It’s been six months since a warm, swollen right calf sent me to the emergency room at midnight. Ultrasound showed I had a blog clot in my right leg and an asymptomatic one above the knee in my left. Everyone said it was a good thing I sought care because the complication of a pulmonary embolism – when the clot moves “north,” is a really bad – even fatal – event. The whole experience of having a clot and then being hospitalized for a day and a half was surreal for me. Later, I found out it wasn’t just that I was getting older – 61 – but also that I was a cancer survivor that put me at higher risk. Later still, I had a genetic test that showed I had a gene that set me up for DVTs, or deep vein thrombosis, as these clots are called in medical jargon.
As regular readers may recall, a clinical trial coordinator came by as I was about to leave the hospital and approached me about joining a trial for an investigation medicine to lower my risk for future DVT’s. Having benefited from a leukemia phase II trial and having preached enrollment in trials for years I knew I better sign up and not be a hypocrite.
Soon I found myself taking two green pills a day – Coumadin, the old blood thinning standby, and two yellow pills, the experimental Edoxoban. Actually that’s not quite right. Either the green pills or the yellow pills might have been no medicine at all, a placebo. Neither I nor my healthcare team knew which medicine I was on, the old or the new.
Dutifully I have taken my pills every day but one, when I got confused on an overnight flight to Europe. I have had no new DVT’s. What I did have after that flight was “post thrombotic syndrome” where my ankles were really red and swollen for a few days. Compression socks, a lot of water, and walking around seemed to prevent that on the long flights home.
Just today I “graduated” from the clinical trial – or at least taking daily medicine. My doctors feel the risks and cost of medicine for life are not worth it UNLESS I have another DVT. Of course, I am a little skittish about that. No, I don’t want to take unneeded medicine. But I also don’t want to risk one of those pulmonary embolisms. I guess we all face health risks as we grow older. So we just do our best and try not to worry about what could happen but probably won’t.
I’ll be followed for another year by the trial team. They took four tubes of blood today on my “graduation” day. I am happy to help, although I battled snow and ice (uncommon in Seattle) to get to them today. The goal, of course, is to win approval for a safe and effective medicine that is much less tricky to use than Coumadin, which has risks of its own. I hope my participation has helped.
I continue to be a believer in participation in clinical trials. That’s how we patients help advance potentially better medicines for all of us. My participation was no big deal and just maybe it was the yellow pills, the new drug, that were the active ones for me and I was getting “tomorrow’s medicine today.” So I would urge anyone to consider participating in a trial. You’ll get monitored closely and feel like you are doing good to help yourself and others.
For more on DVTs, listen to the Patient Power program: