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!!
Thursday, July 10, 2008
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?
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…
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…
Saturday, June 21, 2008
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.
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.
Friday, June 13, 2008
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!
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!
Saturday, June 7, 2008
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.
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.
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