Monday, February 19, 2018

Recap of Last Week

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!

Monday, February 12, 2018

Back in Bethesda

It is definitely easier starting your second trial at NIH than your first. It is nice knowing what to expect, where to go, what questions to ask, some of the people, etc.

There are always unexpected surprises though. When I got to the lab at 6:30 am this morning the tech doing my labs literally had to go and confirm she could pull them all because of how much blood they wanted at once. From there I went to back to back CT scans, EKG, bone marrow biopsy, and then double MRIs.  My paperwork for a "guest" badge ended up being for a different part of the campus, and I got to do that twice, but am hooked up with the express entry pass to NIH - fun day.

Tomorrow turns to more of the generic base line screening and I get a free trip to the NIH dermatologist, ophthalmologist, and a long visit with the pulmonology team.  I really was not sure why I needed to be here for four days when I booked my ticket but I arrived at NIH at 6:30 this morning and it was about 6:30 pm when I was back at my hotel room for the night. They have filled my days!

The tests today confirmed I am a good candidate for the Dabrafenib and Trametinib trial. I am not officially accepted until all the tests are done and the drug company sponsoring the trial approves me as a participant (which I should have by Thursday). I got a call from the travel group today to book my trip back in two weeks so think my team at NIH thinks this is all going to start.

Assuming everything moves ahead as planned then on Thursday I get two weeks worth of chemo meds. I start on Thursday and take them everyday. It sounds like for most people the side effects hit further down the road and the first few months are generally not too bad.

The most invasive tests were today, so they behind me. I am tired, and sore but otherwise fine and glad to not be in limbo but to have things moving ahead. I'll let you know how the rest of the week goes!