Sunday, August 14, 2016

Treatment Plan Update

I have my six month checkup coming soon so I thought I would check in with you before the visit and then I will update things after the visit.

My treatment Plan has three parts.

1) I am currently taking Anakinra shots once a day to manage inflammation in my body which seems to have the effect of "pausing" the growth of my ECD. This may or may not be true, but what's certain is that as soon as I went off of this treatment last year the ECD started to spread so I'm hoping that the scans I'll be taking in a few weeks show that were back to the status quo.

2) I am taking .5 ml of Testosterone Cypionate by injection every 6 days to replace the testosterone not being produced by my cancer compromised testes. The result of this treatment has been mood stabilization (though I do tend to get a little off the day before my next injection) and a massive increase in my energy level. Prior to testosterone replacement therapy I was tired and moody all the time.

In an effort to combat the muscle wasting I experienced last time I was on Anakinra I have taken up running. In fact I would say I have become a "crazy" runner. I've attached a few photos from this summers runs and I hope you enjoy them.






3) I am trying to eat a diet very low in fatty and inflammatory foods. This means I've cut out Beef and Pork, Grain, and Dairy from my diet.

My cooking and eating regiment has become a much more permanent way of life at this point. I spend must of Sunday afternoon shopping, cooking, and packaging meals for the coming week. I have been largely successful in moving away from eating 3 large meals a day and instead eat small meals every 1.5-2 hours (more if I'm hungry). I easily eat 7+ servings of fruit and vegetables a day and 3+ servings of lean proteins.

Some people think I'm being drastic in the way I eat, but if my body is the engine that keeps me alive then I can't see how feeding it the best foods possible could be a bad thing particularly when you consider how much my system is already being stressed by ECD.

And that is where things are for now. Please pray for me that this next set of scans shows no new growth, because I could really use a break from bad health news this time.

The Blessing of Cancer

One of the difficulties of having ECD in the beginning was how to explain it to people. Try talking to your boss about how you rare histiocytic disorder requires you to go to the doctor 5-10 times a year and you'll watch their eyes glaze over. Try explainning it to a friend or a family member and you soon find yourself trying to compare ECD to things they might know like autoimmune disorders. The thing is though it always felt like I had cancer but in an effort to be precise I always tried my best to avoid calling ECD that.

The good news though is that the World Health Organization headquartered in Geneva, Switzerland has reclassified Erdheim-Chester Disease as a histiocytic neoplasm. This means the rare disease is now considered a slow-growing blood cancer that may originate in the bone marrow or a precursor cell.

This is great news for two reasons. First, it make it much harder for my insurance company to deny me access to whatever treatment my doctor suggests. Second, it make explaining my current health condition MUCH easier and anything that makes my life easier is a blessing.