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Saturday, June 28, 2008

neulasta headache -- and the eye med story

All day I've had this headache. I've tried everything except caffeine to kill it and still it lives. I finally googled "neulasta headache" and sure enough headaches are a known side effect of neulasta, which I had a shot of yesterday. I thought maybe the nurse who'd given me my first neulasta shot had said that headaches were a side effect, but I wasn't sure. (Yesterday was my 2nd. The first shot was 6 weeks prior.) Good thing I wasn't having adriamycin & cytoxan every two weeks; neulasta is routine on that schedule. Hope I don't need to do it too often while I'm on taxol.

On that note, here's what I found out about the eyes, and steroids. The info I posted last came from my Boston eye doctor, who is the best, but who I don't see that much anymore, for obvious reasons. She does answer my emails, though, which is nice, so she's kind of a 2nd opinion. The last email she sent me was after she'd met with my local doctor, who was there visiting. I have since spoken with him on the phone. The news is better, but not as good as he'd led me to believe the first time he told me about anecortave acetate. Maybe he just doesn't realize how carefully I need to plan ahead.... because he sure does seem to want to help.

He's an investigator in the anecortave acetate study, so it's no problem to get me into it, if I qualify. My right eye won't qualify because of the filtration surgery I had (in 1999 or so.) That surgery will also decrease the likelihood that it will have a pressure spike. In order for my left eye to qualify my pressure will have to go up to 24 in that eye. (Normal eye pressures are 10-20, and mine, because of all the damage they have already, need to be kept in the mid teens or better. The pressures have been really well controlled for the almost 20 years since I was first found to have glaucoma.) That's the good news.

The bad news is, it's a double blind study. I would have a 1 in 4 chance of getting no medicine at all. (The other 3 are different doses of anecortave acetate.) I would see the doctor again in a week to see if my pressures are going down. If they are they should stay down for a good 5-6 weeks. I might potentially need to get it twice while I'm on taxol -- I don't know if they will give me the drug for sure the 2nd time if I respond well the first time or it's still the double blind study --forgot to ask that. (Maybe my pressures won't go up til I'm halfway through the taxol, or not at all.)

So...... the question is, if my pressures go up, do I go for the study, or try another drug instead, which I could be sure I'm getting? That one is probably an eyedrop used a couple of times a day. (There is ONE glaucoma med that I haven't tried yet that I'd be willing to try.) It's not specific to steroid induced pressure spikes, just a regular glaucoma med....

If my pressures go up and nothing that we try works to bring them down (even if I got a placebo instead of anecortave acetate) I will have to switch chemo from taxol to abraxane, which is the same medicine without needing me to take a steroid, and which should theoretically work just as well but has never been tested on people with my stage breast cancer. (It's approved for use in metastatic breast cancer.)

So, any opinions? I want to have a plan of action before I find myself sitting in the eye doctor's office with high pressures...... What would you choose? OR -- how about door #3. Anyone heard about anything alternative for lowering eye pressure? Is there an acupuncture technique that works?

Friday, June 27, 2008

Last doses of Adriamycinn & Cytoxan

I had my 4th chemo infusion yesterday -- and my last doses of adriamycin & cytoxan. I had a good nurse again, and the cytoxan was administered over 3 hours, so I was fine. I brought some home made sorbet so I wouldn’t have to eat their gross ice. Of course it melted despite my and Joan’s best efforts, so I had to eat some ice with it anyhow… However, I was able to bike home and even to eat a little dinner. And here’s a curious thing -- I was less nauseous this am. Could it be dinner?

I even swam a little this afternoon ---as Emily wanted to go to the pool.

I start taxol in 3 weeks, which I will get weekly for 12 weeks. I'm nervous about my eye pressure. I have news about that bbut I’m going to cut this short because my keyboard is driving me nuts. Probably time for a new one…