Monday, June 28, 2010

A crazy few days last week - concerns over bleomycin pulmonary toxicity

We had a few crazy days last week which I wanted to share. Last Monday started off fairly innocuously. I came in on an off week to get my blood work done to check my WBCs. Those all looked good. But, I had a couple of symptoms over the weekend I also wanted to investigate. Both Friday and Sunday nights my upper air way felt a bit constricted and I wanted to chat with the PA about that (my oncologist has been on a month long sabbatical so I've been seeing a  PA). She puts on a heart-rate/O2 monitor on my finger to see how things are going and it shows that my O2 saturation has dropped from 98->86% (most people in Colorado would typically run around 94-98%) and my heart rate has jumped to 157. Whoa. They then put me on a blood pressure cuff that also measures heart rate and  my heart rate is 135 sitting. Double whoa. I sit there and  hydrate for a bit and my heart rate goes down to about 85. But at this point, the shit has hit the fan. They're worried that I may have some pulmonary/cardiac misbehavior going on and don't want me to pull a Jim Fixx. Look really healthy and then drop dead of a heart attack. So the medical system kicks into hire gear with me at the center of it. So the next 48 hours look like this:

  • Call Susan and give her the heads-up that the world has turned "interesting". Kind of like the calls after you crash on your mountain bike. "Hi. I'm ok. But. I may be headed toward some major cardiac event. And how was your morning?" Honestly, I can't image what it must be like to be married to me and get these phone calls. I'm really thankful she still answers the phone but it must be getting a little old! So now she's completely weird-ed out - should she come over to the hospital, is it all a false alarm, what? So she tries to work for a bit, realizes she's completely useless and heads over to do the wing-woman thing in person. Meanwhile....
  • Across the street for a 12 lead EKG. The machine says that my heart rate looks normal. So far, so good.
  • Then down the hall way to get a CT chest scan with contrast. The contrast is an injection you get that makes the CT scan more readable. It uses iodine which is the chemical that people tend to be allergic to when they have a shell fish allergy. Which I do have, so I tell them. But I had a CT scan with contrast in March and it was fine, so I'm not worried. I get into the CT scanner, they inject the die, and I almost immediately start thinking - "I am going to puke all over this machine." To think that I've been through 7 doses of ABVD without ever getting anywhere close to yakking and now I'm going to lose it over this diagnostic dose of contrast." Luckily, I get through it without giving the friendly technicians a view of what I had for breakfast. Back over to the chemo center to wait for results. If things look bad, I will get checked into the hospital. And for sure I can't ride my bike home until we figure out what's going on. I go into the bathroom and notice that I've now get two big welts on my face. Allergic reaction to the contrast. Great...
  • An anxious 1/2 or so waiting for results. Susan shows up and we do the hand wringing thing for a bit.
  • Results are back - someone has interpreted the EKG and suggests that I have an abnormal heart function - a partial left bundle branch block.
  • The PA is now concerned that the LBBB, combined with the episodic tachycardia and breathing symptoms I had might be an early sign I'm getting some bleomycin induced pumonary toxicity. This is Bad Stuff - once the bleo damages your lungs there is no way to fix it.
  • So, to get on top of this we decide to start me on a pretty high rate of a gluco-corticoid - Prednisone. This is a pretty powerful steroid that is widely used in chemo, RA and immune-system disorder diseases. Short term it's wonderful stuff. Long term it is more Scary Shit. Obesity, changes in behavior (think roid rage), body shape changes (buffalo hump back), increased risk of infection, increased hypertension and the risk goes on. Sigh.
  • Because of the concern of bleo toxity, we decide to do another pulmonary function test to characterize my lung function. Get the test scheduled at 3:10 and at 3:20 I'm in the door at the cardiac/pulmonary office at BCH. Talk about a killer health care system! 
  • The guy that does my PFT is just back from Ride the Rockies and has done the Copper Triangle. So we have fun chatting about biking while running the tests. My pulmonary function still looks really strong - I'm at about 130% of lung volume function for a guy my height, weight and age. We then run another test that looks at gas diffusion rate. That number is decreased, down from %150 of normal to 125%. So I'm still high normal but no longer a super man with my current lung function...
  • Good news is that the CT chest scan looks good. So I don't have any visible evidence of lung or heart damage. And the CT scan shows that my lymph nodes continue to shrink.
  • Tuesday mid day - get the news that they want to get an echo-cardiogram to further evaluate cardiac function. So back to the cardiac/pulmonary testing center for another test. 
  • This test also looks normal. Lots of details on cardiac function I don't completely understand but the bottom line is, no major obvious issues. Which is obviously Good News.
  • Tuesday afternoon, we get a consult setup with a pulmonologist. The chemo guys admit they don't know quite what's going on so they want a specialist consult. So we get that scheduled for Wed morning.
  • Wed morning and the appt is right when the US is playing Algeria in soccer in the World Cup! I know my priorities are screwed up but I REALLY want to go over and hang with my peeps and watch the game. But of course I have to be all adult and go to the doctor's appt. The US gets the game winner in the 92nd minute while I'm in the waiting room so I can at least relax about that.
  • Get into see the pulmonologist and he's really great. Turns out that I don't have an LBBB, I have a partial right bundle branch block. And, I had it on the EKG in March as well as last week. And, this is common in athletes as part of their heart over develops to the point where your rhythms can change and makes the EKG look abnormal. He puts on an O2/heart rate monitor and we hike up some stairs in the hospital. My heart rate elevates but it's not crazy and I stay pretty oxygenated. So his bottom line is that I don't have anything obviously wrong with me from a pulmonary perspective:
    • And I can go to Crested Butte (8900 feet, questionable place to hang out if you're worried about your lung function)
    • Yes, I can ride my road bike
    • Yes, I can mountain bike, but listen to your body as there's really no easy mountain bike riding in CB (too true!)
  • While all of this is going on, the PA is on consult with the other oncologists in the practice. The big question is - to bleo or not to bleo? They're pretty convinced that something was going on in my pulmonary function and so again, we're into risk management. We don't want to do anything that reduces my long term survival rate but on the other hand, if you treat someone and end up turning them into an invalid because they can't breathe, that would be A Bad Thing. 
So it's a major decision point. What to do? It's at this point that you realize that there's some art and craft in this as well as science. There is research to support the approach that most of the value from bleo comes in the first few doses. And I'm an early stage 3 guy and if I was stage 2, I would only get 8 dose of bleo anyway. So here's the new treatment plan:

