I got a prescription for xalatan today, for my left eye only. My eye doctor didn't think the pressure was all that impressively high, but he could see that I didn't want to wait around so he gave me the prescription. This medication sometimes causes eye color to darken over time, but my other doctor (from Boston) told me that that usually happens after 6-18 months on it, and I will probably use it for maybe 3 months while I'm taking taxol, so it shouldn't happen in the short time I'm on it. (It's also only in one eye......)
This was very reassuring to me to hear. You would think that in the scheme of things I would let go of my eye color, but I find that I am unwilling to do that. I feel fine about being bald, though I did love my hair (in fact, no wig tempts me because my hair was so much better than almost all the other hair I've seen) and I seem to be all right with the thought of losing the right breast, too, under the circumstances. But my eyes are green!
Tuesday, July 29, 2008
Friday, July 25, 2008
decadron causes eye pressure to climb
So I've had two taxol treatments now. Yesterday's wasn't any harder than the first one. I got half the steroid I had the first time (10 mg rather than 20) since I had no trouble the first time. This time they gave me the benadryl first, so I didn't get a buzzy feeling with the steroid, which was nice. Still I don't like the benadryl feeling, though -- but it's not that big a deal.
My eye pressure seems to be going up in the left eye, though. I don't see my eye doctor til next week (Tuesday -- unless I can get them to fit me in Monday am instead) but it just so happens that Matthew had broken his glasses, so I took him to get a checkup at his local eye doctor on Tuesday & put in an order for glasses, and somehow the doctor ended up offering me a free pressure check. It was a little high in the left eye then (high teens), but that could be consistent with normal variation. He said I could get it checked again when I picked up Matthew's glasses.
Well I got the call yesterday that Matthew's glasses were in and convinced Matthew to wait til today to get them, so I could take advantage of the free pressure check 24 hrs after my 2nd taxol treatment. Well today the pressure was 20-21 in the left eye, which is clearly too high. (The right eye is still 13-14; it's somewhat protected by a trabeculectomy -- a surgical procedure I had done in 1999.)
I may have mentioned this before -- but normal eye pressures are 10-20; however, for a glaucoma patient with the level of nerve damage I have, the pressures need to be kept in the low teens. So -- if I had a bottle of xalatan I'd start it now! (I didn't get that far in my planning ahead..... so I'll have to wait a few days..... Leave it to me to get enough of a pressure increase to do something about on a Friday afternoon!)
My eye pressure seems to be going up in the left eye, though. I don't see my eye doctor til next week (Tuesday -- unless I can get them to fit me in Monday am instead) but it just so happens that Matthew had broken his glasses, so I took him to get a checkup at his local eye doctor on Tuesday & put in an order for glasses, and somehow the doctor ended up offering me a free pressure check. It was a little high in the left eye then (high teens), but that could be consistent with normal variation. He said I could get it checked again when I picked up Matthew's glasses.
Well I got the call yesterday that Matthew's glasses were in and convinced Matthew to wait til today to get them, so I could take advantage of the free pressure check 24 hrs after my 2nd taxol treatment. Well today the pressure was 20-21 in the left eye, which is clearly too high. (The right eye is still 13-14; it's somewhat protected by a trabeculectomy -- a surgical procedure I had done in 1999.)
I may have mentioned this before -- but normal eye pressures are 10-20; however, for a glaucoma patient with the level of nerve damage I have, the pressures need to be kept in the low teens. So -- if I had a bottle of xalatan I'd start it now! (I didn't get that far in my planning ahead..... so I'll have to wait a few days..... Leave it to me to get enough of a pressure increase to do something about on a Friday afternoon!)
Thursday, July 17, 2008
Taxol
Today I had my first taxol treatment and it was fine. The benadryl bothered me, though, so I took a lorazapam, which made me sleepy. (Next time I will plan to skip that part, because that was the feeling that lingered.) I might have some pain from the taxol for 24-48 hrs starting anytime in the next 5 days. I didn't love the feeling I got from the decadron either -- but I will get a half dose next time; that was the deal, for my eyes. (They will watch me to make sure I'm good with the taxol.) Frankly I was astonished that after the decadron (which felt iffy) and the benadryl (which felt bad) the taxol was fine.
