Tummy Breaks

My stomach is just not happy.

My oncologist advised me to take a break from the drugs for a few days.

I have to be honest, I skipped the drugs this morning because I just could not deal with my upset stomach.

I am so wiped out that I had to cancel swimming lessons today!!  I just could not drag my sorry little *** out of bed!  I also worried that teaching in the hot sun might cause dehydration.  I really do not want to end up in the hospital, and I am losing a lot of fluids....  I am drinking all day long, but I do not know how much I am retaining.

I felt so good yesterday, and today I just feel like a wet dishrag!

I slept for several hours and still feel drained.

At least, I am catching a few extra moments with my girls!  (my son is on tiyul with sayarut)

My stomach feels so awful! (I have not even mentioned my cracked hands and mouth sores!)

I hate this!!


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

With love and optimism,
RivkA

Unnecessary Discomfort

I had an entirely different post planned for this evening!  I will, I hope, post it tomorrow morning.  It is just a short, but positive, post about a change in my focus. It will have to wait.

Right now, I want to complain. 

I am having stomach cramps and I am upset, because they were completely avoidable.

I ran out of Tykerb, because I could not renew my prescription, because my approval had expired, and my health fund would not even ORDER the drugs until my approval was renewed, so I had to wait even longer, and I ran out of pills. (you can read about this outrageous incident here)

So, for several days, I did not take Tykerb.

Well, my stomach must have liked the "rest," because it is really objecting to the fact that I resumed taking this medication.

I started taking Tykerb again on Tuesday, and my stomach has been wreaking havoc on me, ever since!

The Imodium/Stop-it helps with diarrhea, but it has not alleviated the terrible cramping.

I would not have been experiencing this if I had not stopped and restarted treatment.

I had stomach problems from the Tykerb before, but not like this.

I know it will go away.

My body will reach a balance, like before, tenuous as it seemed.

Meanwhile, I just need to breathe and relax and wait.

This, too, shall pass.



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

With love and optimism,
RivkA

Side Effects

I've lost 20 kilo (that's 44 pounds), thanks to the Xeloda. (read more here)

I look and feel better than I have in years. 

I told my oncologist, I want to stay on this chemo until I lose at least another 15-20 kilo!

It's a great drug; it "kills cancer and my appetite -- two for the price of one!"

I almost feel like I cheated.  I did not exercise, I did not diet.  The chemo removed my appetite, so I just did not eat.  It was not difficult.  If I ate even a tiny bit too much, I got nauseous. 

The chemo seems to have heightened my sense of smell, so that even the smell of food completely turns my stomach. 

In fact, everything turns my stomach.

It is not difficult to refrain from food when the very thought of eating makes you sick.

I did not suffer from lack of food, but my stomach... that's another story.

Loss of appetite, an upset stomach, hypersensitivity to smell, these are just the tip of the iceberg....

I am tired... all the time
My hands are dry; the skin by my thumb keeps cracking.  It hurts.
My feet are dry; sometimes a layer of skin just peels off my toes.  Davka (ironically), this does not hurt, but it is kind of freaky.
I am thirsty... all the time.
I have diarrhea, almost every day. (Apparently from the Tykerb, and not the Xeloda)
I have constipation, almost every day.
My stomach hurts, almost all the time.
I am frequently nauseous, even when I am hungry.
I have neuropathy.
I have no more strength in my hands or fingers -- I cannot open jars, bottles, or even plastic bags.
I have difficulty closing buttons and clasps.
I drop things.
I forget things.  (yeah, I forgot things before, but it's worse)
I am cold all the time (my oncologist says that's not connected to the chemo, but I'm not convinced)

Oh yeah, and I still have almost no hair.

As if that's not enough, I have another list of effects that are caused by the actual cancer:
My back hurts.
My ribs hurt.
It hurts if I stand too long.
It hurts if I sit on a chair that is not cushioned.
I am hypersensitive to touch.
It hurts when someone pokes me.
It hurts when my kids rest their heads on my shoulders.
It hurts when someone accidentally knocks into me.

I am in pain all the time.

