To some degree I measure my health status by the frequency of my visits to the emergency room. I made it to over 10 months, but last Friday broke my streak.
It's been a tough time with pain and breathing problems, but Friday night was different. I'd had a very quiet day, nothing strenuous (my usual trigger). Just hanging out on the couch watching Coronation Street (the only show that I hate to miss! Blame my first roommate Laura for getting me hooked as a teenager).
Suddenly it felt like my chest was freezing up. No air in or out for a few seconds. It passed. This has happened before, alarming for a few seconds but then it's over. But this time it happened again a few minutes later. Then again, with less time in between and more forcefully. Until I could hardly stand up. When I have an arrythmia it often helps if I make myself cough, but this wasn't working. Nothing seemed to help, and it felt like I was suffocating. Is this what drowning would feel like?
My husband called 911, and a fabulous group of paramedics and EMTs showed up at our front door within a few minutes. Thankfully after oxygen, several doses of nitroglycerin and a few hours in the ER, my breathing was back to usual. Still a bit difficult but nowhere near as frightening as it had been hours earlier.
This episode scared the heck out of us. I don't want to think negatively, but I suspect this might not be the only time this will happen. Having Erdheim Chester Disease firmly entrenched in my heart is going to cause problems. Lately it's been a wild ride of low to very high heart rates, low to high blood pressure - my heart just can't seem to decide what to do. Can't blame it for having a hissy fit last Friday I suppose.
I talked to my specialist today, he told me that I probably won't be prescribed the drug I'd been hoping to try (Kineret), that the team would rather I try a chemotherapy drug that has been effective for slowing down the progression of lung cancer (I don't have lung cancer, but then again ECD treatment is hit and miss, maybe it might help to reduce my symptoms).
I'm just not happy about that prospect. I'm digging up all the info I can find on both drugs so that I can make an informed decision about the chemo option. But I REALLY don't want chemo. Really, really don't. Shall I say it again?
Wish me luck over the coming weeks, my doc today instructed me to go cold turkey on the prednisone. 3 mg to nothing. One one hand, I'm thrilled at the prospect of getting off of this stuff, more side effects than I can count on all fingers and toes. On the other hand, dropping one mg at a time had been difficult, the withdrawal process has been rough. But looking at the big picture, I think I'd rather take a big hit of withdrawal symptoms for a few weeks rather than keep dragging this out over the next few months. Plus vanity plays into this a bit - I'm tired of carrying this extra weight - and the last thing I want to do is buy warm weather clothing for this larger size! So here I go.... three, two, one - deflate!
Wednesday, March 31, 2010
Thursday, March 25, 2010
Time Flies. Or Not.
Today is the first anniversary of getting my diagnosis of Erdheim Chester Disease. How clearly I remember our concern of being called back to the orthopaedic oncologist's office after having had an initial all-clear on cancer just a week or so earlier. The relief of the previous week turned to fear - who gets called back after being told that a tumour isn't cancerous? Had the pathologist made an error?
I'm really not sure where my mind is at today. Today is one of my tough days, and even lifting my arm above my head seems like a monumental effort. What will the next year bring? Will I see any improvement - will I have access to the drug that just might improve my quality of life?
The waiting is doing my head in right now.
I'm really not sure where my mind is at today. Today is one of my tough days, and even lifting my arm above my head seems like a monumental effort. What will the next year bring? Will I see any improvement - will I have access to the drug that just might improve my quality of life?
The waiting is doing my head in right now.
Wednesday, March 17, 2010
Patience my dear, patience...
Last post I wrote about my hope to be able to try a new drug. An experimental one. I visited the hospital yesterday for one of my very frequent check-ups, and to discuss the possibility of giving Kineret a try. There's more to this process that I had thought!
In theory, my doctors believe that Kineret might be of help with not only reducing my bone pain, but might also slow down the progression of my illness. However, there are some serious risks with this drug that need to be further investigated. Kineret (and bear with me here, this is all jumble to me!) is an "interleukin-1 receptor antagonist" - part of the "biologic response modifier" family of treatments. This drug increases the risk of infection, and also carries a small risk of causing lymphoma among other side effects.
This drug is intended to treat moderate to severe rheumatoid arthritis - and that's where the complication comes in. Researchers don't know what the implications are for Erdheim-Chester Disease; white blood cells already don't know how to behave properly so nobody really knows how they'd react to this treatment. Just a handful of ECD patients have tried this, and only for a short time - far too soon to determine any long term implications.
My medical team will be doing further research, including consulting with an oncologist at a cancer centre in the US who has been doing advanced research on interleukin treatments. If that's a go - then seek gov't approval to use this drug for an illness it was otherwise intended for. Then, funding - this isn't cheap!
Am I still on board? Yes. Do I understand that this could go either way? Yes. I know that there's no cure, but I'm desperate for a better quality of life for at least awhile. I need to hope for something good, because some nights when I'm feeling quite awful it can be hard to envision a better day tomorrow.
Yesterday was a pretty good day. So is today. I'm feeling greedy, I want more days like these.
In theory, my doctors believe that Kineret might be of help with not only reducing my bone pain, but might also slow down the progression of my illness. However, there are some serious risks with this drug that need to be further investigated. Kineret (and bear with me here, this is all jumble to me!) is an "interleukin-1 receptor antagonist" - part of the "biologic response modifier" family of treatments. This drug increases the risk of infection, and also carries a small risk of causing lymphoma among other side effects.
