I am happy to report that I am “unremarkable.” I now know that in the language of medical reporting, “unremarkable” is good and “remarkable” can mean something very, very bad. So based on the results of my recent PET scan, I remain in remission.
In this first year of remission, I have alternating PET & CT scans every 3 months. My next CT scan will be in October, just short of my 1-year anniversary of my initial diagnosis. My PET scans are always challenging to read because the sarcoidosis in my lungs always shows up and makes it look like I still have still have lymphoma in the lymph nodes around my chest area. Sarcoid what? I know. I never heard of sarcoidosis either until last summer when my pulmonologist did a lung biopsy and found sarcoid in my lungs. (The biopsy was done because I had a “cloudy” chest X-ray result when I went in for a chest cold.)
What is sarcoidosis? It is an autoimmune disease in which tiny granulomas (small inflammations) form on organs of the body, most commonly the lungs (which is where my sarcoid is located). If sarcoid starts affecting the function of the organ, it is treated with prednisone --which is the same steroid that I took as part of my chemo treatment. Prednisone was the “P” in my R-CHOP treatment.
I take lung function tests (PFT-pulmonary function test) at one of the local hospitals every 4 months to make sure the sarcoid is not affected my breathing. So, far my breathing is normal. In fact, this last PET scan showed that the sarcoid in my lungs has gone down (perhaps an unintended positive side effect of the chemo?)
So, last year I was diagnosed with sarcoidosis in July and lymphoma in October. When we visited the lymphoma oncologist at MD Anderson, he told us that he sees quite a few sarcoid/lymphoma patients. He speculated that there might be some sort of relationship between the two diseases, but at this point, he said there is neither money nor prestige in this topic to generate any research interest.
Last fall, I thought my exhaustion and weight loss was because of the sarcoid. I remember searching the web for hours until I found that one sentence in the Internet that said sarcoid symptoms COULD include weight loss and fatigue. I had no idea that my vague feeling of poor health was because of a tumor growing in my liver.
At the end of my chemo treatment in February, I was presented with the possibility of participating in a phase 3 clinical trial with an experimental drug called enzastaurin. This drug is part of a clinical study to investigate the prevention of relapse in lymphoma patients. I was ambivalent about the possibility of taking this experimental drug because of the unknown potential side effects. Fortunately the drug maker rejected me for the study because of my sarcoid. Eli Lilly decided that my PET/CT scans would be too difficult to read and wouldn’t provide clear evidence of the drug’s success. I was very happy that the decision whether to participate in the clinical trial was made for me.
I haven’t used a comb or brush since November. My hair is still too short to brush. It is incredibly curly now. Some friends gave me a few barrettes for my short hair to up my “sass.” I am just happy it is my hair that is remarkable, not my PET scan.
Here is a picture of me with my wig off back in April with Dr. Fain, my oncologist.This doctor, along with the wonderful team of oncology nurses at Southwest Regional Cancer Center, together with R-CHOP chemo and lots of prayer from three major world religions made it possible for me to sit cancer free at my computer this very moment.