I laugh about how pain is not such a big deal: "that is why God created pain killers."

But pain is a big deal... especially when you know that it won't go away.

I will spend the rest of my life "managing" my pain.

This is my life.

I deal.

But it is not easy.



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

With love and optimism,
RivkA

ps. Just so we're clear, if you read this and then look at me with droopy eyes, I will ban you from reading my blog!  (Empathy is fine, sympathy I can deal with, but pity is just not on the menu!)

Pain (Medical Update)

I have been feeling so tired lately, but I do not know if it is from the new chemo or still from the radiation. By this point, I suspect it is the chemo.

I can deal with being tired -- I just sleep and rest more. I've spent several days recently, just hanging out in bed. (...not very interesting blog posts, but what can you do...)

For the past few weeks, I have also had an increase in pain, particularly in my lower rib-cage.

My oncologist just gave me a referral for a full CT: head, neck, chest, hips and pelvis.

He wanted me to do it this week, but that is just too much for me. We have plans every day, and I just do not have the strength to spend a few hours in the hospital for a CT.

So, we compromised (read: he gave in) and I will have the CT after Succot.

(Note to well meaning family and friends: do NOT harass me about my decision. You will not change my mind and I will just get annoyed!!)

Meanwhile, for the past few days, I have been feeling some pressure (tightening) in my chest, around my sternum. It is probably just heartburn, but it is uncomfortable. I am going to check it out tomorrow.

This week, I only take the Lapatinib. It is my week off of Xeloda. I hoped to have a bit more energy (and appetite). We have a lot of fun things planned....



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

With love and optimism,
RivkA

The Chemotherapy Diet

Two years ago, on one of my first chemotherapy days, I noticed a woman weighing herself and commenting to her husband "I am disappearing," referring to all the weight she was losing.

My first, admittedly dark, thought was "halevai alai" ("I should only be so lucky").

I have been struggling with my weight since I am 14. Three pregnancies did not help.

In my case, neither did chemotherapy.

Despite periodic nausea, my appetite did not diminish. In fact, due to the steroids I was given as part of my treatments, I often had a greater appetite and increased fluid retention.

Combine that with lower physical activity, due to pain and/or exhaustion, and it is not hard to understand how I put on 10 kilo (22 pounds) over the past 2 years.

During radiation, I felt a slight decline in my appetite. More significantly, I noticed a dramatic increase in thirst. I assumed my eating and drinking habits would return to "normal" after I finished radiation.

But my habits have become even more extreme with the Xeloda.

For the first time in my life, I am just not hungry. I have very little desire to eat anything.

If, in the beginning of my new chemo regimen, I had a difficult time managing when I would eat vs. when I could take my various pills, I now have no problem.

When I wake up, I take the Tykerb right away, because I know that I will not be hungry anyway for at least an hour, if not several hours.

When I finally feel like something to eat, I will have a small meal and then take the Xeloda.

If I have a small enough "breakfast," I might be able to eat something small in the middle of the day.

However, more often than not, I will have a second "meal" later in the day, after which I will take my second dose of Xeloda. Then I am done eating for the day.

I rarely snack anymore. For the most part, the very thought of food makes me nauseas. Food has to be really good to entice me to eat.

On the other hand, I am thirsty all the time. I am constantly drinking water. If I don't drink enough, I get a headache.

If I did not have to eat before taking Xeloda, I would eat even less.

In the five weeks I have been taking Xeloda, I have lost 5 kilo (11 pounds).

Not a bad diet, if you need one....



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

With love and optimism,
RivkA

First Cycle: Xeloda & Tykerb (Medical Update)

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)

forgot to include: I have swelling in my ankles again. I think. It can be hard to tell.

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

With love and optimism,
RivkA

Chemo Pills (Medical Update)

So, it turns out that both Xeloda and Tykerb are pills.

On the one hand, this makes life a lot simpler. I no longer have to receive treatments via IV.

On the other hand, I have to remember to take pills, LOTS of pill, EVERY days. Blech!!