Meanwhile I have been riding. I biked 70 miles between tuesday and Wed, but most of the tuesday ride was with a slower bunch of people so it wasn't as good, workout-wise....... so when I took Mom to the adult swim hour at the pool that evening I swam a mile, too. I had thought I would not be able to ride tomorrow, but I feel alright -- just sleepy. It's an early ride, so maybe if I get to bed soon....... Early rides are hard on the sleep, and it feels too bad to miss out on sleeping in on a summer day when no one has to be at camp -- but it's also the best time to ride because it's cooler.
I have completely given up wearing a scarf under my helmet. It's just too hot -- and the sweat cools me INSTANTLY with no hair in the way!
I think Mom is starting to feel like she's getting ready to be home again..... which is too bad because I have really been enjoying being able to go on bikerides as much in the summer as in the non summer, this year since she's her paying attention to the kids. They don't need me to be home in order to be safe at their age (especially not with Pinky here -- Pinky even goes and barks at them if they have a fight!) However, they feel blown off if I'm off having a great time and they are stuck here doing.... what? And I can understand that. However, they don't want to go out and do something together either.....
I think Mom is tired of hanging out with Em while I go on a bikeride every morning, though. (Matthew's here too but he sleeps in, having stayed up all night.) This morning I actually tucked him in after I got up. I was up at 7 because I had to be at Georgetown for an appt. at 9. Usually I sleep in like Matthew -- just not that late. I'll sleep til 10-11, and he'll sleep til, gawd, 2-3!
I know, I'm a sucky parent with completely different standards for my two kids. Heard it! Never mind that they are very different kids......I'm still messing up their upbringing, somehow. Many hows. They know I love them, though, even if most of the dinners I make are only slight variations on the same theme. They can ask sexual questions freely, and do -- though Matthew's clammed up lately, as they do with the opposite gender parent when they hit puberty. (I hope he managed to get all the important questions in first!) These days they are asking questions about cancer, too, but not so many. I talked with them about it openly at first -- and now occasionally I do after an appt. But I get the feeling that they don't want to hear about it so much -- that they would rather pay attention to the fact that I seem pretty much like my usual self, and try (as usual) to get my attention for their needs. Which isn't quite what I had in mind for the summer, though it's reasonable, I suppose.
I have an eyebrow pencil now -- because my eyebrows are thinning. I am expecting to lose them completely, as well as the lashes, and the pubic hair. All that has thinned. Leg hair is thinner too -- it OUGHT to go with the taxol! If it doesn't I'm leaving it on.... I just can't see shaving my leg hair off when all the rest of my hair is falling out.
Meanwhile on the eye front -- I have an eye appt a week from Tuesday, and a plan about which med I am going to start if my pressures seem to be going up. (Or maybe I could start it anyway........ not sure if that would be protective or not.) At any rate I am happy to have a plan, and happy to be moving forward -- perhaps with no major impediment! Though there is still that pain that might hit. There will probably be a cumulative effect, too.......
As long as the tumor shrinks. Not sure how long I have to wait to see if that's happening..... I'm sure tonight is too soon, but after 2 weeks? Three? ????
Meanwhile I have been riding. I biked 70 miles between tuesday and Wed, but most of the tuesday ride was with a slower bunch of people so it wasn't as good, workout-wise....... so when I took Mom to the adult swim hour at the pool that evening I swam a mile, too. I had thought I would not be able to ride tomorrow, but I feel alright -- just sleepy. It's an early ride, so maybe if I get to bed soon....... Early rides are hard on the sleep, and it feels too bad to miss out on sleeping in on a summer day when no one has to be at camp -- but it's also the best time to ride because it's cooler.
I have completely given up wearing a scarf under my helmet. It's just too hot -- and the sweat cools me INSTANTLY with no hair in the way!
