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

Tummy Troubles

(from last night... I can't post from my bedroom. One day, we'll hook up that second router...)


My tummy is so sad.

No, not sad… upset.

That’s it.

My tummy is upset.

Apparently, Taxotere does not agree with my stomach.

They have been disagreeing with each other all week!

I do not have nausea… at least, nothing to get worked up about.

But I do have… well… I guess there is no way to say this nicely…

I have diarrhea.

(Those of you who know me can just pretend that you did not read these intimate details about my digestive tract)

What can I say? I have had a miserable day, most of which was spent in the bathroom.

I slept for several hours this afternoon and, when I woke up, I did not feel any better.

I sat down to dinner with my kids, but then I needed to excuse myself.

I asked my eldest to take care of cleaning up and putting her siblings to bed.

She had a teenage moment and quite articulately expressed her resentment about doing “my job.”

She was right. But what could I do?

Moshe was not home yet and I needed to go back to bed.

In the end, she did everything I asked.

I called her into my bedroom. She came right away and flopped down on her Abba’s (father’s) bed. When I asked her to do one more thing for me, she responded, rather dejectedly, “I thought you were calling me in to talk.”

Clearly, she needed some attention. (I may not always “get it” right away, but you don’t need to hit me over the head with a hammer!)

We started to talk about this and that and then I remembered. We needed to think of a name for our camp.

Now, our camp is a subject for a different post, but I will just share with you what happened while we were brainstorming.

We got the giggles.

Seriously!

You know how it is when you get the giggles…. You just cannot stop laughing.

Every silly suggestion makes you laugh even harder.

Well, we were rolling with laughter!

I answered the phone several times in the middle and I know we sounded quite loony! That just made us laugh even harder!

When we finally finished, we were both in really good moods.

Just then, my youngest came in, rather contrite.

My eldest, having received the attention she needed, gracefully exited the room and made way for her little sister.

I invited my youngest to sit on my bed and offered to comb out her long hair. There is something very nurturing about combing out hair. (I think my feelings about it stem from when I read Cheaper by the Dozen)

I tortured combed her hair for about 20 minutes, in the middle of which she apologized. (No need to elaborate about forgiven sins)

When I finished, and her hair was all shiny and smooth, and we had a nice reconciliatory hug. Then several more hugs, just because we love each other.

Lest you worry that my son was left out of all these good feelings, in between one of my trips between my bathroom and bedroom, I made sure to give him some positive feedback and get, of course, a nice good night hug!

Not too bad for a mom suffering from stomach problems.



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

With love and optimism,
RivkA

Medical Update -- fingernails and chest pain

OK, so I want to clarify something here: my concern over blue nails is not "cosmetic."

I have to ice my fingernails and toenails to keep them healthy. If they turn colors, that is NOT a good sign. If they are not well, they are in danger of infection or falling out or both. Not a pretty sight, and not something that a little nailpolish can fix.

Today, I met with my oncologist and asked him if the cold pack gloves and slippers were really necessary. He said they were mandatory (for all the reasons mentioned above).

They are not fun, but now that I know what to expect, I can deal with it a bit better.

That said, they are downright unpleasant.

On a happier note, I did not experience any chest pain from the Taxotere today. The drip was fairly slow, so that might have had something to do with it, but I do not know. In any case, I am cautiously optimistic that I will not experience any more pressure.

Chemo day was long today (9:40 am - 4:20 pm), but much better than last time!



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

With love and optimism,
RivkA

Only Because I Love You (i.e. why I posted instead of going to sleep)..... Medical Update: Taxotere (and Herceptin) -- The Next Chapter

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?”

“I am not sure;” he responded, “I think I want to do an Echo and check your heart.”

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!!



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 -- Xeloda vs. Taxotere

I tried to bypass the trip to Tel Aviv.

I emailed the oncologist and received an answer from her. She recommends Xeloda and Herceptin.

Because Moshe wanted an uninfluenced opinion, I sent her the minimal amount of information necessary to form an independent opinion. But now I had more specific questions.

I emailed her again, but did not receive an answer. So I called her with several follow up questions.

She was in the middle of seeing patients, so she was not available for a lengthy discussion. I managed to ask about Taxotere, and she repeated her recommendation to switch to Xeloda.

I wanted to ask her more questions, but she did not have the time or the patience. I asked if there was another time that I could call her. She was noncommital.

That is the only thing that I do not like about this doctor. The only way to consult with her is to come in person. It seems to me that we should be able to have a short phone consultation for relatively simple questions or, at least, a short correspondence via email.

It is clear that the only way we are going to receive satisfactory answers to all our (read: Moshe's) questions is to go in for a consult.

Moshe really wants to do this. I really do not want to. This is so ironic. I am going for him, and he is going for me.

Either way, we are both going to Tel Aviv tonight.

All I want to do is sleep. I forced myself to stay awake to call the oncologist when the secretaries said to call. (Then I had to argue with the secretary until she put me through, and then the doctor did not even really have time to talk with me!)

Now I can't sleep because I have to get ready to go see the doctor, because she did not have time to answer my questions over the phone, and she would not commit to talking with me later.

Oh, yeah, and did I mention that we had an appointment for 8:30 pm, but they moved us up to 7:30, which is NOT a good time for us?!?! (I hope I can sleep in the car!)

I am really trying to stay focussed on how important this is to Moshe.

I wish my two doctors would just talk directly with each other.

I am really inclined to take the Taxotere, for all the reasons I wrote in my previous post.

Moshe asked that I do not decide anything until I speak with the other oncologist. I am trying, but it is difficult.

Now, in addition to not wanting to spend the time or money getting this second opinion, I am worried that it will cause even more strife if Moshe and I do not agree on the next course of treatment.

...as if I did not already have enough stress in my life!

I HATE having cancer!



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