Medical Update -- Side Effects of Taxotere

This past Thursday, I got the Herceptin but no Taxotere, to give my GI (gastrointestinal) track a rest.

Next week, I will resume the Taxotere, but in a lower dose. Hopefully, the lower dose will resolve, or at least dramatically reduce, the GI upset (read: diarrhea).

The previous week, I took Loperamide (Imodium) almost daily to resolve the upset. It worked, but it would be better not to have any stomach upset. Apparently, in addition to the dangers of dehydration, there is some risk of infection associated with diarrhea.

I guess I expected this week to pass smoothly without the Taxotere. Unfortunately, this morning (day 3) I had an upset stomach again. I immediately took two Loperamide tablets.

I really feel rather sorry for myself about the upset stomach thing.

Isn't it funny the things that bother us?


Meanwhile, the neuropathy caused by the Taxol seems to have disappeared from my feet. I am not sure what is happening with my hands. My right hand feels ok, but my left hand feels sluggish. I cannot tell whether it is leftover neuropathy caused by the Taxol, or new neuropathy caused by the Taxotere. I think it is getting worse, which makes me think it is the latter.

With the Taxol, my fingers felt "pudgy." Now the whole hand just feels like it is not working right, like it is "slow" or "sleepy."

I think there is something wrong with my sense of touch.

In addition to the loss of dexterity, especially in my left hand, I have also lost strength in my hands (both of them). I still find it difficult to open bottles and often need to ask for help.


It took over two weeks for the cuts on my tongue to heal after I stopped the Taxol. The sensation has returned, though much milder. I drank lemonade and the acid did not make my tongue burn.


So far, none of these symptoms is enough to stop the Taxotere.


Meanwhile, I just submitted a request to the kupah (health fund) for a PET scan (PET CT). It has been six months since we last did a full scan to see what is going on inside my body.



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

With love and optimism,
RivkA

Medical Update -- Xeloda vx. Taxotere.... and the winner is....

We arrived a few minutes late... and there were no parking spaces... so we parked right in front of the hospital, in the spaces reserved for taxicabs. Who says there are no advantages to having cancer? With a tav neichut (handicapped parking permit) you can park almost anywhere!

We went in, paid and sat down to wait...

When my Second Opinion Oncologist (SOO) came out of her room, she was surprised to see us.

"I did not expect to see you;" she said softly.

When we said down in her office, she continued, "You did not need to come. I sent you an email..."

I explained that we, particularly Moshe, had more questions for her.

She repeated what we have heard before, both from my regular oncologist and others as well: there is no 'right or wrong' answer. Even though Taxotere is an excellent, and effective, chemotherapy, she does not like it so much because of its toxicity. She prefers Xeloda, which has much fewer side effects. That said, she understands why my oncologist recommended Taxotere, and agrees that it makes sense to try it.

She did suggest that if we do choose Taxotere, a full dose should be administered once every three weeks. My oncologist recommended that I receive the Taxotere weekly (1/3 of a dose per week), like I received the Taxol. Spread out, the side effects are less severe. My SOO ceded that the difference in efficacy was not that significant.

(She quoted a study that compared Taxol weekly, Taxol once every 3 weeks, Taxotere weekly, and Taxotere once every 3 weeks. She said that Taxol weekly was the most effective, followed by Taxotere once every 3 weeks.)

When our meeting ended, the SOO told us "there is no reason for you to come to me again; you have an excellent oncologist."

Then, almost as an afterthought, she added, "except, perhaps, after Tykerb. There are several new drugs that are coming out for HER2 cancers."

She suggested that when the time comes, her hospital might be involved in research that will be relevant to me.

As we left, she repeated that we can email her with questions and that we can rely on the judgement of my oncologist. Then, again, softly, she wondered that we had come.

I wondered if I had missed some sort of subtle message when we spoke on the phone. I do not think so. I just think she thought it unnecessary, and thought that was clear. I think she was being sensitive to the fact that it costs so much money to sit with her.

Nonetheless, as we walked out, Moshe expressed his relief at having gotten our SOO's opinion. He noted that had we not gone, he would have spent his nights, laying awake in bed, wondering if we had made a mistake about my treatment. When you look at it that way, we did not waste our time or money. It was worth it for his peace of mind.

And, just so we would take full advantage of being in Tel Aviv, we went out to China Li, a nice Chinese restaurant in Tel Aviv.



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

With love and optimism,
RivkA

Medical Update -- Doctor's Recommendations & Second Opinions

My oncologist recommending continuing with the Herceptin and switching from Taxol to Taxotere (rather than Xeloda) for two main reasons:

1. Taxol and Taxotere are both taxanes. Since Taxol was effective, it is reasonable to expect Taxotere to have similar results. Stick with what works.


2. Save Xeloda for when there is progression. Then we can use Xeloda in combination with Tykerb. Studies show those to be an effective combination.

This all makes a lot of sense to me.

Moshe wants a second opinion.

We have consulted several times with one of Israel's top oncologists, who specializes in breast cancer. Unfortunately, she is located in Tel Aviv and we can only see her privately.

I do not expect her to disagree with my oncologist. Even if she might suggest a different chemotherapy, I doubt she would advise against Taxotere. Taxotere makes so much sense as the next course of treatment.

I have been so tired since Pesach. I really do not want to schlep (drag myself) to Tel Aviv, not to mention shell out all that money. Each consultation with this oncologist costs 1,100 NIS! (I get half back from the kupah (health fund), but it is still a sizable chunk of money)

For his part, my oncologist is completely backing up my husband. Though he does not think a second opinion is necessary, he does think it is completely reasonable.

My doctor constantly emphasizes that "this is a couple's disease." He maintains that it would be wrong for me to have the attitude that "this is my body" and do just what I want. It is important that Moshe also feel comfortable and confident that we are doing the best we can to treat this disease.

Over the last few days, Moshe has read many articles about these drugs, and he has many questions. Not only is he interested in Taxotere vs. Xeloda, he is also interested in the combination of Taxotere and Xeloda. (thanks to A for sending us several relevant links, including this article).

Moshe, God bless him, is taking this decision very seriously. He does not want to be at all casual about my life.

I am not being casual about my life. I just know what I want to do.



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

With love and optimism,
RivkA

No Chemo for YOU! NEXT!! (medical update)

I felt lost and helpless.

My doctor reassured me that it was okay to skip this treatment. The chemo is working. That is not the problem. (The proof is in the pudding: my markers are on the LOW end of normal.)

It is the side effects that are worrying.

I did not think the side effects were that bad.

True, my tongue is really bothering me. I feel like I have cuts all over my tongue. Over the past few weeks, I noticed that my tongue started hurting about 2-3 days after receiving the Taxol; it healed a few days after that. This time, more than a week later, my tongue is still sore. I cannot eat any citrus fruit or even moderately acidic fruits (after eating two loquats, my tongue started burning).

In the past, I have felt tingling in my fingers and toes, but not recently. What I do feel, as I described to my doctor, is like my hands and feet are pudgy.

Now, my feet have been swollen for weeks, so it did not surprise me that they feel pudgy. But my fingers also feel pudgy.

My doctors asked if I experienced any difficulty with buttons or zippers. Since I rarely use them, I have not noticed any problems. I have noticed that I am dropping things a bit more than usual. But nothing too terrible. And a few more typos than normal. Again, nothing I can't live with.

My feet bother me the most. My feet and legs are really swollen and often feel quite uncomfortable. At times, walking is downright difficult. It is unclear to me if the swelling is related to my treatment or from some other cause.

My doctor is primarily concerned about the loss of dexterity in my fingers. He does not want to risk an increase in the level of toxicity that might have a permanent impact on my abilities to function.

He wants to see how my fingers and tongue feel after skipping a treatment.

Depending on what happens this week, he will either recommend a lower dose of Taxol or switching to a different chemo. He wants time to think.

I know that skipping treatment this time is not like the last time. The last time I missed a treatment, it was because the chemo no longer worked. This time, the chemo is working, but the side effects might be damaging.

I realize that missing one week of treatment will have no effect on my prognosis.

Still, it is an emotional blow. I feel like I am not doing anything to fight the cancer, like I am doing nothing.

When the doctor told me that we would be skipping today's treatment, I wanted him to wait, to slow down, to change his mind. I wondered what I said "wrong."

The doctor was patient. He explained everything.

