Medicine.

I was worried about his health, but he said the surgery was because he had a torn Achilles tendon.   I am glad it was not serious.

Today’s main focus was the concerns of the side effects and chemo-holiday, which my oncologist at Kaiser had suggested tome recently:  She suggested to take a couple-month break from chemo in order to give time to recover for my body and then resume T-DM1.

“ What side-effects do you have?”Dr.Slamon asked me.

“ The first concern is low counts of the platelets, the 2nd is increasing AST level (an enzyme which indicates liver or other organs functions), the third is stiffness of the body, and lastly dry skin and itchiness,” answering him I showed the chart of the platelets and AST.

Looking at them, he said, he wasn’t worried about platelet counts but AST, which jumped high recently.  As long as I am on T-DM1, AST level keeps going high and that will be a concern.

“Stop T-DM1 and change to Herceptin + Perjeta,” said he.

Instead of taking a break, he recommended to keep going with a new regimen which wouldn’t affect platelets and AST.

“How long?”  I asked.

“At least until the numbers of platelets and AST get back to normal and if the new regimen won’t work, go back to T-DM1 or add Taxol. Yet, if it works, keep going,” he said.

And if I can be in remission for 36 months, which means one and half more years, it’s probably ok to finish chemotherapy though some doctors say 5 years.

Wow!  Is that true?

I asked about the highly expected vaccine also.  The doctor said the clinical trial has been active in Seattle and I might be eligible for the trial even though I don’t have any measurable tumor.  If I want, I should check it out, but I should continue chemo because the effectiveness of the vaccine is unknown yet.

“You have been doing right things. I think you will be O.K.”  He finished the consultation with such an encouraging words.

The next is to discuss with my oncologist based on today’s advice on this Friday, the 17th.

I know I shouldn’t expect too much, but finishing the battle with cancer may not be a dream.  It is hard to believe, but I pray that the dream will come true!

Ending T-DM1

I visited my oncologist and discussed about the next step based on Dr. Slamon’s advice.

“ Because my cancer metastasized while I was on Herceptin and Tykerb (which are both antibody drugs), I am a little nervous with Herceptin and Perjeta (which is also an antibody drug),” I said.

“ But Tykerb and Perjeta work differently.  If you had still cancer, I understand we should go aggressively adding chemo, but this is for maintenance and we want to rest your body, so I think just two (Herceptin + Perjeta) are fine.”

The oncologist agreed with Dr. Slamon’s advice without any questions, and we made a decision to end T-DM1, which I was on for 9 months, and start the new regimen with Herceptin and Perjeta in the next infusion in two weeks.

In my research, the side-effects of Herceptin & Perjeta included anemia and Neutropenia, fatigue, diarrhea, nausea, rash, peripheral neuropathy, etc- just like other chemo, but because I was told I would not need pre-blood test, probably at least I can cross out anemia and neutropenia.

I am not sure if the new regimen will be easy on my body, and of cause nobody is sure if it suppresses cancer and keeps me in remission.  I have to trust the doctors, believe in God, who has been so faithful, and try it.

 Side-Effects of a Chinese Medicine

I thought my recent problems, the dry skin and itch, were because of T-DM1, but experiencing nausea and stomach pain on top of that, I remembered that  the Chinese medicine I have been taking for neuropathy and muscle ache could cause side-effects, as well.

As soon as I got up I checked the side effects of the Chinese medicine before my appointment with the oncologist at 8:30am Friday.  Surely enough, rash and nausea were included in the possible side-effects along with cough and liver failure.

It is my responsibility for using the Chinese medicine, and I am so thankful that I noticed they are not because of T-DM1 but the Chinese medicine. I stopped the Chinese medicine, and hope the problems will go away soon.

 

 

 

This is my 7th Regimen

Saying Good Bye to T-DM1, I started Perjeta with Herceptin today. This is my 7th regimen.

The premedication was Tylenol and Zyrtec. The first infusion took more than 3 hours in order to avoid any reactions.

Thankfully, so far I am fine.

I was told that this new regimen doesn’t require a blood test, but I requested to check the concerned platelet counts and AST, an enzyme produced from liver.

While the level of AST, which had been going up continually out of the normal range, improved from 61 to 50, the platelet counts plunged again from 99 to 75.  If I hadn’t changed the regimen, probably I would have postponed the infusion again.

I wish I could continue T-DM1 longer, and it was too bad that the side-effects have worsened.

Besides Platelet count and AST level, my main complaints are muscle weakness, aches, cramps, stiffness, and numbness and tingling from peripheral neuropathy. These side effects have been bothering me since I was on Taxol two years ago, but it has been getting serious.

Last week when I came back from a shopping mall, walking about 3 hours or so, my legs were so heavy and as I rested, I had the worst cramps in almost all muscles in the both legs.  It was so bad that I got worried if I could walk in the trip of Israel.

Since I am no more on T-DM1, and have postponed the next infusion until I come back from Israel, I hope all side effects will be eased so that I can enjoy the trip!