My follow-up appointment with the dermatologist was not what I was expecting. Although the red bumps are still all over me, I thought the doctor would just try to talk me into taking another drug.
I was determined to say no to anymore oral medicines. It’s not worth the chance of having another horrible reaction.
Instead she asked me if the rash itches. I said no, but she asked me again later. She told me that I must be so very tough. She said that my biopsy didn’t show psoriasis or eczema. she mentioned that my rash could be part of Cutaneous T-Cell Lymphoma. I was in shock, because I thought she had zeroed in on psoriasis.
We discussed what I should do for treatment. After a lot of back and forth, we decided that I would be in the noon-day sun for 20 minutes each day. (This replaces coming to the hospital for Phototherapy). In the winter, I will probably need to drive to the hospital for treatment.
The one drug she mentioned was Low Dose Naltrexone, which I’m already taking. My normal dose is 4 mg twice a day. She wants to increase to 50 mg, but will start with 1/4 for a week, to 1/2 for a week, etc until I get to 50. She said if I can’t tolerate a level, we’ll just back down to what works for me.
I feel good about the treatments, but am pretty scared of what might come next. Cutaneous T-Cell Lymphoma is a more rare type of Lymphoma. At 4 stages, the last stage is horrid. Of course, I haven’t been diagnosed. I did read that Low Dose naltrexone can be used for cancer treatment at the higher levels.
I would tend to think that a dermatologist should be able to decide the diagnosis, but it’s not that easy. CTCL is hard to diagnose and the doctor told me that it often takes 6 years to reach a diagnosis. The doctor wants to see me in 3 months, with blood tests done a week or two before my appointment.
I’m glad that she’s going to keep checking on this because if it would be cancer I’ll want all the early stage treatment that I can get. Many diseases like this don’t have a specific blood test that that will definitely say yes or no to my doctor’s concern. And, I could just freak out and pester the doctor to get me started on all the drugs she can think of.
I really just need to sit down and wait. Waiting is so difficult, but brings me so many rewards. As God teaches me about patience, I realize that real peace can only happen with patience. What are the hardest things for you to wait for?
Disclaimer: I’m not a medical expert. This post is written according to my experiences and opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.
@2023, copyright Lisa Ehrman