I am enjoying being back home and am still figuring out how to best live with my new chemo meds. Last week was a full week with ups and downs.
The first few days of last week were back to back, packed testing to establish baselines across literally everything you can think of. The good news is that I know definitely there is nothing else wrong with me besides having leukemia! There were no surprises in the testing. The results were taking longer for them to get back than they thought so I had to stay an extra night. In the end, the results came back and they got the drug companies approval on Thursday but I ended up staying two extra nights.
I started one of the two oral chemo drugs I'll be taking Thursday night. I asked a lot of questions over the course of last week about side effects, what were the most common and when they appear. In general, most of the side effects do not emerge until 3-6 months but they were clear they had seen huge variability in the timing of people seeing side effects and which ones they had with no patterns.
I took my first does Thursday night, went to sleep and woke up looking like (and feeling like) I had a bad sunburn on my face, and my fingers and hands were very swollen. I sent my medical team an email with the side effects asking if I should come by before my flight. The published side effects of both drugs are worse when taken separately versus together so I assumed it was no big deal, just needed to start on the other chemo drug.
I was not anxious until the nurse practitioner called and told me this was the first time they had seen someone react to the first dose. My doctor saw me immediately once I arrived and thought I needed to start on steroids. They got me in to dermatology who I had seen earlier in the week. I had some professional medical photos of my hands and face taken for their research, started the steroids then both chemo drugs later. I was suppose to be on my flight home when I was taking my meds which freaked me out in case I had other reactions so we pushed my return flight back a day and I got some extra time with my sister and her family Friday night, and good friends on Saturday morning.
The side effects have been mild (chills, headache, nausea) so far and feel like I am learning the tricks of how to manage them. I have this feeling it is going to be like having your first baby - as soon as you figure out a routine things will change. We'll see. My family makes me feel healthy and like my normal self. It is good to be home with them.
I'm home this week and then I head back to NIH next week for more testing and refills on my meds. They said they usually see a 50% decrease in the cancer after the first two weeks. Excited to see how next week goes!
The first few days of last week were back to back, packed testing to establish baselines across literally everything you can think of. The good news is that I know definitely there is nothing else wrong with me besides having leukemia! There were no surprises in the testing. The results were taking longer for them to get back than they thought so I had to stay an extra night. In the end, the results came back and they got the drug companies approval on Thursday but I ended up staying two extra nights.
I started one of the two oral chemo drugs I'll be taking Thursday night. I asked a lot of questions over the course of last week about side effects, what were the most common and when they appear. In general, most of the side effects do not emerge until 3-6 months but they were clear they had seen huge variability in the timing of people seeing side effects and which ones they had with no patterns.
I took my first does Thursday night, went to sleep and woke up looking like (and feeling like) I had a bad sunburn on my face, and my fingers and hands were very swollen. I sent my medical team an email with the side effects asking if I should come by before my flight. The published side effects of both drugs are worse when taken separately versus together so I assumed it was no big deal, just needed to start on the other chemo drug.
I was not anxious until the nurse practitioner called and told me this was the first time they had seen someone react to the first dose. My doctor saw me immediately once I arrived and thought I needed to start on steroids. They got me in to dermatology who I had seen earlier in the week. I had some professional medical photos of my hands and face taken for their research, started the steroids then both chemo drugs later. I was suppose to be on my flight home when I was taking my meds which freaked me out in case I had other reactions so we pushed my return flight back a day and I got some extra time with my sister and her family Friday night, and good friends on Saturday morning.
The side effects have been mild (chills, headache, nausea) so far and feel like I am learning the tricks of how to manage them. I have this feeling it is going to be like having your first baby - as soon as you figure out a routine things will change. We'll see. My family makes me feel healthy and like my normal self. It is good to be home with them.
I'm home this week and then I head back to NIH next week for more testing and refills on my meds. They said they usually see a 50% decrease in the cancer after the first two weeks. Excited to see how next week goes!
