Blind Men and Elephants

May 5, 2010 at 6:02 pm (Uncategorized)

Last week I got what I hope will be my final dose of chemo. Just writing the words, “final dose of chemo” gives me a thrill.

Even before I went to visit the sarcoidosis expert in Ohio, I had decided to ditch chemo. Getting Cytoxan infusions every other week had become almost as bad as the disease. Since Cytoxan builds up in one’s system, every dose got a little harder and the hideous side effects lasted a little longer. When my local doctor told me I’d received ten times more Cytoxan than his cancer patients, some switch clicked inside me. I was no longer willing to make myself so violently ill in hopes of getting cured.

I wasn’t sure what the sarcoidosis doctor would say about my plan to stop, though. He had recommended the drug for me in the first place, and whenever my neurosarcoidosis flared, he had urged me to increase my dose. I like to be in charge of own medical care, but I still want to be a “good patient.” I fretted that he would become angry if I insisted on stopping chemo. Would he refuse to be my doctor? Would he help me devise a treatment plan that doesn’t involve Cytoxan—if he still wanted me getting chemo and I dug in my heels?

It’s beyond the scope of what I’m writing today, but the doctor-patient relationship—especially when the illness that brings the patient to the doctor repeatedly is chronic—is complex and worth pondering. But for the purposes of this essay it’s pertinent that my relationships with doctors—especially with the high-profile, research gurus—never feels wholly like two equals meeting. I try to brush off the feeling that I am a supplicant seeking wisdom from my betters, but I haven’t entirely succeeded.

Fortunately, all the worst-case scenarios I had envisioned came to nothing. The doctor agreed that it was time ti try something different. He recommended I try a drug called CellCept (Mycophenolate Mofetil). Although CellCept is used primarily for organ transplant patients, the drug is showing some promise in fighting sarcoidosis. It is in the same broad category of drugs as Cytoxan, but it isn’t quite as harsh. I’ll take it daily in pill form, instead of having to give up most of a day for an infusion, as I did with Cytoxan. I’m glad that CellCept won’t be quite as devastating to my already-exhausted body. But the drug has its own set of nasty side-effects. It will greatly weaken my immune system—to the point that I won’t be able to get vaccines—and I stand a greater risk for contracting lymphoma and skin cancer in the future. But I believe these risks are worth taking. CellCept should suppress my body’s over-ambitious production of epithelioid histiocyte cells, which are the giant immune cells at the center of granulomas (the balls of cells that characterize sarcoidosis and that riddle my vital organs).

In addition to taking CellCept, I will continue getting monthly infusions of Remicade (Infliximab) and periodic infusions of Rituxin (Rituximab) to fight two additional aspects of sarcoidosis. One of the joys of the current medical understanding of my disease is that it’s very much in the blind-men-describing-an-elephant stage. Doctors and researchers can identify various factors that they think are connected to how the disease works, but they can’t yet explain how or why they fit together. They know that epitheliod histiocytes are at the center of the granulomas – hence the CellCept. They also know that multiple T-Cells cluster around each epithelioid histiocyte. These T-Cells excrete something called “tumor necrosis factor” or TNF, which is an essential part of the body’s inflammatory immune response to all sorts of invaders, including cancers. But in sarcoidosis patients, T-Cells are apparently too zealous, and the over-production of TNF is believed to be, well, a Bad Thing. (Unfortunately, the current medical thinking doesn’t seem to be too much more advanced than that admittedly reductive description.) Remicade inhibits my body’s production of TNF. So by limiting the amount of TNF in my system, we can hopefully keep the sarcoid granulomas from forming—the same goal as the CellCept acting on the histiocytes, but from a different angle. The Rituxin targets granuloma from a third vantage point. B-Cells cluster around each granuloma’s central hisiocyte. Researchers don’t understand precisely why B-cells are involved in this way. But they think that zapping B-cells with drugs like Rituxin helps certain sarcoidosis patients. I responded very well to the initial doses of Rituxin I got after my most recent neurosarcoidosis flare-up. By persisting with the drug, we hope I can made additional improvements. I like to envision these three drugs as highly-trained snipers—each taking aim at sarcoidosis from a unique angle.

I wish I didn’t have to take any medicines for my sarcoidosis. I still cling to the belief that the disease might spontaneously remit. The Ohio sarcoidosis expert reminds me at every visit that I have a ten percent chance of this happening every year. Short of this, I am relieved to be free from chemo—at least, for the time being. That feels almost as miraculous and magical for me. I am grateful for this good news and for a new treatment plan.


  1. Mariko said,

    Rebecca! I will delurk and say hello. I’ve been following your blog for a while now and am humbled by your strength and honesty (and, of course, your writing skills). Just wanted to say that my mother-in-law has been on Remicade for just over a year now, I think, for her Crohn’s, and it has been a total miracle drug for her. She hasn’t had any side effects to speak of, and she is really strong and healthy now. For years she couldn’t eat salads or raw veggies, but now she can eat just about anything and feels fine. I hope your new drug cocktail works wonders for you!

  2. Kris said,

    Rebecca, I have been on CellCept for over 3 years. I have cardiac sarc and I have an ICD. I have not had a tachycardia event where my ICD fired shocking me out of a deadly cardiac rhythm since taking cellcept. The cellcept was prescribed by my Dr. at Johns Hopkins. Eventhough my immune system is compromised from cellcept I have had several vacinnations including pneumonia, influenza, and H1-N1 influenza without any side effects. I am very cautious with cleanliness and go above and beyond with the hand washing, cleaning, avoiding sick people and crowded venues during flu/cold season. This can be difficult as I have a 5 and 8 year old. Best of luck with the cellcept. My life has changed since I started taking it. I wish I did not have sarcoidosis but the cellcept has helped me regain some of the life I had before I heard the word sarcoidosis uttered for the first time.

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