Intellectually, I understood.

Emotionally, I still felt stunned, let down, all dressed up with nowhere to go....

I was about to leave when E, the woman who manages the bone research, asked where I was going.

I completely forgot that I still had to receive my bone drugs!



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

With love and optimism,
RivkA

Pesach Preparations

I am not talking about cleaning here.

I am talking about scheduling chemo.

Especially now, when I get chemo every week, I have less room to play around.

With my previous chemo (Navalbine/vinorelbine), I had greater flexibility. My blood counts were always good, so if I needed to, I could receive my treatments up to two days early.

Not so with the Taxol.

I can only receive treatments up to one day early.

Since I receive treatments on Thursdays, there is no option to receive treatments one day later. The oncology day ward is closed on Fridays and, of course, on Saturdays as well. (Hospitals in Israel are open and function on Shabbat, but only for things that cannot wait)

So, between my not-so-new-anymore treatment and my not-so-new-anymore chemo day, I am much more limited.

This year, the first day of Pesach falls out on Wednesday evening and Thursday. (Jewish days begin with nightfall on the previous day, and end with nightfall)

Most institutions in Israel give off for the day before a holiday, as well as the day of the holiday. Thus, the oncology day ward will be closed on both Wednesday and Thursday.

Since I can only move my chemo up by one day at a time, I had to plan in advance.

So, my Pesach preparations included scheduling chemo for this week on Wednesday, so I could receive chemo next week on Tuesday!

Phew! (just thinking about it all makes me tired!)

My next chemo day will be on my regular schedule: the Thursday after Pesach, Isru Chag (“the day after”), which is a regular day for most of the country, but is still a holiday from school kid.

I hate having chemo when the kids are still home, but at least it is after Pesach.

The nice thing about all these Pesach preparations is that I will have all of Pesach off. (YAY!)

V’Samachta B’Chagecha! (“And you will rejoice on your holiday!”)





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

With love and optimism,
RivkA

Chemo Day -- no more short days?

This past Thursday:

Got there before 9:30.

Didn't start treatment until at least 12:30.

Didn't leave until after 4:30.

It was no one's fault.

There is something wrong with my port -- it is supposed to support "two way traffic," but is currently working "one way only."

For several weeks now, the nurses have not been able to draw blood from my port. That means that every time I go for chemo, I get stuck with needles twice -- once to open my port, and a second time on my arm.

In the past, I did not mind so much, because the person who took blood was expert and did not hurt me. But he recently suffered a heart attack and, though he is doing well, he is still on leave. I am always anxious about new people drawing blood from me. I have difficult veins, and often suffer from pain and buising if the person who draws blood is not really good.

The woman who manages data from the bone study research arranged for me to seen by a doctor who, she assured me, was also good at drawing blood. The doctor drew blood (painlessly!) and also injected half a dose of urokinase into my port. Urokinase, a blood thinner to dissolves clots that might be in the port, has to be approved and administered by a physician.

The protocol is to wait at least an hour after the injection before using the port. It also takes about an hour for the results of the blood test to come back. That day's treatments (in this case the Taxol and the Zomera/Denosumab) are only ordered AFTER the blood tests come back okay.

Everything takes time.



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

With love and optimism,
RivkA

Chemo Day -- Herceptin: YES, Taxol: NO

Apparently, a "little break" is one week.

I received Herceptin today, but no Taxol. My next Taxol treatment will be next Thursday.

I was a little nervous about skipping the treatment, but my oncologist was pretty insistent. When I pressed him about it, he offered to give it to me if I was willing to sign a waver, taking full responsibility for any possible complications. I politely declined, to which he responded "I thought that's what you'd say."

So, I will focus on kicking this cold, which is pretty much taking up all my energy and then some.

I felt a bit better this morning, but by the time I got home I was wiped. I went straight to bed and slept for three hours!

At least I got the Herceptin. (This dose was the free dose provided by Roche)

We still hope to make an evaluation before I am due for my next dose, in three weeks.



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

With love and optimism,
RivkA

Cancer vs. The Common Cold

It occurred to me that having a cold might affect my ability to receive chemo tomorrow.

I emailed my oncologist, who wrote back: "come and we will decide tomorrow--sounds like you will get a little break"

What does that mean?

