CELL Not So ExCEPTional

I calculated recently that I take 266 pills per week (that doesn't include if I take breakthrough medication, and if I'm on an antibiotic). One of the medicines I take, Cell-Cept (which is my oral chemo) is six giant "horse pills" a day. The Cell-Cept is taken in place of the Methotrexate to try and slow the progression, and keep me from "falling off the cliff." I started it right after I got back from my Make-A-Wish trip. It usually takes a "normal patient" 3-5 months to start noticing if the medication is helping them to improve, or in my case slow things down. But for me, it would most likely be 4-6 months. When I stopped the Methotrexate and switched to the Cell-Cept, things started to decline. I started having more weakness, swelling, stiffness, pain, fatigue, and difficulty swallowing and breathing. The doctors said that they have never seen me as bad as I have been, and have been declining much more quickly  than they expected. My dose started at two 500mg pills twice a day, totaling 2000mg or 1g a day, with 10mg of prednisone a day (I also had an IV dose of 1000mg of IV steroids, and a taper pack). Now I am on three 500mg pills twice a day (3000mg or 3g), and 10mg of daily prednisone. The doctors are concerned because my white blood cell count (WBC) continue to be elevated (not that much for a normal healthy person), as well as other inflammatory markers, and an enzyme called Lactate Dehydrogenase (LDH), which is a non-specific muscle enzyme that is released in response to tissue damage. Normal levels are between 81.0 and 234.0. Mine on a lab test from the week of April 4th are 472. That is more than twice what it should be, and should not be this high on the dose of Cell-Cept and prednisone that I'm on. Dr. Carrasco has ordered an MRI of my thigh muscles, to see what the muscles look like. An MRI of my thigh was how the diagnosis of Dermatomyositis (DM) was made, at some muscle inflammation was seen. 

As you can imagine, this has been so frustrating for me, as the medicine is not slowing things down as well as the Methotrexate was, even though I wasn't getting the desired effect with it. But unfortunately I have reached my "maximum lifetime limit" for how much Methotrexate I can take. I am in new territory for the doctors, so it is really an experiment as to what medications I can take. At my visit with my Hem/Onc doctor, Dr.CB a week ago from yesterday, she had asked if Dr. Carrasco had considered combining a lower dose of Cell-Cept with something else, like a lower dose of Cytoxan (the monthly chemo I took). In Oncology they mix these types of medications all the time, but not really in rheumatology, which is why when I asked Dr. C at my last visit, he was cautious. But from an oncology standpoint, there is not a big scare with doing that, and Dr. CB said she would give it to me, if Dr. C wanted to do that, but he would have to make the final call. The two are going to talk soon, so I hopefully will no more at my next appointment with him in early May, as something else needs to be done, as the Cell-Cept is not doing what it should.

I am trying not to think about it, and the Lord has definitely helped to keep me at peace. 2 Thessalonians 3:16 says, "Now the Lord of peace himself give you peace always by all means. The Lord be with you all." I love this scripture verse, because it reminds me that God will always give me peace, and to use that peace no matter what the situation is. That gives me comfort, because I know that I can be at peace always. And with this roller coaster that Im on, that is very comforting. 


Joyful Love
         &
Blessings In The Lord
Alexandra K. Acosta