I think Mom is starting to feel like she's getting ready to be home again..... which is too bad because I have really been enjoying being able to go on bikerides as much in the summer as in the non summer, this year since she's her paying attention to the kids. They don't need me to be home in order to be safe at their age (especially not with Pinky here -- Pinky even goes and barks at them if they have a fight!) However, they feel blown off if I'm off having a great time and they are stuck here doing.... what? And I can understand that. However, they don't want to go out and do something together either.....
I think Mom is tired of hanging out with Em while I go on a bikeride every morning, though. (Matthew's here too but he sleeps in, having stayed up all night.) This morning I actually tucked him in after I got up. I was up at 7 because I had to be at Georgetown for an appt. at 9. Usually I sleep in like Matthew -- just not that late. I'll sleep til 10-11, and he'll sleep til, gawd, 2-3!
I know, I'm a sucky parent with completely different standards for my two kids. Heard it! Never mind that they are very different kids......I'm still messing up their upbringing, somehow. Many hows. They know I love them, though, even if most of the dinners I make are only slight variations on the same theme. They can ask sexual questions freely, and do -- though Matthew's clammed up lately, as they do with the opposite gender parent when they hit puberty. (I hope he managed to get all the important questions in first!) These days they are asking questions about cancer, too, but not so many. I talked with them about it openly at first -- and now occasionally I do after an appt. But I get the feeling that they don't want to hear about it so much -- that they would rather pay attention to the fact that I seem pretty much like my usual self, and try (as usual) to get my attention for their needs. Which isn't quite what I had in mind for the summer, though it's reasonable, I suppose.
I have an eyebrow pencil now -- because my eyebrows are thinning. I am expecting to lose them completely, as well as the lashes, and the pubic hair. All that has thinned. Leg hair is thinner too -- it OUGHT to go with the taxol! If it doesn't I'm leaving it on.... I just can't see shaving my leg hair off when all the rest of my hair is falling out.
Meanwhile on the eye front -- I have an eye appt a week from Tuesday, and a plan about which med I am going to start if my pressures seem to be going up. (Or maybe I could start it anyway........ not sure if that would be protective or not.) At any rate I am happy to have a plan, and happy to be moving forward -- perhaps with no major impediment! Though there is still that pain that might hit. There will probably be a cumulative effect, too.......
As long as the tumor shrinks. Not sure how long I have to wait to see if that's happening..... I'm sure tonight is too soon, but after 2 weeks? Three? ????
Sunday, July 13, 2008
Eye Plan!
Well it turns out that the World's Best Eye Doctor is still in my corner, even though I moved away and haven't been to her office in something like 2 years. She thinks I would do well with Xalatan, Travlatan, or Lumigan, in case I have a spike from the decadron. I will have some eye redness, and I might get headaches, but they should work -- and I should be able to stop using the drops after I'm done with the decadron (early October) or soon after.
I have put Alan on the job of researching these meds -- but basically I trust this doctor. Besides, I remember talking about Xalatan with her years ago, and it sounded fine except for the possibility that it might darken my eye color over time. I have to confess that I am still vain enough that I would prefer to keep my eye color..... though the possibility of losing it kinda pales in comparison with the possibility of losing more eyesight, or how about my life...... However, Dr M says that the darkening happens over a period of 6-18 mponths, if it happens, and I would probably need to be on the drops for 3 months maximum, so I'd likely avoid that.
If you live in the Boston area and need a fabulous eye doctor, ask me and I will point you in the right direction. She might be a glaucoma specialist -- but I think basically she's who you want to go to if you have enough going on with your eyes that you need someone fabulous.
My oncologist has been really helpful about this too. Last Thursday, when I was still trying to make a backup eye plan, she said that if I needed to go to Boston for surgery in my left eye I could take a week off before starting taxol to do it. Turns out it's not necessary, but I really appreciated her offering the suggestion -- and the fact that she understands that I am probably capable of creating an eye pressure spike just by worrying about not having a good plan.... not to mention her observation that now is a fine time for surgery since my white blood count is through the roof at the moment. (I had a shot of neulasta 2.5 weeks ago to boost it. It kind of overcompensates.) She also said she is planning to try giving me half the amount of decadron that she usually gives people before taxol. I hope it works!
