Don't Get Sarcoid After Cancer

All of my doctors; the pulmonologist, rheumetologist and even my oncologist, have told me at least once that being diagnosed with active Sarcoidosis a year after being diagnosed with breast cancer was bad luck. This was both their way of telling me they don't think the two are related, and I hope, to let me know that they know how much it sucks!

The problem with bad luck is that it also limits your choices in life.

First, my choice to have reconstruction disappeared when the Sarcoid went active. No plastic surgeon will touch me. My immune system is too messed up and the risk of infection from any surgery is too high. Plastic surgery is out. Though my rheumetologist did feel it necessary to warn me not to go to L.A. In is opinion, the ethics of many plastic surgeons there are so thin they'd let me try. I'm not going to L.A.

Now, my choices of Sarcoid treatments have been further narrowed. The plan a month ago was to get me stabilized on the steroids and then, if they did not eliminate the Sarcoid symptoms, to move me to the immuno-suppressant drugs that have shown a lot of success with other auto-immune diseases and some good results with Sarcoid. Well, the steroids have stabilized me, but only at high doses. When we go down even 5mg, the chronic cough and breathing trouble kick up. The problem is that the high dose steroid causes sleeplessness, craziness (which may be a result of the first problem!), face and neck swelling, thinning skin and little cuts all over my hands and feet that won't heal, and general moodiness (probably caused by all the other things). Today I'd hoped to get moving onto plan B. I'm sick of the steroids and have no intention of staying on them any longer.

Since our last meeting, my pulmonologist had done more research and had met at length with the rheumetologist. They had other plans for me. They won't put me on the immuno-suppressants at all. Their research turned up more problems with the side effects of the drugs, particularly when lung weakness exists already (just read the fine print of a Humira ad to see the gist of the problem). Further, having had cancer within a short time of going on these drugs can drastically increase the risk of recurrence. They both believe that the risk of serious and life-threatening side effects is too high for me to try the new drugs. OK then, fewer choices.

Instead, I do get to get off of the steroid, but am trading it out for very high doses of inhaled steroids. This should mean fewer side effects, but the doctors can't yet say if the inhaled steroids will be as effective as the pills. We'll know over the course of the next few weeks as I trade the two out.

If it works, then I just stay on these forever, or until the Sarcoid goes into remission (hope hope!). If it doesn't, then I don't know. Peeves the cough will be back, I guess.

I just hope people don't assume I have swine flu!