Hello All,
I've now been inducted into the PE club, with blood clots discovered in lower and upper right lobes via CT scan (part of the battery of screening tests for the Merch anti-PD1 trial). I'm guessing I had them prior to taking a trip to Nashville, so how lucky am I to live to tell the tale? I'm now on Lovenox, waiting to transition to Xarelto, a non-warfarin oral blood thinner. The UCLA oncologist specifically said (via email, since I was already in bed when he called to break the news) Lovenox, Arixtra, Xarelto, or Eliquis. While I vividly recall Joe S./Bobbye's DVT experience and Dr. Weiss' post on the subject, I have some concerns as regards how the "sweet spot" is found with the newer drugs. I've also just learned that it takes months for PE's to resolve, so I'm wondering how much of a threat they are even once blood thinners have been started, and if there's anything one can do to boost the safety factor.
So if the standard blood tests used to determine correct dosage for Coumadin and warfarin aren't used for Lovenox and the other drugs, how is correct dosage determined? I understand the recommended dose is based on weight, etc, but is that accurate enough? What's the difference between dosing once/day vs. twice/day?
I'm currently on 60mg Lovenox bid, and will start on Xarelto 15mg daily for a week, then 20 mg daily. The internal med resident couldn't answer my questions, was quite perturbed that I couldn't just go on Coumadin, despite the UCLA onc's orders. (Thank goodness my KP oncologist did the right thing and overrode her.)
The good news is, I'm starting the MK-3475 trial on Tuesday, 12/17. Crossing my fingers as I'm on my own for this first infusion!
Thanks,
Jazz
Reply # - December 14, 2013, 07:08 AM
Reply To: Coal in my stocking, aka blood clots
I'm real glad you're starting the trial next week. Are you traveling all the way to Nashville for treatment? Hopefully you're staying closer to home. I'm happy too that you made the long plane trip without problems. Jeez I can only imagine the scare looking back after finding the clot.
From what Dr. Weiss wrote it looks like dosing lovenox isn't as persnickety as coumadin so I hope you won't have anymore problems with clots. I'll ask him to comment on you post.
I'm so sorry you're having these problems. Better we plan on anti PD-1 working really well.
Janine
Reply # - December 14, 2013, 07:53 AM
Reply To: Coal in my stocking, aka blood clots
With the older drugs, heparin and coumadin, drug levels were frequently off and you had to monitor basic coagulation #s to get them right. With lovenox, drug levels are personalized by weight; then, they are pretty much just right, as long as the kidneys are working well and weight doesn't change a lot; when in doubt, levels can be checked. When you get to the newest class or oral drugs like xarelto, there is a single dose that is right for just about everyone and no testing is necessary to be sure that the level is right. If, for some reason, one really wanted to, you can use the same test as for lovenox (anti-Xa activity, for those who are curious) but it's so rarely necessary or helpful that there aren't even accepted normal values.
Reply # - December 15, 2013, 09:11 PM
Reply To: Coal in my stocking, aka blood clots
Thanks, Janine and Dr. Weiss. I'll be doing the trial at UCLA, thankfully, so just a couple of hours away. I'm in the wash-out period for Tarceva (7 days) and am fairly scared, after all this time without other intervention. I truly can't wait to start treatment, and hope against hope it works.
I'll start Xarelto tomorrow. I hope there aren't side effects. Not sure if Lovenox is the cause of stomach ache, headache, or itchy throat… of if that's from everything else…
Hope everyone's holiday season is merry and bright so far!
Jazz