  • No more bleo
  • Six weeks of prednisone, tapering off from 60 mg->0 mg over that period
  • Get an exercise stress test to see if there's any underlying pulmonary/cardiac issue that needs to be addressed.
As of this morning I've been on the Prednisone a week. It's made me a bit hyper but in general I feel OK. It would be nice if removing the bleo from my protocol makes me feel better after treatment.

So it's been a bump in the road and a bit unsettling to think that my core organs may get permanently damaged from this treatment. But being scared gets kind of boring and tedious after a while. It take energy and work to stay scared and there's no payback. So I've been chanting a bit to myself this week. Trust my body, listen to my body, Don't Be A Dumbass physically.

Ok, that's the deep medical dive for the day! Hoping that the prednisone clears up any nascent lung problems the bleo created and I have another 56 boring days of chemo and recovery.


    1. Cool that you get to go off the Bleo! The risk management world is quite a dance between danger and safety, liberal and conservative, science and art, etc. It sounds like you are cancer-treatment-disco-ing with a good medical team though. Here's hoping that you have smooth sailing for the last four treatments! And keep up the Don't Be a Dumbass chant in the you!

    2. You get hyper??? This could never happen! (So glad they are taking such good care of you and that this turned out to be a bump in the road, not something involving guardrails and ditches.)