I like to live my life with a clearly defined path. I like
to gather all the facts I can before I make any decisions and then act
only after carefully considering the options. This makes living with Erdheim-Chester Disease difficult. The lack of data and the ill defined courses of treatment available are maddening for someone like me.
With most cancers for instance there is a well defined course of treatment. This means when you are diagnosed you immediately start at step one of whatever the per-approved treatment regiment is for your disease (one would also hope this means you have little trouble from your insurance company as well).
With ECD the doctors can't agree if it is a slow moving form of cancer or an auto immune disease or perhaps something else. There is certainly no single approved course of treatment (my doctor prefers kineret over interferon based solely on anecdotal evidence) and don't even get me started with how the insurance company responds (by denying everything and hoping you will go away).
The way I cope with this is by obsessively review the ECD website and FB page to see how others with the disease are doing. Every time I hear that a persons receiving treatment with kineret, interferon, zelboraf, or something else isn't working my heart breaks. I found out today that someone we know who has been on zelboraf just got their first set of scans back and it showed no progress against the disease.
It breaks my heart to hear this because this is a small community and I know these people but it also scares me because these are the same drugs we all have to rely on. If it doesn't work for them then how is it supposed to work for others?
Will it work for me?
Four weeks until I find out if the daily shots of Kineret have worked. Scared and wishing we knew more, pray for me.
With most cancers for instance there is a well defined course of treatment. This means when you are diagnosed you immediately start at step one of whatever the per-approved treatment regiment is for your disease (one would also hope this means you have little trouble from your insurance company as well).
With ECD the doctors can't agree if it is a slow moving form of cancer or an auto immune disease or perhaps something else. There is certainly no single approved course of treatment (my doctor prefers kineret over interferon based solely on anecdotal evidence) and don't even get me started with how the insurance company responds (by denying everything and hoping you will go away).
The way I cope with this is by obsessively review the ECD website and FB page to see how others with the disease are doing. Every time I hear that a persons receiving treatment with kineret, interferon, zelboraf, or something else isn't working my heart breaks. I found out today that someone we know who has been on zelboraf just got their first set of scans back and it showed no progress against the disease.
It breaks my heart to hear this because this is a small community and I know these people but it also scares me because these are the same drugs we all have to rely on. If it doesn't work for them then how is it supposed to work for others?
Will it work for me?
Four weeks until I find out if the daily shots of Kineret have worked. Scared and wishing we knew more, pray for me.
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