At the end of yesterday’s post, I wrote:
“I know one thing: I can’t feel this badly and function well in San Diego, walking miles at a time, researching the latest anti-myeloma therapies for my new book, and writing for both this site and the IMF.
So, I’m going to cut-back on my meds a bit, recording how I feel and which med seems to cause which side-effect.”
Here is my plan. One advantage to taking dexamethasone (dex) orally is you have some control over when and how often you take it.
Dex (trade name Decadron) is normally infused along with Velcade. Standard dose at this point is 40 mg per week.
But with more and more patients receiving Velcade sub-q, it doesn’t make any sense to start an IV for the dex only. So oral dex is prescribed, just like for someone taking Revlimid orally.
Anyway, my understanding is it doesn’t make any difference when you take your 10, 4mg little green pills during the week. Most take all 10 at once. Big rush! Then often big crash. I have been taking 5 pills once right before I go to bed on the day I get my Velcade, then 5 more a few days later.
I take them right before I go to bed. This helps me sleep–at least for the first night. At least for me, there is a delayed reaction, and the dex doesn’t seem to kick-in soon enough to ruin that night’s sleep.
So my plan for this week is to hedge my bets. I took 5 4mg pills last evening (Sunday). I won’t take any more until I return home from San Diego next Tuesday night.
Wednesday I will get a sub-q Velcade injection.
I will also move-up my Revlimid “rest week” by a few days, taking my last dose for this cycle Thursday instead of Sunday. By carefully monitoring how I feel and when, I’m hoping to isolate which drug is causing which side-effect, with the added benefit that I should be feeling close to normal in time for the long flight out and Friday’s important IMF Satellite Symposium.
The results of my informal, non-scientific study should help Dr. Alsina, Dr. Malhotra and I plan which drugs to use–and at what dose–once I start maintenance therapy in a few months.
I will let you know what my common sense research project reveals next week.
My second “experiment” involves supplements. Danny Parker, supplement and complimentary medicine enthusiast and weekly guest columnist, has volunteered to use me as a “Guinea pig” during the upcoming months and years.
He is sending me a carefully selected and calibrated supplement care package, designed to help enhance my anti-myeloma therapy.
The timing couldn’t be better. Although I have started using curcumin, I am going to delay starting any other new supplement until after my next M-protein test results.
If my guess is correct, my current RVD treatment regimen should continue to push my M-spike number back, hopefully down to zero.
At that point, it will be interesting to see if my new supplement regimen will help delay the myeloma’s return. Of course, we will never know for sure. There is no way to compare my progress with and without supplements. But there is enough scientific evidence supporting the use of some of these compounds to make it worth a try, right?
But enough about me! Time to focus on ASH. My flight leaves at noon on Friday. I had better rest up.
Feel good and keep smiling! Pat