More Tykerb Tales

Well, after several more lengthy phone calls (I have notes on all of these, and will be writing about the experience soon), Medco agreed to send me the Tykerb that my doctor had ordered for me WEEKS ago.

Medco is the mail-order pharmacy that is part of my health insurance plan, WSHIP.

I'm not kidding. It took the pharmacy almost three weeks to fill my prescription. The various reasons they came up with to delay shipping this very expensive drug were quite ingenious. I don't think I could have come up with that many, myself.

Here's just one:

Medco Person: "WE have to call YOU to schedule delivery."

Me: "But I'm on the phone, now, talking to you. Why can't we schedule the delivery?"

Medco Person: "We have procedures."

Days go by ... The phone does not ring.

Actually, at that point, I wasn't taking that BS. I called again the next day, and the next, until the drug was on its way--but that was after three weeks of conversations like this one.

So my Tykerb arrived on Wednesday afternoon, the day before Thanksgiving. I decided to wait until T Day to start taking it. I figured that way I would never forget when I started the drug.

Tykerb is pretty amazing stuff: For one, the pills are a glowing, florescent orange. (Is that dye carcinogenic?) For two, I take five of these horse pills a day, all at the same time.

I have to take my dose an hour after eating, and then wait another hour before eating again. I think 10:30 a.m. is going to be Tykerb Time.

So far, I'm only experiencing one of the long list of possible side effects: diarrhea.

A week or so ago I e-mailed Dr. Livingston some questions about Tykerb, and he said diarrhea was common in his patients who are on it. I asked about hand-foot syndrome, because I've had that before and I hate it, and he said he didn't think that was all that likely, but that he was seeing a rash in his patients.

This rash wasn't on the list of side effects I had, so that's one more to add. Dr. L said it's usually on the trunk, and sometimes on the face. It can get pimply, and then you need antibiotics. If it's too bad, cut the dose on the Tykerb.

Anyway, so far the only side effect I'm experiencing, as I said, is diarrhea. Every day at about 3 p.m. Guess that will be Toilet Time around here. Those of you who have my phone number, please remember not to call at 3 p.m.

A New Regimen
So my new treatment regimen is Tykerb--which I'm calling Son of Herceptin, because it is a targeted therapy, as is Herceptin, but a better one in several ways. It crosses the blood-brain barrier, for example, meaning it can protect against brain mets, which Herceptin did not. Also, Herceptin can damage the heart, and I don't belive Tykerb does.

Also back on zometa, every six weeks by IV. Zometa keeps my bones strong and makes it harder for bone mets to progress.

I was supposed to go back on Avastin also. In fact, I had a dose of Avastin three weeks ago. But since I need to have another round of radiation therapy, I have to wait to take any more Avastin until I'm done with that. Apparently, Avastin and radiation therapy don't mix.

In fact, I have personal experience with this: Last December, I had three weeks of radiation to treat a tumor at T-11 in my spine. I was on Avastin (plus Herceptin and zometa) at the time, and the radiation therapy was really hard on me: nausea and diarrhea plus serious fatigue.

Turns out, this was in part a result of getting the Avastin, but the drug was so new, that doctors didn't know this yet. Now, not quite a year later, they do.

I'll Be Glowing Soon
On Monday I'll be starting my FIFTH series of radiation therapy treatments. I guess we go until I run out of body parts to radiate, because, I'm told, you can't radiate the same tissue twice.

I have little tattoos here and there to mark the boundaries of the areas that have been radiated: My chest (local recurrence, 1999); my right upper arm (metastases, 2002); T-11 (tumor moving toward the spinal cord, 2006); pubic bone and top of femur (painful mets and, I just found out last week, a fracture in the pubic bone, 2007).

Now, T-5 and T-6, plus the broken rib attached to T-6. (2007)

There's a pattern here, and I'm not sure I like it.

Read more:

The Scoop on Tykerb

Waiting for Tykerb...

Still Waiting for Tykerb ...

@ Jeanne Sather 2007.

Comments

[Sara]

You probably know this already, and the power of Tykerb may be stronger than this, but white rice is often good against diarrhea, and it's gentle and non-chemical. I don't know why it works. I have even been told by a conceivably creditable source that it is the Official Diarrhea Cure of the Israeli Army.

[jeanne]

That's funny about the Israeli Army, but I do know about white rice. Also applesauce (because of the pectin, I think ...).

Amazing the things we blog about! I thought about not mentioning the diarrhea, but then I thought, how can I tell only half the story? So, anyway, send me your bathroom jokes, folks. Poop jokes--is it 4-year-olds who love poop jokes?

[Kate Sullivan]

Hi
I've been living with B.C. with bone mets for over ten years now. My dr. put me on Tykerb with Xeloda; I was told the FDA only released tykerb if Xeloda was taken with it. It doesn't sound like you're getting the Xeloda; is that right?
Kate

[jeanne]

I'm not taking xeloda with it. I tried xeloda a year or two ago and I can't tolerate it. A certain percentage of women can't.

In any case, I'm not taking xeloda with the Tykerb. I don't know if that rule is still in place or not. I'll ask my doctor.

[Rebecca]

I know this is late... Herceptin causes TEMPORARY heart damage. Once the drug is stopped, any heart damage the body will naturally repair (in about 6 months max). That's part of the reason people can stay on the drug for so long. Now the damage from some of the other chemo drugs, not such good news...

[jeanne]

Really? I was under the impression that the damage was permanent. I'll ask one of my doctors about it.