After three weeks of phototherapy treatments, I am not seeing any change in the Mycosis Fungoides. If you’re reading for the first time here, I am trying to fight Cutaneous T-Cell Lymphoma (Mycosis Fungoides).
I am never surprised when I don’t get better after a treatment. Almost all the treatments that I’ve tried or am still taking don’t do everything they are supposed to do. None of the medications that I’m taking give me 100% of the relief that they’re designed to provide.
The nurse who oversees the phototherapy lab asked me if I would like to move from Level 1 to Level 2. I’m in Level 1, which means that I’m very fair and burn every time I go unprotected in the sun. Level 2 would give me a stronger treatment. If I would start to get a sunburn from this treatment the level would be lowered. But, it might provide more healing for the CTCL.
Since I’m actually wanting improvement, I agreed to try Level 2 on Monday. I’m sure that I’ll be nervous, but getting a slight sunburn won’t kill me. I’ve certainly had those before (especially when I was young).
I should be more excited about this treatment working. I’m so very tired! The trips three times a week, combined with the fatigue I get from being in the sun (phototherapy) means that I feel exhausted! It’s good to have a Saturday to do nothing but rest.
Treatments for chronic illness is all trial-and-error. My doctors have tried lots of different drugs and therapies over the years. Many of them were discontinued for being ineffective or extreme side-effects. Not one of my medications does everything that it claims to do. But, I take them anyway.
That might sound crazy, but it is often the way that medicine works. I’ll give you an example. I take Gabapentin for neuropathy. Gabapentin is actually an anti-seizure drug. Outside of Epilepsy, it is primarily used for nerve pain from neuropathy. This is the effect I get. It completely stopped my zapping and burning neuropathy pain. Some doctors prescribe it for regular pain, but it doesn’t give me any general pain relief.
Because I have a history of un-diagnosed De Ja Vu episodes (possibly seizures), I love that the Gabapentin stops all of those unpleasant experiences. This takes so much stress away! I love that symptom removal.
Another example is that Tizanidine (muscle relaxer) offers a moderate amount of pain relief in my back. I have extreme tension in my shoulder and back muscles. Because of Scoliosis and Ehlers Danlos Syndrome, my back muscles are working extra hard trying to hold my spine in place. They end up with knots, spasms, and sharp, burning pain. Having a moderate amount of relief from this is worth the extra sleepiness I get from Tizanidine.
When we have numerous chronic illnesses, we take what good we can get from our treatments. Anything is better than nothing. The goal with treating multiple chronic illness pain or symptoms is to put a group of helpful treatments in our treatment “basket”. If I get 15% relief from one drug and add another that gets me 50% relief, then I’m doing pretty well!
Our treatment basket will contain all types of helpful things. I will add heating pads, massages, ice packs, OTC medicines, self-care protocols, and more to my basket to get as much relief as possible.
What’s in your treatment basket? I encourage you to try adding some new things that might help your symptoms to go away or at least greatly subside. I’ve become more and more open to treatments that might sound odd in my desperate attempt to live a normal life.
@2021, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my opinions and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.