I have put Alan on the job of researching these meds -- but basically I trust this doctor. Besides, I remember talking about Xalatan with her years ago, and it sounded fine except for the possibility that it might darken my eye color over time. I have to confess that I am still vain enough that I would prefer to keep my eye color..... though the possibility of losing it kinda pales in comparison with the possibility of losing more eyesight, or how about my life...... However, Dr M says that the darkening happens over a period of 6-18 mponths, if it happens, and I would probably need to be on the drops for 3 months maximum, so I'd likely avoid that.
If you live in the Boston area and need a fabulous eye doctor, ask me and I will point you in the right direction. She might be a glaucoma specialist -- but I think basically she's who you want to go to if you have enough going on with your eyes that you need someone fabulous.
My oncologist has been really helpful about this too. Last Thursday, when I was still trying to make a backup eye plan, she said that if I needed to go to Boston for surgery in my left eye I could take a week off before starting taxol to do it. Turns out it's not necessary, but I really appreciated her offering the suggestion -- and the fact that she understands that I am probably capable of creating an eye pressure spike just by worrying about not having a good plan.... not to mention her observation that now is a fine time for surgery since my white blood count is through the roof at the moment. (I had a shot of neulasta 2.5 weeks ago to boost it. It kind of overcompensates.) She also said she is planning to try giving me half the amount of decadron that she usually gives people before taxol. I hope it works!
Thursday, July 10, 2008
support group
I went to my first support group meeting last night. I heard about it while having chemo last time -- the woman next to me whipped the curtain between us back and started chatting and told me I should come to their support group meeting. It's for young women -- under 40, but they are apparently flexible about that. (I am the oldest, but the next oldest is 42.) They are flexible about the type of cancer too -- one of the most interesting women there had colon cancer, though most are breast cancer survivors.
They got me rallied up about the eye-steroid thing again. Now I am going to see if I can get my ophthalmologist to put in a bid to get some anecortave acetate approved for me for "compassionate use." Or something. I saw my oncologist today and she said she is already planning to cut the decadron dose in half for me (10 mg before each weekly dose of taxol rather than 20.) I hope it works because apparently the allergic reaction can be deadly. They will watch me, though, she says. (Maybe I will see if I can get the eye doctor at Georgetown to let me come in for eye pressure checks weekly, though I don't generally see her.)
Taxol is apparently the big gun of breast cancer treatment, so not to be messed with. One woman in the support group said that her tumor shrank from 11 cm to 4.5, mostly (or all) on taxol. She started out with a tumor that almost took over her entire breast and managed to have a lumpectomy!!!
I will never have the guts to do that I don't think, even if my tumor shrinks down to nothing..... but I still want it to!!!
I also started lifting weights, on Tuesday. Really light baby weights. I've never done weights, though I've thought about starting for years, for prevention of osteoporosis. Well NOW I'm on chemo, which causes osteoporosis, so I figured it's time! I went to Joan's house and did her routine with her, but with all way lighter weights. It probably took only a half hour.) I plan to repeat it at home, with Matthew's 5 lb weights....... if I stop being sore after Tuesday before I forget what we did!!
They got me rallied up about the eye-steroid thing again. Now I am going to see if I can get my ophthalmologist to put in a bid to get some anecortave acetate approved for me for "compassionate use." Or something. I saw my oncologist today and she said she is already planning to cut the decadron dose in half for me (10 mg before each weekly dose of taxol rather than 20.) I hope it works because apparently the allergic reaction can be deadly. They will watch me, though, she says. (Maybe I will see if I can get the eye doctor at Georgetown to let me come in for eye pressure checks weekly, though I don't generally see her.)
Taxol is apparently the big gun of breast cancer treatment, so not to be messed with. One woman in the support group said that her tumor shrank from 11 cm to 4.5, mostly (or all) on taxol. She started out with a tumor that almost took over her entire breast and managed to have a lumpectomy!!!
