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.
Saturday, June 7, 2008
Friday, June 6, 2008
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!
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!
Sunday, June 1, 2008
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!
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!
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