First Cycle: Xeloda & Tykerb (Medical Update)

(cross posted from Coffee and Chemo
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The magic number for cancer seems to be 3.

So far, all my chemotherapies seem to be based on 3 week cycles (with the exception of the bone drugs, which are on a 4 week cycle).

Today, I completed the first 3 week cycle of Xeloda and Tykerb (Lapatinib).

Xeloda is taken every day, twice a day, 4 pills each time, for two weeks straight, then one week off.

Tykerb is taken every day, once a day, 5 pills each time, for the entire three weeks.

I meet with my doctor tomorrow to evaluate the first cycle.

I imagine things will continue pretty much the same for the next cycle.

I am super tired, but I do not know if that is from this regimen, or the radiation, or the previous chemo, or the Bar Mitzvah, or having a house full of guests for almost a month, or the beginning of school, or whatever. There are so many possible explanations; I don’t even know how to figure it out!

Besides that, I have the following side effects:

1. Low appetite (not the worst thing for me at this time)

2. Mild nausea (not too bad; no need for drugs)

3. Mild stomach upset — sometimes constipation, sometimes diarrhea (not too bad; when necessary, I take drugs to prevent diarrhea)

I am also very thirsty, but it might just be the heat.

I had a week of migraines, but they might have been because I was not drinking enough.

I keep forgetting things. That might just be because I have a bad memory. I feel like it is getting worse, but I cannot tell for sure.

I am still bald. I am getting used to it, but I still wish my hair would start growing back.

The bald thing is really hard on my kids.

I am in a bit of a slump emotionally. It could be from the whole brain mets thing or from my family leaving. Who knows?

I am so tired of having cancer. I hate the way it sucks up my energy.

For every hour of activity, I need three hours to recover. (There it is again, the magic number)

I just wish I did not have cancer.

I want it to go away.

The longer I live with the cancer, the more I am forced to face the fact that it is not just going to go away.

Tomorrow, I have to start taking all those pills again.

I hate it.

Please pray (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Taxotere (and Herceptin) — The Next Chapter

(cross posted from Coffee and Chemo. You can read the backstory here.)

 

I thought it would be simple.

I was wrong. Again.

But I am jumping ahead….

****WARNING: LONG POST****
(feel free to just skip straight to Part II)

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PART I — Herceptin

Because new drugs are usually given a bit slower than normal, the nurses were anxious about finishing the Herceptin early so that I could start the Taxoter as soon as possible. Now, having been around the chemo block one or two times already, I already figured this out on my own. So when D came in and suggested we up the rate of my IV drip to 130 (instead of 120), I immediately agreed.

A few minutes later, my oncologist came into the day room… to talk to me.

“What’s wrong?” I asked, since he does not usually pop in to chat.

With a very serious face, he told me how important it was to finish the Herceptin on time, otherwise I would have to come in another day for the Taxotere. He knows how much I dread coming in another day. Then he suggested that I follow D’s recommendations for how fast to administer the Herceptin.

Since I was doing that already, I saw no reason to argue.

After he left, I realized I neglected to mention that I already felt some mild chest pain, which is the reason I get Herceptin slowly in the first place.

I was a little nervous, but I figured I would mention the discomfort to D if/when she came in to up the rate. Since the Herceptin was almost finished, I suspected this might not even be an issue. I have already learned not to make a fuss out of something that might not even happen.

And, in fact, neither D nor anyone else suggested raising the rate in the few minutes that were left before the Herceptin finished, sometime between 12:30 and 1:00.

THAT was the easy part of the morning.

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PART II — Taxotere

I already knew that I would need to wear special “freezer” gloves and slippers during the Taxotere treatments, to prevent my fingernails and toenails from turning blue.

I was not prepared for how FREAKING COLD they would be!!! (…trying to keep my blog family friendly here….)

At first, the tip of one of my left fingers started tingling. I wondered if it was from:
1. neuropathy
2. Taxotere
3. the FREAKING cold gloves

Then the fingers on my right hand started burning.

I ruled out neuropathy, but I still was not sure which caused the burning sensation, the Taxotere or frostbite.

Finally, it was so painful, I called a nurse. The FREAKING gloves were FREEZING my fingers!

The nurse offered this simple advice: when my fingers get too cold, remove them from the gloves until they warm up.

She added another suggestion: only stick my fingertips in the gloves; keep the rest of my hands and fingers outside.

I asked if it was absolutely necessary to keep my fingers in the gloves. The nurse said that I had a choice: cold fingers or blue nails.

Now, I have never been particular about the way I look. I do not use make-up, I wear simple and comfortable clothes, and even now I walk around my house with my thinning hair out in the open. But to openly choose to have ugly blue fingernails was too much. I took a deep breath, held back my tears, and accepted that I would just have to learn to accept the freezer gloves.

It took TEN MINUTES to warm up my fingers enough to stick them back in the gloves!

My trials and tribulations were far from over.

A few minutes later, my chest started hurting. At least, I thought it did. I was not sure. I thought I felt pressure on my sternum. But maybe I was imagining it. Or maybe it was the same pressure I felt earlier from the Herceptin. I could not tell.

So, I waited.

A while later, I thought the pressure felt a little worse. But I still was not sure.

So, I waited.

Meanwhile, my chemo date valiantly tried to entertain me. Luckily, she is one of the most positive and good natured people I know, so she did a great job of distracting me.

Still, I felt the pressure getting stronger. And yet, maybe it was all in my head.

So, I waited some more.

Eventually, the pressure was downright uncomfortable.

However, I still was not sure whether the pressure was from:
1. the Herceptin
2. the Taxotere
3. my mind (perhaps stress related)

I did not want to make a fuss. (I know this is surprising for those who know me well, but I have long since discovered that I become rather weak-kneed when having to confront members of the medical community)

Finally, I could not take the pain!