I will never have the guts to do that I don't think, even if my tumor shrinks down to nothing..... but I still want it to!!!
I also started lifting weights, on Tuesday. Really light baby weights. I've never done weights, though I've thought about starting for years, for prevention of osteoporosis. Well NOW I'm on chemo, which causes osteoporosis, so I figured it's time! I went to Joan's house and did her routine with her, but with all way lighter weights. It probably took only a half hour.) I plan to repeat it at home, with Matthew's 5 lb weights....... if I stop being sore after Tuesday before I forget what we did!!
Tuesday, July 1, 2008
gross water -- and no travelling
I finished adriamycin & cytoxan last thursday, and not a moment too soon..... on the 2nd to last treatment I was sucking on ice (during the adriamycin push) and it was yucchy. I get almost nauseous just thinking about it. It's been hard to drink water, eat popsicles, or swim, because of the gross taste of the water. (I swam today anyway. No problem with the energy but it sure tasted gross, and it's hard to keep water out of your mouth entirely when you're IN it for almost an hour!) No other taste issues, but water is a biggie! At my last chemo my friend Joan put the rest of my ice, which had melted, into her water, and said she didn't like it either. She knew I had a big problem with it, but I had thought it was the chemo-taste thing I'd been warned about. Well I mean it was -- because I am not picky about food and tastes like this usually. (Usually all my food issues are about body reactions, but I like how it tastes.) However, I was surprised to hear that it bothered her too.
Ugh. I need to write about something else now.
I start taxol in 2 weeks. That will be every week for 12. I am hearing such mixed reviews about it!!! My oncologist says there is really no nausea with taxol. Now why do I think that means she will not give me the anti nausea stuff and then it will be worse..... My nausea has been really not too bad, but it's been "really not too bad" for 5 days every 3 weeks. I keep feeling like I should start getting over it sooner, but that's not how it works! (it's the opposite -- the effect is cumulative -- but I'm impatient.)
I am feeling a bit sad that I won't be able to travel this summer. I feel well enough and I miss all the people I usually see in the summer!!! I could have traveled now, or earlier, in one of these 3 week gaps as long as my white count is up..... happened twice, when my white count got low enough that I needed neulasta shots and then it went way up. (Okay, that has only happened once so far -- the 2nd time is in the making, I'm assuming -- I had the shot on Friday.) However, my mom is here, and it's been really nice visiting with her - I can't remember the last time we had such a long nice relaxed visit. And how many more times will we be able to do this again? (it's not actually my mortality I'm thinking about here..... I found out early on in my treatment that a number of my friends have lost their mothers -- and these friends are not older than me!)
Anyway summer is really just starting and in a minute (that's a 2.5 week minute) I'm really not going to have gaps in treatment that are long enough to travel until October -- by which time my kids will be back in school and not have more than 2 or occasionally 3 days off. Then in December I will be having daily radiation....... Oh well, hopefully I will continue to feel well enough to enjoy biking and swimming (despite the taste) and my time with the people who have been able to come visit!
Walking is out today, though, despite the beautiful weather. Pinky is sick. I took my dog for a 4 mile walk yesterday and kept walking despite the fact that it started raining 10 mins into the walk. I figured it was w
arm out, and if I could do it with a low white count she'd be fine. Well she's not fine....... She wouldn't walk with Alan this morning, and this afternoon when I took her out she turned around after we got around the corner. I took her to the vet...... I know she looked fine to those who had never met her, but the calm well behaved dog I saw at the vet was not my dog. (Maybe in 10 years when she's old she will behave like that.) Sure enough she had a temp of 104°. He gave her fluids and doggy advil and doggy antibiotics that no one could get her to take but me. (She bared her teeth to the vet technician who tried. I guess an unknown person could have been giving her poison....) I just pried her mouth open and popped it in, and she swallowed it. (I tried the moldy cheese trick first -- when she's well she likes moldy cheese....) Alan blames himself for her illness because the day before yesterday he gave her a hose bath outside. (It was really hot.) I brought a bucket of warm water, and they dried her well -- but she came inside where we had the AC on after that. It was set at 78°, but maybe we should have kept her outside longer.
