Notes From the Infusion Chair -- November 7, 2019 [may be TMI; read at your own risk]
8:45am -- I'm not actually in the infusion chair yet. Before I get there, I have an appointment for an echocardiogram, which is a routine every-three-month thing for me. After the echo, I'll head downstairs for an appointment with my oncologist. I see her every six weeks.
I left the house with time to spare this morning, and I'm so glad I did. It was a bad traffic day -- the Freeway was backed up all the way down 295 and halfway down 210. It wasn't stressful, though, because I knew I'd get there at least on time if not early like I'd hoped. The ride was very tiring, though. I worry about that. I tire so easily, which makes a two hour drive a little dicey.
11:20am -- I've had my echo, then my appointment my oncologist. By the time I left my oncologist's office, the echo results still hadn't come through. She okayed treatment today and will keep an eye out for the results. So now I sit in the infusion center waiting room waiting to be called back for treatment.
At today's appointment, I spoke with my oncologist about discontinuing Perjeta again. I know the risk, and I weigh the risk with my reasons for wanting to discontinue it. I know some of you will think this TMI, but I promised honesty and transparency; my goal here is to educate about cancer, it's side effects, and how we deal with it. So, here it is: this past April, we made the decision to take a break from Perjeta due to painful neuropathy. After four months, the neuropathy improved. So, Perjeta was added back in. Since I had taken a break from it, this first (in awhile) dose was the loading dose -- a bigger dose over a longer period of time. Nausea hit hard after this one, but I knew it would be easier with subsequent doses.
After the second dose three weeks later, the nausea was better, but not by much. The other side effects were reminding me of their existence also. Here's the TMI part. If you don't want to read about the nasty side effects, stop reading here and skip down to the paragraph next to the photo.
Neuropathy was getting worse. Tingling on the bottoms of my feet and the palms of my hands. As time goes on, the tingling gets stronger until eventually it becomes painful. There are also muscle cramps in my legs, feet, and toes. These muscle cramps can't be soothed with massages; that actually makes it worse. Only walking around and/or stretching the muscles helps. This makes for very interesting middle-of-the-night bathroom time. 🤣 I'm told that what I describe is actually not a muscle cramp, but a Charley Horse. Whatever it is, it's painful.
Next on the list is diarrhea. It used to happen three days after treatment, about thirty minutes after a meal. I could plan for this, take a pre-emptive dose of Immodium. Lately, though, it's been random. And, although it's not always diarrhea, it is always urgent. This is now affecting my job. One day just this week I had to leave my classroom abruptly three times, two of those times within the same hour. On another occasion, I had to leave work because I didn't quite make it. It's awfully embarrassing. Why don't I just take Immodium on the regular, you ask? Well, I asked my oncologist. She said that taking Immodium regularly would just cause constipation. Trading one problem for another.
Those are the two major side effects, and the ones that prompted me to speak with my oncologist about discontinuing the medication. The rest of these side effects I'll tell you about did not play any role in my decision. I just want to put them all out there; full disclosure.
Another major side effect is loss of balance. I'm finding myself stumbling every once in awhile. It's concerning to me. I've been able to get rid of the walker, and I really don't want to have to go back to it. I'm hoping that continuing to exercise will help with this one.
A more minor side effect is tiredness. Perjeta is not the only one of my meds that causes tiredness, so I get a double dose of it. This is probably why I didn't do so well at yoga last night, but that's another story.
I also have thin skin. It doesn't take much to draw blood when I scratch an itch these days, and my skin is quite itchy. My shins have quite a few scratches all the time. At treatment, I need to remember to ask for the pink dressing, which is for sensitive skin, and paper tape over the gauze instead of a band-aid. This did not used to be the case.
Sores inside my nose. Sounds weird, doesn't it? When I mentioned it to my oncologist, she nodded knowingly. It's not unusual.
End of TMI section!
12:30pm -- I'm in the infusion chair, and Zofran is going in. Although nausea is associated more with Perjeta than Herceptin, I didn't want to take any chances, especially since I have to drive home. Zofran runs over ten minutes, they wait twenty minutes for it to take effect, then start Herceptin. Then I'll stop at the coffee shop for a little caffeine to get me through the afternoon traffic.
So there you have it. A decision to discontinue a medicine is not one to be taken lightly. I have thought about it long and hard. I talked it over with my husband and my oncologist. I am not saying I'm discontinuing it forever; I may add it back in when school lets out for the summer. I can manage the nasty side effects a little better when I'm at home. ...and it goes without saying that if there is progression while I'm not taking it, it will be added back in.