I felt like an elephant was sitting on my sternum!

My wonderful chemo date told me I looked green. She kept reminding me to keep breathing. I had not even realized I was holding my breath (to try to alleviate the pain).

I called the nurse, who stopped the IV and went to consult my oncologist.

For the second time that day, my oncologist came to see me in the day ward. He asked me a few questions and turned around to go.

“Wait,” I called after him, “What’s the plan?” he responded, “I think I want to do an Echo and check your heart.”

“I am not sure;”

Not what I wanted to hear.

He decided on an EKG.

With time, the pain lessened. The EKG was normal. The oncologist determined I was good to go.

Chemo resumed.

So did the pressure in my chest.

This time I did not wait before telling the nurse. She slowed down the drip. I felt mild relief.

Periodically, different nurses came in to check on me. I answered them all the same: the pressure is unpleasant, but I can manage.

Meanwhile, I switched the freezer gloves and slippers at least twice, carefully making sure that I did not freeze my fingers off.

I cannot begin to tell you how relieved I was when the Taxotere finally finished.

This was NOT a fun chemo day.

Next time, I will know a bit more about what to expect. That should make it easier, even if I have the same symptoms (I sure hope I won’t).

I still feel pressure in my chest, but not so bad.

I have slight itching, but nothing too severe.

I am exhausted!

This stuff better work!!

Limitations

(crossposted from Coffee and Chemo)

“Are you sure you can do that?” asked my sister.
 
“Why not??”  I responded, irritated that she was even asking.
 
We were discussing the possibility of diving with the dolphins in Eilat, something I have been dreaming of doing for years! 
 
When she mentioned that she always wanted to go water skiing, she added, “You should ask your doctor about that, too.”
 
Later on, she said the same thing about rollercoasters, and Wall Climbing, in Teddy Stadium.
 
The questions annoyed me.
 
I wrote all her questions down in my yoman (diary), so I would not forget to ask my oncologist during my appointment on Tuesday morning.  I would show her! 
 
Tuesday morning, I strode into my doctor’s office and stopped.  Two young adults, in white coats, were just hanging out in the room.  
 
I paused, then queried the smiling young couple “Are you students?”
 
They smiled at me.  “We are studying medicine at Soroka Hospital, in Be’er Sheva.  Would you mind if we stick around during your appointment?”
 
Well, it is not as if my medical information is not out there for the entire world to read!
 
“Are you planning to stay in Israel?” I asked (unable to curb my Zionism, even in the oncolgy ward).
 
They looked at each other, and smiled again.  They came to Israel as part of a Columbia University program, studying third world medicine.  About 80% of the students are not even Jewish.
 
As it happens, the young man is Jew from Maryland; the young woman is a non-Jew from Denver.  Cool.
 
My doc came in, turned to the students, and said, “Fasten your seat belts.” Then he introduced my case…

I tried hard not to interupt, as he gave a 2 minute overview of my medical history.  I did interject when he described minimal pain; but I could not argue when he pointed out that I was managing my pain with minor league pain killers (Optalgin and Algolysin). 

We then discussed some general questions, like the sensitivity in my jaw (“Why are we talking about her teeth?” My doctor quizzes the students*) and my upcoming second opinion (What I should bring with me; how I should present my situation, so as not to bias the doctor; etc)
 
The meeting was more or less “normal,” until I turned to my list, and started asking my “real” questions.
 
“Can I SCUBA dive,” I asked.
 
“WHAT???” Moshe turns to me, in surprise (read: shock!).
 
“I want to go diving with the dolphins,” I calmly explain to the doctor… and my husband.
 
“I don’t know,” says my doctor, not the least bit perturbed.
 
“What could be wrong with SCUBA diving?” I challenged.
 
“I don’t know,” repeated my doctor.
 
“One of my teachers, who is in Israel right now” inserted one of the young students, “is a pulmonologist who has done research about SCUBA diving.”
 
“It’s a different field,” my doctor noted.
 
I wave my hands to indicate a magical aura, and chant “lifelong dream… diving with dolphins….”
 
I can see that my doctor is not moved by my creativity, and youthful eagerness.
 
“You only go down about 10 meters,” I add, not quite managing to keep my voice from pleading.
 
But my doctor is concerned that the pressure might damage my bones.
 
“You can try asking this fellow’s friend,” he says, nodding towards the student.
 
I take a deep breath.
 
“What about water skiing?” I ask.
 
“WHAT???” Moshe says, shocked yet again.
 
“No,” says my doctor, this time with no hesitation, “impact.”
 
“What about wall climbing?” I ask.
 
“WHAT???” Moshe says, nearly jumping out of his seat. “Where are you getting all these ideas?” he asks, looking at me like I just landed from Mars.
 
“My sister,” I reply, as if stating the obvious.
 
“No,” says my doctor, he does not hesitate this time, either.

“But you can’t fall,” I argue, “They use a belay” (to secure a climber at the end of a rope).
 
“If you lose your grip, the rope will catch you, stopping your fall, and causing impact,” my doctor explains, kindly.
 
He is patient, acknowledging my disappointment, as he turns to his students to explain the crazy lady sitting opposite him “She is a 42 year old, mother of three….”
 
I am resigned as I ask my final question, “I suppose I can’t go on a rollercoaster either.”
 
I barely hear his answer.
 
“You are raining on my parade,” I say quietly, trying to laugh it off, but pouting nonetheless.
 
My doctor turns to the students, “I told you, this one would be interesting.”

 

 

Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

 

* If the bone drug is Zomera, it is a biophosphonate, which can cause osteonecrosis in the jawbone.