See now that's sick. People sometimes refer to me as sick, but I don't feel sick. I don't look sick. (I look bald, but I don't look sick......) When I do feel sick it's in reaction to a medication. I feel hot sometimes....... probably hot flashes (a few years early but who's counting?) I prefer to think I have an invader. Nice healthy body with a foreign invader. Probably my body noticed the newcomer and moved over to give it a seat..... I'm trying to give it the message, we're moving over the George Bush way of treating newcomers.... get RID of them! (much more appropriate for cancer than immigrants, don't you think?)
Ugh. I need to write about something else now.
I start taxol in 2 weeks. That will be every week for 12. I am hearing such mixed reviews about it!!! My oncologist says there is really no nausea with taxol. Now why do I think that means she will not give me the anti nausea stuff and then it will be worse..... My nausea has been really not too bad, but it's been "really not too bad" for 5 days every 3 weeks. I keep feeling like I should start getting over it sooner, but that's not how it works! (it's the opposite -- the effect is cumulative -- but I'm impatient.)
I am feeling a bit sad that I won't be able to travel this summer. I feel well enough and I miss all the people I usually see in the summer!!! I could have traveled now, or earlier, in one of these 3 week gaps as long as my white count is up..... happened twice, when my white count got low enough that I needed neulasta shots and then it went way up. (Okay, that has only happened once so far -- the 2nd time is in the making, I'm assuming -- I had the shot on Friday.) However, my mom is here, and it's been really nice visiting with her - I can't remember the last time we had such a long nice relaxed visit. And how many more times will we be able to do this again? (it's not actually my mortality I'm thinking about here..... I found out early on in my treatment that a number of my friends have lost their mothers -- and these friends are not older than me!)
Anyway summer is really just starting and in a minute (that's a 2.5 week minute) I'm really not going to have gaps in treatment that are long enough to travel until October -- by which time my kids will be back in school and not have more than 2 or occasionally 3 days off. Then in December I will be having daily radiation....... Oh well, hopefully I will continue to feel well enough to enjoy biking and swimming (despite the taste) and my time with the people who have been able to come visit!
Walking is out today, though, despite the beautiful weather. Pinky is sick. I took my dog for a 4 mile walk yesterday and kept walking despite the fact that it started raining 10 mins into the walk. I figured it was w
arm out, and if I could do it with a low white count she'd be fine. Well she's not fine....... She wouldn't walk with Alan this morning, and this afternoon when I took her out she turned around after we got around the corner. I took her to the vet...... I know she looked fine to those who had never met her, but the calm well behaved dog I saw at the vet was not my dog. (Maybe in 10 years when she's old she will behave like that.) Sure enough she had a temp of 104°. He gave her fluids and doggy advil and doggy antibiotics that no one could get her to take but me. (She bared her teeth to the vet technician who tried. I guess an unknown person could have been giving her poison....) I just pried her mouth open and popped it in, and she swallowed it. (I tried the moldy cheese trick first -- when she's well she likes moldy cheese....) Alan blames himself for her illness because the day before yesterday he gave her a hose bath outside. (It was really hot.) I brought a bucket of warm water, and they dried her well -- but she came inside where we had the AC on after that. It was set at 78°, but maybe we should have kept her outside longer.See now that's sick. People sometimes refer to me as sick, but I don't feel sick. I don't look sick. (I look bald, but I don't look sick......) When I do feel sick it's in reaction to a medication. I feel hot sometimes....... probably hot flashes (a few years early but who's counting?) I prefer to think I have an invader. Nice healthy body with a foreign invader. Probably my body noticed the newcomer and moved over to give it a seat..... I'm trying to give it the message, we're moving over the George Bush way of treating newcomers.... get RID of them! (much more appropriate for cancer than immigrants, don't you think?)
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?
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?
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