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?

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…

I have been chastised for not posting this week.... I don't know that I have any cancer related news, but everything else is going well. School ended for the kids. Wed. was the last day for high school, and Fri. was the last for elementary. Matthew just finished his first year of high school and seems to have a nice group of friends he gets together with sometimes (and plays x-box online with all the time!) Em just finished 5th grade, her last year of elementary school.

She'll be starting at the middle school around the corner in the fall. Transportation will be easier -- but it's a big transition because no one from her elementary school will be going there, and the neighborhood friends she has are there already -- so they won't be in her class. As if there weren't enough changes going on in her life -- but she chose to leave the bilingual school system, where most or at least many of her schoolmates will be going. She and I are planning to work on Spanish at home.... wish me luck with that!

The other thing going on is that nothing is going on. For the summer. I didn't sign the kids up for anything. It's a bit of a story but basically she went back and forth with a friend about what to do and didn't come to a conclusion before my diagnosis, and after that it took a back seat..... and now it's summer. Good thing Mom is here -- for half of it, anyway!

I did find out something yesterday that worried me actually. Anecortave acetate, the eye medicine that is supposed to be the plan in case my pressures go up with the decadron I'll be using with taxol starting in mid July, is not a sure thing. I mean, it's sure that it will work (if I get started using it in time), and it's safe, at least for my left eye. (It might mess up the surgery in my right eye, but the surgery in my right eye makes it less likely that it will be needed.) However, i just found out that my doctor will have to get approval from both the company and the FDA for this because it's not what it was studied for, and would be considered a "compassionate use." Though it seems to be a no brainer that this is totally necessary and important, I hear that it might not be approved for use for someone with breast cancer.

So what the hell do I do if it isn't? I need to get in touch with my eye doctor on Monday and make sure he is applying for approval now, and that he makes a nice convincing case -- which frankly I think it is! However, if there is a chance it might not be approved I need to have a plan B, so I need to ask him what else he can think of. Though decadron increases eye pressure in only 30% of people (higher risk for people with glaucoma) statistics will be small comfort if I start losing my vision.

Hershey Park....

I'm okay but my white counts are down. I can't be around anyone sick actually. Emily has a class trip to Hershey Park in PA on Monday and i had planned to go. (I paid $40ish for a seat.... the discounted price!) However, I spoke with my case manager today after my MD saw my blood counts from yesterday, and she really doesn't think it's a good idea. I mean i could bring some purell and sanitize my hands all the time, but it's still over an hour each way on the bus full of 5th graders..... Emily is extremely disappointed and upset.

I can't think how i will be able to make it up to her but i think it would be stupid to risk it. Having said that i'm not the most comfortable about her being all the way over there at an amusement park without anyone looking out for her specifically..... her emotions are the most likely casualty, but of course i have images of feet being sliced off on a ride. (Where was that that that happened just a month ago?) I know i couldn't prevent it if I were there, but I sure would like to be on hand if something were to go wrong!

I did think I was catching a cold yesterday & the day before. I had sat in a concert at Em's school for an hour, in front of a woman who was coughing.... it didn't sound like she was covering her mouth, either. I thought i was far enough from her, but then i woke snorky and sneezy two days in a row, and was tired yesterday -- my mom's been getting up with Alan and the kids and letting me sleep in, and since then i'm rarely tired now. I started taking Cat's Claw right away (an herb -- unicaria tomentosa is the latin name.) It's known for helping immune function & my oncologist okayed it. People with HIV really like it & I read that it's helpful for side effects of chemo, and i know they don't mean nausea in this case! I think i kicked the attempting cold -- but maybe should take cats claw for another day or so just in case, given the still-dropping white counts. (The 2nd week after chemo is the low point -- I had chemo just a week ago yesterday.)

The warm weather is helpful, I must say. I worry more about being indoors in the AC. I skipped swimming yesterday when i was tired and worried about the cold thing -- but I biked today and Wednesday; there's been no problem about biking in the heat!

Anecortave Acetate

Forgot to mention this before -- when i saw my ophthalmologist on tuesday this was his idea for how to address any elevation of intra-ocular pressure (IOP) due to the steroid decadron which i will have to take before the chemo taxol, which I will start in mid July. Anecortave acetate is in injection rather than an eye drop, but should last a month or longer, so i might just need it once or twice.

It might take a month or so for the elevated IOP to show -- but my eye doctor says it should go up gradually, so I made an appt. to see him at the end of July. Now I just have to figure out how to convince him to just give me the durn injection(s) without my having to either go back to see him every week or two and/or risk irreversible vision loss from pressure elevation. I've googled and googled, and can't find any problems with it -- in fact it looks like it might work for regular glaucoma related pressure elevation, not just steroid induced. However, I know he's a little worried it might mess up the eye surgery done in 1999 in my right eye..... I don't know if that is a real concern or not.... or if maybe i should go to Boston to have it done. (My eye doctor here is very good, but my Boston eye doctor is the best.) I have written her (my Boston eye doctor, who did the surgery in my right eye) with some of these questions.

3rd chemo treatment

Yesterday i biked both to and from georgetown for chemo, and the biggest obstacles were the trees that had fallen on the path in the previous day's storm. Really they were quite impressive. One I could walk around (in the mud, because it covered the whole bikepath.) That's the one that was gone by 4pm when I was on my way back. The other two were so big and blocked so much of the path and surrounding grass that I either had to lift my bike between the trunk and branches (I had help -- it was the heavy bike!) or leave the path and ride in the adjoining parking lot. (That was on the way back -- joan thought of it.)