It's now 1:16pm, and we're still waiting for Herceptin to come up from the pharmacy. The light is off in my little cubicle here, I have a nice warm blanket on, and the relaxing music station is on the television. It's time for a little nap....
I left the house with time to spare this morning, and I'm so glad I did. It was a bad traffic day -- the Freeway was backed up all the way down 295 and halfway down 210. It wasn't stressful, though, because I knew I'd get there at least on time if not early like I'd hoped. The ride was very tiring, though. I worry about that. I tire so easily, which makes a two hour drive a little dicey.
11:20am -- I've had my echo, then my appointment my oncologist. By the time I left my oncologist's office, the echo results still hadn't come through. She okayed treatment today and will keep an eye out for the results. So now I sit in the infusion center waiting room waiting to be called back for treatment.
At today's appointment, I spoke with my oncologist about discontinuing Perjeta again. I know the risk, and I weigh the risk with my reasons for wanting to discontinue it. I know some of you will think this TMI, but I promised honesty and transparency; my goal here is to educate about cancer, it's side effects, and how we deal with it. So, here it is: this past April, we made the decision to take a break from Perjeta due to painful neuropathy. After four months, the neuropathy improved. So, Perjeta was added back in. Since I had taken a break from it, this first (in awhile) dose was the loading dose -- a bigger dose over a longer period of time. Nausea hit hard after this one, but I knew it would be easier with subsequent doses.
After the second dose three weeks later, the nausea was better, but not by much. The other side effects were reminding me of their existence also. Here's the TMI part. If you don't want to read about the nasty side effects, stop reading here and skip down to the paragraph next to the photo.
Neuropathy was getting worse. Tingling on the bottoms of my feet and the palms of my hands. As time goes on, the tingling gets stronger until eventually it becomes painful. There are also muscle cramps in my legs, feet, and toes. These muscle cramps can't be soothed with massages; that actually makes it worse. Only walking around and/or stretching the muscles helps. This makes for very interesting middle-of-the-night bathroom time. 🤣 I'm told that what I describe is actually not a muscle cramp, but a Charley Horse. Whatever it is, it's painful.
Next on the list is diarrhea. It used to happen three days after treatment, about thirty minutes after a meal. I could plan for this, take a pre-emptive dose of Immodium. Lately, though, it's been random. And, although it's not always diarrhea, it is always urgent. This is now affecting my job. One day just this week I had to leave my classroom abruptly three times, two of those times within the same hour. On another occasion, I had to leave work because I didn't quite make it. It's awfully embarrassing. Why don't I just take Immodium on the regular, you ask? Well, I asked my oncologist. She said that taking Immodium regularly would just cause constipation. Trading one problem for another.
Those are the two major side effects, and the ones that prompted me to speak with my oncologist about discontinuing the medication. The rest of these side effects I'll tell you about did not play any role in my decision. I just want to put them all out there; full disclosure.
Another major side effect is loss of balance. I'm finding myself stumbling every once in awhile. It's concerning to me. I've been able to get rid of the walker, and I really don't want to have to go back to it. I'm hoping that continuing to exercise will help with this one.
A more minor side effect is tiredness. Perjeta is not the only one of my meds that causes tiredness, so I get a double dose of it. This is probably why I didn't do so well at yoga last night, but that's another story.
I also have thin skin. It doesn't take much to draw blood when I scratch an itch these days, and my skin is quite itchy. My shins have quite a few scratches all the time. At treatment, I need to remember to ask for the pink dressing, which is for sensitive skin, and paper tape over the gauze instead of a band-aid. This did not used to be the case.
Sores inside my nose. Sounds weird, doesn't it? When I mentioned it to my oncologist, she nodded knowingly. It's not unusual.
End of TMI section!
So there you have it. A decision to discontinue a medicine is not one to be taken lightly. I have thought about it long and hard. I talked it over with my husband and my oncologist. I am not saying I'm discontinuing it forever; I may add it back in when school lets out for the summer. I can manage the nasty side effects a little better when I'm at home. ...and it goes without saying that if there is progression while I'm not taking it, it will be added back in.
It's now 1:16pm, and we're still waiting for Herceptin to come up from the pharmacy. The light is off in my little cubicle here, I have a nice warm blanket on, and the relaxing music station is on the television. It's time for a little nap....
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