My chemo side effects have been getting worse after each round of treatment so my doctors at NIH and here agreed a few days of oral steroids were warranted and should help. All throughout this course of treatment I have been getting two IV steroids on the day of my treatments (dexamethasone and solumedrol). For for the last couple of rounds I also been back on my old friend, oral dexamethasone, which has been in the news given a certain President who has covid-19.
The first time I took dex post-treatment it kept the side effects from getting worse. While this is not a resounding endorsement it was an improvement. This last time around it definitely helped mute the side effects the first couple of days but when I got to Thursday and started my taper off the steroids and by the evening I was beet red and looked, and felt, like I was having a bad allergic reaction. I was a bit freaked out until I realized I'd starting tapering and it was the chemo side effects popping out on a delay. These delayed side effects continued through the weekend and included surprises like laying down last Sunday at 1 for a headache planning to rest for 30 minutes, only to wake up at 5:30 pm and realize I had slept the day away (and barely was able to wake up until 9pm).
Facts about dexamethasone...
- It was first approved for use in 1961. It has been around for a long time so it is well known to doctors and the side effects are well documented.
- It is a potent, long acting steroid. It is about 6 times stronger than predisone that is what doctors usually prescribe for poison ivy, bronchitis, etc. and dex stays in your system longer.
- It is an anti-inflammatory drug. One of the reasons it is given with cancer is to suppress your immune system response (in my case to chemo drugs) and this includes suppression of fevers. So if your temp is normal and you are taking a steroid that is the expected response and the steroid may be masking a fever from an underlying infection or illness.
- You need to taper off of dexamethasone. If you stop abruptly it can be very dangerous if your adrenal glands do not "kick in" immediately because they stop producing cortisol when you are on the medication.
- Irritability is a common, documented side effect of dexamethasone.
Having had a lot of personal experience with dex it makes you feel much better than you would otherwise when you are on it. You have a rush and feel like you can do a lot more than your body would feel like otherwise. When you come off of it, you feel it, and you can have lingering side effects.
I have never been on steroids without being irritable (ask my family) and erratic. I am barely trusted to make sure I turn off the stove and oven, much less lead a country. Understanding how much of this medication someone has received and when they will be off of it are important pieces of medical information.
This brings me to the upcoming election. I firmly believe American needs a President who unites us versus divides us. We all want the best for our families. I also believe that diversity of thoughts and opinions is helpful but spreading lies and misinformation is not. We have gotten to the point there is not alignment to facts and data which I really struggle to understand. I am tired of a President who constantly lies, bullies and is a general horrible role model, much less a horrible leader.
Chad and I were going to vote by mail but we decide to go in and early vote. We had to surrender our mail in ballots and we were really impressed with the social distancing and infection control precautions in place at our local Board of Elections. I feel strongly this is the most important election of my lifetime. I have written postcards to turn out the vote, made calls, given money and voted. Please think deeply about your choices and who is best for leading our country in this unprecedented time.
I think the question Susan Page posed to Vice President Pence this week (that he did not answer because there is no defensible answer) is an important one, which was something to the effect of "how do you explain the fact that the US has over 210+k deaths from covid-19 which is ~22% of the world's fatalities and we represent only ~4% of the world's population." Please make a plan to vote and consider this fact when you make your decision.
Tomorrow is my last day of chemo. I am going to ask about slowing the dex taper and I am so excited to feel better for more than a few days I can't explain my excitement!