Have I mentioned how much I hate taking pills and how hard it is for me to remember to take them when I need them?!?!

I have to take FOUR pills of Xeloda, TWO times a day, between 20 - 30 minutes after I eat food.

I also have to take FIVE pills of Tykerb, once a day, an hour after I have eaten and an hour before I eat. I can drink water during those two hours, but nothing else.

I have to take Xeloda every day for 14 days straight; then I have 7 days without taking Xeloda. (Like all my other chemos so far, Xeloda is also taken on a three week cycle)

I have to take the Tykerb EVERY day, with no breaks.

It feels like the last few days have revolved around when I am taking my pills.

I get up, eat something, wait 20 minutes, take my Xeloda pills, wait another 40 minutes, take my Tykerb pills, wait another hour, then relax for several hours. In the evening, I eat dinner, wait another 20 minutes, take my Xeloda pills, feel relieved that I remembered all my pills that day, and relax until the next morning. Repeat.

During the week, I fill in a chart, including the times that I am taking the pills. It is actually comforting for me to fill in the chart, because then I know that I am not going to get confused about whether or not I took my pills.

With all the focus on timing and food, it is hard to forget.



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

With love and optimism,
RivkA

Treatment Plan (Medical Update) -- Radiation

The tumors are small, so I do not need surgery, thank God.

We will switch chemo treatments, most likely to Xeloda and Lapanitib. We are still awaiting approval from the health fund. In any case, we will not start a new round of chemo until we get the results from the PET scan that I am having this Tuesday.

The first round of treatment will be radiation.

On Sunday my oncologist called to tell me he made an appointment for me to begin radiation therapy on Tuesday.

Things were moving quickly!

I read up about radiation options (at BrainMetsBC.org) and liked the idea of stereotactic radiosurgery (SRS) (not really surgery, since they do not cut into your brain) -- they pinpoint the exact area of the tumor and bombard it with high doses of radiation. There are less side effects from SRS than from whole brain radiation (WBR), though WBR is often recommended in addition to SRS.

On Tuesday, the onco-radiologist who met with us (Moshe came with me), explained that I have too many tumors for any of SRS procedures (Gammaknife, Cyberknife, or Xknife). She patiently showed us the images of my brain, and pointed out the tumors. We counted 8 or 9 tumors.

She told me that, after consultation with the head of the department, they recommend WBR, for 20 treatments. I did not want WBR, and asked to speak with the head of the department.

Since I would need WBR, even if I also received STS, I went for the "simulation" while waiting for the department head to return to the department.

The "simulation" is where they set you up for radiation. There is a special machine they use to mark exactly where you will receive radiation. In my case, the set up included making a mask of my head to hold it in the same place and position.

I closed my eyes and the technician placed a warm mesh mold on my face and pulled it down over my head. I held my head still as the mold cooled and formed a hardened mold. I had purposely left my mouth open for easier breathing, but as the mold cooled it pulled my jaw closed so only a small opening was left. I worried that I would not be able to breath easily. The technician assured me that if I found it difficult to breath, the technicians could cut open the area of my mouth.

Then I left to wait for the department head.

There was another woman waiting already and then another couple joined us in the waiting area. Realizing that he might not know to call us in, I returned to the technician to ask how he would know that we were waiting for him. She told me she would let him know.

Good move!

We were the first ones called in.

The head of the department patiently and kindly explained to me, again, the reasons for recommending WBR, primarily because I had over 3 tumors. He also showed us the largest study comparing tumors treated with and without STS and read the summary to us: STS is dramatically effective when there is only one tumor. When there are 2-4 tumors, STS is still significantly effective. However, there is no evidence that STS improves recurrance or survival rates when there are more than 4 tumors.

He did not rule out the use of STS in the future, but certainly saw no benefit at this time. He is one of the top radio-oncologists and his position is consistent with the literature. He did not rush us and answered all our questions, even the ones we repeated from different angles.

I would begin WBR treatment on Thursday.

That first week, I would also receive radiation on Friday. Then I would receive radiation every day, Sunday through Thursday, for a total of four weeks (20 treatments).



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