Monday Joe had a scheduled ultrasound for his left leg that had the blood clot (DVT) in May. He was told to use the outpatient services in the building where he has his doctor and weekly blood work done. A clot was seen in his thigh and his doctor’s office was given the information. His doctor was out because he broke his ankle and so the CNP was taking care of things. When Joe first developed the clot in May it was seen by staff and equipment at the Cleveland Clinic. Local doctors never saw it just from reports and from Joe how extensive it was (from the groin to the calf). What was seen on Monday it was not communicated (or believed when communicated) that what was seen was most likely the old clot still there taking some time to dissolve because of the size of it to begin with. Joe was told to report to the ER for IV Heparin then transport to the Cleveland Clinic. He waited until he heard for sure from Laura (the super hero oncology nurse) because he wanted to see what the CC staff thought. He was thinking that even if there was still a clot it may be better than it had been and he had no issues. He had run a 5K 9/10 and has been running with E&J at cross country practice, and up and down the steps at Lucas Oil Stadium at the Browns game Sunday. Laura agreed (maybe not knowing what was seen or that the local doctors did not know the history of the clot). He was told to not stop at home to pack a bag. He did stop to get something to eat and enjoy since he knew it would be a while before having good food again.
So I’m making plans at work to have the kids taken care up and get my self to Cleveland. When I get out of work at 12:30 I run home to pack him a bag and make to St. Luke’s to see him before he leaves. I make it as the transfer ambulance staff wait for me. It was stressed to Joe they could not wait long for me but they were in no hurry evidently because they opted to make Rt 2 all the way. Joe said it took forever as he was checking the map on his phone. Once he did get to CC the staff there said he had been waiting for him and wondered what took so long. He got to his room but he was disappointed in how long it took to get the Heparin restarted.
Not wanting to freak out E&J by having them be picked up by someone else, I picked them up from school, picked up Mark and went home to have something normal while waiting for my Dad to get there after work (Mom was going to relive Dad and stay the night to get the kids to destations Tuesday morning). After dinner a dear friend took me back to St. Luke’s so I could get Joe’s car and drive to Cleveland. With the rain and Joe’s little car (and the news that a long time friend and teacher of Joe’s was killed that morning in a car accident) I used caution and stayed in the right lane. I did not get to the CC until 9:15. Joe said nothing has happened since he got there not even an ultrasound to see for sure. I stayed an hour just missing the first hour of free parking by 4 minutes. I went to stay with Joe’s aunt and uncle who have been so kind in letting me stay over night so many times. I never did get to see them because they were asleep when I got there and had already left early when I left there at 7 to get back to the hospital.
Back to the hospital (and the traffic on I-77 oh what fun). We waited for hospital transport for more than an hour. Joe could have walked himself (3 times for all the time waiting) there no issues but they needed him to be with transport. Their ultrasound showed that there was no longer a clot below his knee. The thigh area was “inconclusive” because the first ultrasound in May did not get a good image of that area because of the swelling in his leg. So not having a good image to look at they were not able to tell if what he had was new or old. I’m no doctor but I’m really frustrated that given how extensive the clot was in May and what it looks like now my guess is it is still just part of the old one. He has been on blood thinners since the clot in May was discovered so the chances of developing something new was slim.
So they stop his Heparin and let it wear off for a few hours before getting him started on shots of Lovenox. It is a blood thinner he has to injected himself with twice a day. In order to get a better handle the interaction of the trail meds and Coumadin they opted to stop the Coumadin (great we just had a prescription refilled) and start with the Lovenox. The blood coagulation rate, INR, was never right where they wanted it because the interaction with the trail med made the Coumadin not as effective. When he was taken off the trial meds (twice now) his INR gets too high and he has a greater chance of bleeding. The trail meds and Lovenox don’t cause problems together but the Lovenox does tax his kidney some. We can never win.
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Well it has taken me almost a week to get this written. The latest is that Joe is just tired from the trial meds. He did coach at the Cross Country meet on Saturday and walk/run the Northwest Ohio Race for the Cure on Sunday. If the children/dog would let him get a good night of sleep then he would not be so tired.
We go back to Cleveland for a regular check up Oct 6.
Monday, September 26, 2011
Wednesday, September 14, 2011
Joe posted on his FB 9/13/11
On one of our first trips to Cleveland Clinic in April, Katie said that she saw our fight against cancer as being something like Whack-a-Mole; we’d probably beat it down every time, but something would crop up in another place.
The past month, we’ve been hammering at the same mole over and over again: Kidney function. When last we updated, I’d seen my creatinine levels climb up to nearly-dangerous levels, at which point they pulled me off the experimental drug, and my kidney function returned to a normal level.
So this morning, I had to get a full panel (whatever the hell that means) done at St. Luke’s. Sure as anything, my creatinine level was high – higher than it’s ever been in this adventure. This afternoon, my trial nurse called to say they’re pulling me off drug for a week.