Do I have the nurses open my port as usual?

I am scheduled to receive both Taxol and Herceptin. If "we" (and by "we," I mean "he") decide to postpone treatments, do we postpone both medications? By how long? A few days? A week? What is a "little break?" (To me, a "break" would be at least a month! We know that is not happening, as we have already established (here) that we can not postpone the Herceptin by more than a week)

Last week, my doctor told me that we would evaluate the efficacy of my treatments in the next two weeks. How does postponing treatment affect our ability to evaluate if the drugs are working?

All these questions, just because of a stupid cold, from which, we agreed last year (see here), cancer patients should be exempt!

It seems that when push comes to shove, the common cold trumps the cancer card!



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

With love and optimism,
RivkA

Hair Today, Gone Tomorrow?

A week ago, after swimming, I sat in the locker room combing out my hair.... literally.

As I combed, more and more hair came out in the comb.

It took me a few minutes to realize what was happening.

A few weeks ago, I commented to my oncologist that my hair did not seem to be falling out and, perhaps, I would not lose my hair this time either.

"Don't count on it," he responded, matter-of-factly.

I still have not figured out what I want to do.

I am reluctant to just "shave it all off," since I have met women who did not lose their hair with Taxol.

Some women just lose the hair on their heads; others keep the hair on their heads but lose their eyebrows and eyelashes; other women lose both; some women lose ALL their hair (including the hairs on their arms and legs).

I had always thought that I would be one of those bold women who just shave everything off. You know, the "get them, before they get you" approach.

If I knew for certain that I would lose it all, then that is what I would do. But I don't.

So I am waiting is out. Holding on to what is left. And wondering, if it all falls out, will I ever have red hair again....


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

With love and optimism,
RivkA

Medical Update: Day 1 -- Taxol

I was noticeably anxious.

First, I overslept. I wanted to arrive early, and instead I arrived late. (It was not that bad, we arrived at around 9:20, instead of our usual 9:00)

Then, the nurses told me (and my doctor) there was no way that I could receive both Taxol and Herceptin on the same day because I would be there for over 10 hours (the oncology day ward is not open that long). I would need to take one drug today, and another tomorrow.

Great. (Not)

Today was the deadline day for taking Herceptin without a loading dose. Nevertheless, the nurse who handles prescriptions (who I highly respect) recommended starting off with Taxol, so there would be a full week in between doses. The doctor agreed with her logic, and thought the difference in waiting one day for Herceptin was insignificant.

The doctor explained that the delay would not negate the affect of the Herceptin; at most it would take longer for the Herceptin to build back up in my system. My concern was that the delay might affect our ability to evaluate the efficacy of the drug. I was especially unsettled because the Herceptin is being paid for by private donations, and I am highly sensitive about not wasting someone else's money.

The deliberations made me even more anxious. My doctor left the final decision was up to me; we would do whatever made me feel most comfortable. I did not know how to decide. Moshe suggested that, since I am not a "bureaucratic statistic," we follow the doctor's and nurse's instincts. I felt really stressed about the decision. The doctor looked directly at me, and gently suggested I relax. I looked right back at him and said "I am very anxious."

"I know," he responded, softly, "Relax. It will be OK."

He did not diminish my concerns. He acknowledged the many facets of this issue, and gave me the space to choose whatever path I preferred. I focused on my breathing and agreed to take the Taxol first.

When I went to open my port, the nurse took one look at me and asked "where is your smile?"

Afterwards, when I went to wait with a cluster of the "regular" ladies, there, too, several women asked me what is going on.

I did not realize my feelings were so easily displayed on my face.

I have been coming to chemotherapy for almost a year and a half. I often receive heart-warming comments welcoming me. After not seeing me, during the chagim (holidays), one woman told me that she really missed me, that I am like a ray of sunshine.

Today, when everything weighed so heavily on my shoulders, (the finances, starting a new drug, the overall uncertainty), I finally understood that I really did bring joy and laughter to the chemo ward.

One of the nurses came to tell me that I would need a bed. The head nurse had told me that last week, so I already staked out a bed when I first arrived. (another reason I wanted to get their early was that I know that beds are often taken quickly, and I did not want any hassles. "The early bird gets the worm" and all that... Thank God, there were several beds available when I arrived. I was even able to choose a bed in a room with two other women). The nurse hooked me up, and led me to the bed.