The nurse was great this time, and the doctor sent up instructions.... i think the instructions said to infuse the cytoxan over 2 hours rather than at a rate of 100 ml/hr, which is closer to 3 -- but the nurse listened to me and set it for 100 ml/hr, thank goodness. I will make sure I get those instructions written clearly next time in case i get a different chemo nurse. The nurse came by at one point and asked if i wanted it sped up -- but i did feel the beginning of symptoms; they just didn't get worse. She suggested i take an ativan (an antinausea med -- I had brought some, thinking i might need some onthe way home.)

I hadn't thought of taking one during the chemo before because the beginning symptoms don't feel like nausea is where they are headed -- but the doctor had mentioned, when i'd described them to her, that that is what they are.

I haven't eaten yet since i got back though. i have this wonderful lunch sitting in the fridge -- really it was last night's wonderful dinner, for the rest of them. I'm going to go have mine!

doctors & steroids & glaucoma

I guess I've been delinquent in not posting lately. There hasn't been much new, but I guess there is some.

I did finally get that yeast infection taken care of, with an additional 5 day course of diflucan. At least I think it's taken care of... .it's still somewhat itchy, but compared to how it was it's hardly worth mentioning. My primary care doctor called me at home to check on me -- so I was able to tell her that my oncologist wants her to be in charge of managing side effects of chemo, and she said okay -- that was nice to get clarified.

Then my oncologist called me at home, a few days later! That was really neat, because she's been hard to catch. She was great about both my need for her to write instructions on the slower infusion and the plan for the taxol (next chemo, starting in mid July.) The taxol will be complicated because I will need to use a steroid in order to tolerate it in its alcohol base. I had hoped to use abraxane instead, which is the same medication in an albumin base -- which would eliminate the need for steroids. However, it has only been tested on metastatic breast cancer (stage 4.)

The medical oncologist we saw at the Mayo thought it was a no brainer that abraxane would work fine, since it's the same medication as taxol, just in a different base -- but my oncologist at Georgetown is not so comfortable with it. She says there have been too many times when a medication that was sure to work just as well didn't, and she doesn't want to risk it.

The issue with steroids is that they increase intraocular pressure (IOP.) I have glaucoma, and I have just enough damage that I have lost the buffer... the overlapping vision that both eyes see.

Close one eye and look at the nose of a person accross the table from you. Then close the other eye. YOu see how you can see their whole face either way, plus a lot of background? All the stuff you can see with each eye is what I'm referring to as "overlapping vision" -- or the "buffer." And BTW when I do that eye thing I'm describing to you, with my right eye, I generally can't see the upper left hand corner of the person's face -- left from MY point of view, their upper right corner.)

This is why I'm so serious about avoiding steroids...... I have lost just about all the vision I can lose while still being able to maintain my field of vision (with both eyes open :-) So, while I want the chemo to have the best chance it can of killing all the cancer cells it can, if this can be managed without causing any further damage to my vision, I would really prefer that. But who knows? And I really want all the cancer cells GONE! Then once they are dead, the surgeon can remove them too. Dead and deader -- the cancer, not me.

Anyway it will be a process. I have been in touch with my Boston ophthalmologist (one of the world's best doctors) and will see my local ophthalmologist on Tuesday. (He's good too, and will work with my BOston doctor on it, and my oncologist.) I think what will happen is, I will start the taxol and take decadron (the steroid in question) and have my IOP (intraocular pressure) measured and see if I can continue it or whether I need to switch to abraxane..... However, I would like to plan ahead on what to do for my eyes if my pressure goes up (it won't drop immediately upon stopping the steroid.) In fact what i'd really like to do is do some of that ahead of time, preventively.

For example -- maybe I should go to Boston for another eye surgery. (The last one was in 1999, and only in one eye, which should be less susceptible to the effects of the decadron because of it.) Haven't discussed this with Dr Mx yet (Boston MD) or Dr W (local eye dr.) OR Dr. L (oncologist.) So for the moment that's TBD.

So this week I have an eye appt on Tuesday and an oncologist and chemo appt on Thursday. I doubt I will need to go back for neulasta on Friday, though. My white count was UP as of last Friday. I'm actually a little concerned about it because it was over the top of the range.... (12.3 -- the range being 3.6-9.6.) Maybe all that water I drank at the last chemo infusion washed the chemo away before it could work!? I haven't lost my head stubble yet -- if that's any indication. I don't have to shave my armpits anymore, though, and those chin hairs I used to pluck have stopped coming back. (Finally some good side effects!)

Maybe I'm just really sensitive to medication, and the one neulasta shot was so effective for me that the white count kept going up even during that week when my white count is supposed to drop? The only other idea I have is that fighting the yeast infection made it go up. I don't think I have any other infections going on..... you would think I'd notice an infection in my body -- but I didn't notice the cancer.....

The only other news is that poor Mom got sick again, this time a stomach thing. I think it was food poisoning -- she ate week-old leftovers that had been packed up in a restaurant from Em's plate. (I should have stopped her....) Matthew had half of them, and of course he's fine. But if Mom ate the part that had saliva on it -- that would have decayed faster. I just can't think where she would have picked up a stomach bug; she's been around no one but us, and stomach bugs are not airborn like colds. YOu have to share food or at least have some kind of physical contact...... She seems much better this evening -- but it sure hit her suddenly yesterday afternoon!