To say that I have mixed feelings is to undersell the situation. On one hand, I’m grateful that we know how to keep Los Uno Kidney functioning. I’m also grateful that, at least for the next week, my fatigue and memory loss ought to improve. But I’m more than a little frightened to lose that chemo security blankey for a week.
Obviously, this is why they do drug trials – to find out if the cure is worse than the disease. And I’m proud that whatever happens, I’m helping to advance scientific knowledge. But I kind of feel like my body is my crappy old car right now. My Corolla’s engine light has been on for a year or two; it’s the mass air flow sensor. I clean it two times a year, the mechanic says there’s nothing to worry about, but as you drive down the road you can’t help but notice that light, and estimate the repair payments down the road at some ill-defined point in the future.
I keep trying to convince myself that my body is that Corolla – it may rust, the check engine light may be stuck on, the steering wheel might be a little grody, and the upholstery’s seen better days. But under the hood, as long as you keep up with the routine maintenance, it’ll run forever. Please, God, let my body be a Toyota.
On one of our first trips to Cleveland Clinic in April, Katie said that she saw our fight against cancer as being something like Whack-a-Mole; we’d probably beat it down every time, but something would crop up in another place.
The past month, we’ve been hammering at the same mole over and over again: Kidney function. When last we updated, I’d seen my creatinine levels climb up to nearly-dangerous levels, at which point they pulled me off the experimental drug, and my kidney function returned to a normal level.
So this morning, I had to get a full panel (whatever the hell that means) done at St. Luke’s. Sure as anything, my creatinine level was high – higher than it’s ever been in this adventure. This afternoon, my trial nurse called to say they’re pulling me off drug for a week.
To say that I have mixed feelings is to undersell the situation. On one hand, I’m grateful that we know how to keep Los Uno Kidney functioning. I’m also grateful that, at least for the next week, my fatigue and memory loss ought to improve. But I’m more than a little frightened to lose that chemo security blankey for a week.
Obviously, this is why they do drug trials – to find out if the cure is worse than the disease. And I’m proud that whatever happens, I’m helping to advance scientific knowledge. But I kind of feel like my body is my crappy old car right now. My Corolla’s engine light has been on for a year or two; it’s the mass air flow sensor. I clean it two times a year, the mechanic says there’s nothing to worry about, but as you drive down the road you can’t help but notice that light, and estimate the repair payments down the road at some ill-defined point in the future.
I keep trying to convince myself that my body is that Corolla – it may rust, the check engine light may be stuck on, the steering wheel might be a little grody, and the upholstery’s seen better days. But under the hood, as long as you keep up with the routine maintenance, it’ll run forever. Please, God, let my body be a Toyota.
Thursday, September 1, 2011
Good news from Joe's Cleveland Clinic super hero army. His BUN and Creatinine (indications of kidney function) levels are better after being off the medication for 8 days. So it looks like he does have the drug (Pazopanib) (but we can't say for sure of course) and not the placebo but it is also means when he takes it it hurts the kidneys. Just yesterday there was an amendment to the study to start new participants at 600mg instead of 800mg. So with all of those indicators they started him back at 600mg. Local blood work next week to see how it all looks.
Pazopanib is also interacting with Coumadin. His INR (blood clotting factor) results were such that they had to keep increasing his Coumadin over time to the height of 7.5mg. When he went off Pazopanib his INR went very high- high enough that they had him stop all Cloumadine for a few days. They now have him started on a lower dose and checking again next week when the other kidney function tests are done.
A few things Joe noticed the 8 days he was off drug is he did not feel as tired-even with school starting. That would explain why I have not found him in a puddle at the end of the day like I expected. He also noticed his memory was better. He can't say for sure when it started while on drug but once off it was better. When Joe can't pull baseball stats and dates and explanations from history out of the air then his memory is shot.
Ellie and Joey started back to school last week. They are excited for cross country. Joe is also helping coach cross country this year.
Mark is enjoying his days at the sitters without his pesty older siblings there.
We will all need to run after stuffing ourselves at the Fulton Country Fair this weekend. The best fair in the land!
Pazopanib is also interacting with Coumadin. His INR (blood clotting factor) results were such that they had to keep increasing his Coumadin over time to the height of 7.5mg. When he went off Pazopanib his INR went very high- high enough that they had him stop all Cloumadine for a few days. They now have him started on a lower dose and checking again next week when the other kidney function tests are done.
A few things Joe noticed the 8 days he was off drug is he did not feel as tired-even with school starting. That would explain why I have not found him in a puddle at the end of the day like I expected. He also noticed his memory was better. He can't say for sure when it started while on drug but once off it was better. When Joe can't pull baseball stats and dates and explanations from history out of the air then his memory is shot.
Ellie and Joey started back to school last week. They are excited for cross country. Joe is also helping coach cross country this year.
Mark is enjoying his days at the sitters without his pesty older siblings there.
We will all need to run after stuffing ourselves at the Fulton Country Fair this weekend. The best fair in the land!
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