I was getting the first of three medications to prep me for the Taxol. The first was Fenergan, a super-duper antihistamine that totally knocks you out. The second was something to protect the digestive tract and the third was something to prevent nausea. Only after these three infusions would I receive the Taxol.

I had brought a book, but realized that the Fenergan made it impossible to concentrate on reading. I noticed a TV, thought I would watch for just a bit, to relax. The sound was off, as Moshe adjusted the TV channels. When we found a program I liked, we discovered there was no volume, even when Moshe raised the volume to maximum. We tried to find a program that I could follow the Hebrew subtitles (not easy for me, at all). When Moshe flipped through the channels again, we discovered that some of them did have sound, and maximum volume was LOUD!! Moshe immediately lowered the volume, but not fast enough! My roommates started yelling at us! (So much for relaxing!) We apologized profusely, as Moshe continued to mute the TV. Then, slowly, Moshe started raising the volume. At that point, one of the ladies (the daughter a patient), started yelling again! She needed complete quiet so that she could study! Moshe was even more taken aback than I. Very quietly, he asked me to ask a nurse to deal with this. When I related what happened to the nurse, she insisted that patient's needs come first. So Moshe raised the volume just barely enough for me to hear. The woman then started talking loudly with her mother, but I couldn't understand what she was saying since they spoke in Russian. It was probably better that way. (What was that about relaxing?)

I waited for the room to quiet down (I realized that if I raised the volume, they would just talk louder), when one of the volunteers from the Yuri Stern Foundation came in to offer me a massage (reflexology). By then, I was already feeling slightly woozy. When I started to get up, to go into the massage room, she said she would treat me in the bed I was in. Yeah.

We spoke a bit, before she started, and the subject came up about my teaching swimming. I could feel myself transform, just talking about it. The tension left my shoulders and I smiled. I could feel the spark return to my eyes. After a few minutes, she and I smiled. I could feel the spark return to my eyes. After a few minutes, she left to get her things.

She came in, closed the curtains and turned off the TV. It was so nice.

I was just starting to drift in and out of awareness, when my doctor came in. We spoke briefly, but I was already on my way "out." My speech was slow and it was difficult for me to focus. Thankfully, I did not have many questions.

The doc left, the massage ended, and I drifted off to sleep. I slipped in and out of sleep for the rest of the day.

My friend came around 2:30. I cancelled our "chemo date" because I was told that the Fenergan would put me to sleep. But she still came to pick me up and take me home. I finished around 3:00 and was home by 3:30.

I ate a late lunch with my kids, then collapsed back into bed until dinnertime. After supper, I thought I would just quickly blog something, then go to sleep. ("The best laid plans...."). I had two, separate, meaningful conversations, one with Moshe and one with Y. Both talks were really worthwhile, though my talk with Y was particularly special.

The Fenergan must be wearing off, because I am starting to itch. I'm still tired....

It's time to go to sleep.



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

With love and optimism,
RivkA

Anonymous Angels

Tomorrow, I start Taxol.

I am anxious about the side affects. But there is no way to know how I will react.

I am trying to remain open-minded and relaxed. Easier said than done.

Nevertheless, what will be, will be.

I will also be receiving Herceptin. Tomorrow is the latest that I can continue taking Herceptin, without needing a "loading dose." My health fund, Maccabi, denied our initial request for coverage.

I am putting together an appeal, which we will send to the ombudsmen of Maccabi and the Health Ministry.

Meanwhile, some anonymous angels are taking care of me, and making sure that I get what I need.

My regular dose is 570 mg, and Herceptin comes in 440 mg bottles. So I need two bottles tomorrow. Leftover Herceptin can be used for up to 4 weeks. So, in three weeks, I will need only one more bottle. Essentially, I need 3 bottles, for every 2 treatments. Each bottle costs 11,221.85 NIS (approx $2,805). (Herceptin costs even more at this government approved pharmacy, which sells drugs that are not covered by the health funds)

Several years ago, when I had the opportunity to purchase private insurance covering medications, I decided to forego that added expense. After all, I thought, how expensive can medications be?

Little did I know....



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

With love and optimism,
RivkA