This drug is intended to treat moderate to severe rheumatoid arthritis - and that's where the complication comes in. Researchers don't know what the implications are for Erdheim-Chester Disease; white blood cells already don't know how to behave properly so nobody really knows how they'd react to this treatment. Just a handful of ECD patients have tried this, and only for a short time - far too soon to determine any long term implications.
My medical team will be doing further research, including consulting with an oncologist at a cancer centre in the US who has been doing advanced research on interleukin treatments. If that's a go - then seek gov't approval to use this drug for an illness it was otherwise intended for. Then, funding - this isn't cheap!
Am I still on board? Yes. Do I understand that this could go either way? Yes. I know that there's no cure, but I'm desperate for a better quality of life for at least awhile. I need to hope for something good, because some nights when I'm feeling quite awful it can be hard to envision a better day tomorrow.
Yesterday was a pretty good day. So is today. I'm feeling greedy, I want more days like these.
Wednesday, March 10, 2010
More Druggies - One I'm Actually Hoping For!
I find that I'm fighting an overall sense of dismay over my illness. How dare it not respond to all the meds I've taken so far? What blinkin' nerve!
A few meds that I know I'll be adding soon:
- a biphosphonate to help with the bone density loss. I'm hoping this next one goes better than the Fosamax last summer. This time we'll be trying the intravenous route for delivery.
- a beta blocker. My heart rate has been out of control of late, and yesterday's data download from my pacemaker confirmed it. Over 8,000 episodes of a heart rate over 140 beats per minute over the last six months, most have no correlation to exercise, stressful situations etc. A good number in the middle of the night - I know my dreams are a bit wacky but that's a bit much! A bit ironic since I had the pacemaker implanted almost six years ago to deal with bradycardia - a very slow heart rate. That's still happening too, dropping suddenly to below 50 bpm on average about 15-20 times a day. My heart is the queen of cardiac roller coaster rides! It's time to exit that amusement park.
- and here's the drug I'm excited about. Kineret. Keeping everything crossed that I can cross that I'm given the chance to try it. Several other ECD patients have reported that Kineret has greatly reduced their bone pain (which has been getting significantly worse over the last months). An exciting prospect for this alone, but what really got me hyped was reading about a study whereby three patients who had been dealing with pericarditis has almost immediate resolution after the first dose! After having tried pretty much the same course of treatment that I've tried! (colchicine, steroids, other anti-inflammatory drugs). I immediately sent off the article to my doctor, who is now discussing the drug with his team. I'm on pins and needles waiting for my appt next Tuesday to find out if we can go down this path. It would need to be approved for use (it's meant for moderate to severe rheumatoid arthritis), and if approved then we'd need to find funding (I've read that the cost is between $15-20K per year in Canada).
Kineret is injected daily, both by husband and daughter are on board to give me an injection when it's time to rotate to a location that I can't reach. I'd be able to do the other spots myself. I'm getting ahead of myself though. It's hard not to, I'm feeling rather beaten down by the pain, fatigue and general unwellness of late. Just when I'm feeling better for a few days the pericarditis acts up again, letting me know who's boss. Time for a mutiny, don't you think?
A few meds that I know I'll be adding soon:
- a biphosphonate to help with the bone density loss. I'm hoping this next one goes better than the Fosamax last summer. This time we'll be trying the intravenous route for delivery.
- a beta blocker. My heart rate has been out of control of late, and yesterday's data download from my pacemaker confirmed it. Over 8,000 episodes of a heart rate over 140 beats per minute over the last six months, most have no correlation to exercise, stressful situations etc. A good number in the middle of the night - I know my dreams are a bit wacky but that's a bit much! A bit ironic since I had the pacemaker implanted almost six years ago to deal with bradycardia - a very slow heart rate. That's still happening too, dropping suddenly to below 50 bpm on average about 15-20 times a day. My heart is the queen of cardiac roller coaster rides! It's time to exit that amusement park.
- and here's the drug I'm excited about. Kineret. Keeping everything crossed that I can cross that I'm given the chance to try it. Several other ECD patients have reported that Kineret has greatly reduced their bone pain (which has been getting significantly worse over the last months). An exciting prospect for this alone, but what really got me hyped was reading about a study whereby three patients who had been dealing with pericarditis has almost immediate resolution after the first dose! After having tried pretty much the same course of treatment that I've tried! (colchicine, steroids, other anti-inflammatory drugs). I immediately sent off the article to my doctor, who is now discussing the drug with his team. I'm on pins and needles waiting for my appt next Tuesday to find out if we can go down this path. It would need to be approved for use (it's meant for moderate to severe rheumatoid arthritis), and if approved then we'd need to find funding (I've read that the cost is between $15-20K per year in Canada).
Kineret is injected daily, both by husband and daughter are on board to give me an injection when it's time to rotate to a location that I can't reach. I'd be able to do the other spots myself. I'm getting ahead of myself though. It's hard not to, I'm feeling rather beaten down by the pain, fatigue and general unwellness of late. Just when I'm feeling better for a few days the pericarditis acts up again, letting me know who's boss. Time for a mutiny, don't you think?
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